Alright Kelly - you volunteered =)
Hi Kel. Thanks for saying you'd take a look at my labs for me. I hated to ask you because you are so bombarded with these requests, and I thank you SO very much for volunteering.
Instead of doing this via PM, I wanted to post publicly so folks can see what happens to you when you do not keep up with your vitamins and iron. To everyone reading this - I had a cardiac arrest in Aug 2010 largely related to vitamin and electrolyte deficiencies. I was put on a respirator until my family could get up here to say goodbye. They still do not know how or why I recovered. Since then I have been on a mega vitamin/mineral regimen and my labs still suck. Below are the latest. Please bear in mind that these were taken directly AFTER 5 iron infusions and a transfusion of 2 units of blood.
Also, I don't know what any of these terms mean really so I'm just gonna coyp the terms as they are on the lab sheets. I have bolded the line items that are out of range.
WBC 7.11
RBC 3.19
Hgb 8.0
Hct 24.8
MCV 77.7
MCH 25.1
MCHC 32.3
RDW 14.6
Plt 289
Neuts 65.2
Lymphs 21.0
Monos 10.7
Eos 2.8
Basos 0.3
Ab neuts 4.6
Abs lymphs 1.5
Abs monos 0.8
Abs eos 0.2
Abs basos 0.0
Sodium 135
Potassium 3.6
Choloride 104
CO2 20
Anion gap w/o K 11
BUN 18
Creatinine 1.25
GFR non-AA 46
GFR-AA 56
Glucose 81
LD 203
SGOT/AST 30
Alk Phos 118
SGPT/ALT 23
GGT 51
Bilirubin total .3
Protein 6.2
Albumin 3.5
Globulin (calc) 3.0
A:G 1.2
Calcium 8.5
Phosphorous 3.4
Uric acid 5.3
Lipid Panel/CVP
Cholesterol 127
Triglycerides 53
HDL 60
LDL 56
Non HDL chol 67
Chol/HDL Ratio 2.12
Vitamin B12 >5000
Folate 46.5
Ferritin 10
Iron 28
Iron Bind Cap 409
% Saturation 7
PTH Intact (ICMA)
PTH Intact 76.2
Total Calcium 8.7
Ionized Calcium 1.22
Vitamin A 522
Vitamin D Hydroxy 142
Zinc Plasma or Serum 76
PHEW!!!! I didn't type in what the "normal" ranges are because I'm pretty sure you know them but I can go back and put them in if you need me to.
My vitamin regimen now and for the last several months has consisted of 2 Centrum Multi Vites, Selenium (200mcg), Magnesium (500mg), Vit C (1000mg), Heme Iron (12 mg 4 x day), Bariatric Advantage Calcium Chews and Citrical petites (4000mg per day), 50,000iu vit D daily, (now dropped to twice a week due the NP freaking out over my vit D number) Vitamin B12 injection once per week (now stopped completely, again due to NP freak out).
So Kelly, what say you? Any advise or thoughts would be appreciated. I honestly don't know what to do anymore. And believe it or not, these are actually BETTER than my last set. AAARGGGH!
Help me=) Please.
Instead of doing this via PM, I wanted to post publicly so folks can see what happens to you when you do not keep up with your vitamins and iron. To everyone reading this - I had a cardiac arrest in Aug 2010 largely related to vitamin and electrolyte deficiencies. I was put on a respirator until my family could get up here to say goodbye. They still do not know how or why I recovered. Since then I have been on a mega vitamin/mineral regimen and my labs still suck. Below are the latest. Please bear in mind that these were taken directly AFTER 5 iron infusions and a transfusion of 2 units of blood.
Also, I don't know what any of these terms mean really so I'm just gonna coyp the terms as they are on the lab sheets. I have bolded the line items that are out of range.
WBC 7.11
RBC 3.19
Hgb 8.0
Hct 24.8
MCV 77.7
MCH 25.1
MCHC 32.3
RDW 14.6
Plt 289
Neuts 65.2
Lymphs 21.0
Monos 10.7
Eos 2.8
Basos 0.3
Ab neuts 4.6
Abs lymphs 1.5
Abs monos 0.8
Abs eos 0.2
Abs basos 0.0
Sodium 135
Potassium 3.6
Choloride 104
CO2 20
Anion gap w/o K 11
BUN 18
Creatinine 1.25
GFR non-AA 46
GFR-AA 56
Glucose 81
LD 203
SGOT/AST 30
Alk Phos 118
SGPT/ALT 23
GGT 51
Bilirubin total .3
Protein 6.2
Albumin 3.5
Globulin (calc) 3.0
A:G 1.2
Calcium 8.5
Phosphorous 3.4
Uric acid 5.3
Lipid Panel/CVP
Cholesterol 127
Triglycerides 53
HDL 60
LDL 56
Non HDL chol 67
Chol/HDL Ratio 2.12
Vitamin B12 >5000
Folate 46.5
Ferritin 10
Iron 28
Iron Bind Cap 409
% Saturation 7
PTH Intact (ICMA)
PTH Intact 76.2
Total Calcium 8.7
Ionized Calcium 1.22
Vitamin A 522
Vitamin D Hydroxy 142
Zinc Plasma or Serum 76
PHEW!!!! I didn't type in what the "normal" ranges are because I'm pretty sure you know them but I can go back and put them in if you need me to.
My vitamin regimen now and for the last several months has consisted of 2 Centrum Multi Vites, Selenium (200mcg), Magnesium (500mg), Vit C (1000mg), Heme Iron (12 mg 4 x day), Bariatric Advantage Calcium Chews and Citrical petites (4000mg per day), 50,000iu vit D daily, (now dropped to twice a week due the NP freaking out over my vit D number) Vitamin B12 injection once per week (now stopped completely, again due to NP freak out).
So Kelly, what say you? Any advise or thoughts would be appreciated. I honestly don't know what to do anymore. And believe it or not, these are actually BETTER than my last set. AAARGGGH!
Help me=) Please.
Oh, I like looking at labs. It's no problem.
I don't think I knew about your cardiac arrest. Or maybe I did and it is just one more memory I lost when I had ECT. You would not believe all the stuff I've had to relearn.
Anyway.
I think the low RBC (red blood cells), Hgb (hemaglobin) and Hct (hematocrit) have to do with the low iron.
Your iron is still low. You know who you should talk to about that? Andrea U. At wlsvitagarten.com. She had all kinds of trouble with iron and I think finally got hers straightened out with heme iron. Email her.
You need more protein.
I think you're fine cutting back your D3 to twice a week. Personally, I might cut back the B12 to once a month but I don't think I would cut it out altogether.
Your PTH is on the high side. That's one we actually like on the lower end. When it's high it suggests we may be leaching calcium out of our bones. What happens if we don't take enough calcium or can't absorb it for some reason (like if our D is too low), is that our parathyroid gland produces more PTH which causes calcium to leave our bones and enter our blood to keep the level in our blood good. If the calcium level in our blood gets too low, our heart will not beat correctly, so our body makes the blood, not the bones, the priority.
That might be due to having low vitamin D in the past, in which case it will probably be lower if you get tested again in a few months. Have you had a bone density scan, though?
I don't think I knew about your cardiac arrest. Or maybe I did and it is just one more memory I lost when I had ECT. You would not believe all the stuff I've had to relearn.
Anyway.
I think the low RBC (red blood cells), Hgb (hemaglobin) and Hct (hematocrit) have to do with the low iron.
Your iron is still low. You know who you should talk to about that? Andrea U. At wlsvitagarten.com. She had all kinds of trouble with iron and I think finally got hers straightened out with heme iron. Email her.
You need more protein.
I think you're fine cutting back your D3 to twice a week. Personally, I might cut back the B12 to once a month but I don't think I would cut it out altogether.
Your PTH is on the high side. That's one we actually like on the lower end. When it's high it suggests we may be leaching calcium out of our bones. What happens if we don't take enough calcium or can't absorb it for some reason (like if our D is too low), is that our parathyroid gland produces more PTH which causes calcium to leave our bones and enter our blood to keep the level in our blood good. If the calcium level in our blood gets too low, our heart will not beat correctly, so our body makes the blood, not the bones, the priority.
That might be due to having low vitamin D in the past, in which case it will probably be lower if you get tested again in a few months. Have you had a bone density scan, though?
Kelly
Please note: I AM NOT A DOCTOR. If you want medical advice, talk to your doctor. Whatever I post, there is probably some surgeon or other health care provider somewhere that disagrees with me. If you want to know what your surgeon thinks, then ask him or her. Check out my blog.
I noticed that your Potassium is very low; I found the following on the web:
Normal Results
The normal range is 3.7 to 5.2 mEq/L.
Note: mEq/L = milliequivalent per liter
As your tests show only 3.6, you might want to increase your potassium by eating bananas or other foods rich in the element. This can definitely contribute to heart problems. Check out the info on this by googling "Potassium ranges"
Best wishes,
My goodness, I am so sorry for all the trouble you've had and thank you so much for letting all of us know. That scared me to death when you said it was because of vitamin deficiency.
If you don't mind, I see that you had this cardiac arrest about a year and 8 months after your surgery. Were you lax in taking your vitamins the entire time? If not, how long were you lax in taking your vitamins before your cardiac arrest?
Thank you so much for any info, I think that's helpful to all of us!!
Wynter
If you don't mind, I see that you had this cardiac arrest about a year and 8 months after your surgery. Were you lax in taking your vitamins the entire time? If not, how long were you lax in taking your vitamins before your cardiac arrest?
Thank you so much for any info, I think that's helpful to all of us!!
Wynter
VBG Surgery 4/17/1989 - Revision TO RNY 8/22/2011 - 4 Days Prior To Surgery WT: 309.5
Hi Wynter, sorry it took so long to get back to you - I haven't been on much and then when I am I forget to check for answers to my posts.
I have had malabsorption issues my whole life. After the RnY I was very vigilant for a few months, but eventually starting taking my vites on a hit or miss type basis, so that is what happened. Even worse, I didn't keep up with my labs, which would have alerted me to the problems before they got to such a drastic level. I also have a history of serious potassium issues which was not being adequately addressed (that part I can't take responsibility for - I tried to get three diff docs to look at my potassium, especially after the one year mark and no one thought it was worth monitoring specifically.) And I have been perniciously anemic since I was 19, but it has gotten much, much worse.
So anyway, it was really an amalgamation of factors, but had I kept up with my labs AND been monitoring the results myself as I have since learned to do I likely wouldn't have ended up in such a precarious position. I am just so grateful that for whatever reason, God pulled me out of it.
Feel free to ask any questions you want, I don't mind talking about it - I just don't like to bore folks so I don't bring it up much, other than trying to remind postops to get their labs.
Take Care =)
I have had malabsorption issues my whole life. After the RnY I was very vigilant for a few months, but eventually starting taking my vites on a hit or miss type basis, so that is what happened. Even worse, I didn't keep up with my labs, which would have alerted me to the problems before they got to such a drastic level. I also have a history of serious potassium issues which was not being adequately addressed (that part I can't take responsibility for - I tried to get three diff docs to look at my potassium, especially after the one year mark and no one thought it was worth monitoring specifically.) And I have been perniciously anemic since I was 19, but it has gotten much, much worse.
So anyway, it was really an amalgamation of factors, but had I kept up with my labs AND been monitoring the results myself as I have since learned to do I likely wouldn't have ended up in such a precarious position. I am just so grateful that for whatever reason, God pulled me out of it.
Feel free to ask any questions you want, I don't mind talking about it - I just don't like to bore folks so I don't bring it up much, other than trying to remind postops to get their labs.
Take Care =)
Wow, you have serious absorbtion issues but others are way over the top - very confusing. First off, your iron - according to your hemoglobin and hemacrit - you are still a candidate for a blood transfusion - I don't think they gave you enough blood. When you hit 8.0 is when you are a candidate, so I would ask about getting more blood. You are still dangerously low and maybe they need to try a different type of iron infusion with a higher dose - 5 infusions with a ferritin of 10, something is wrong. Have you had a endoscopy and colonoscopy to check for any source of bleeding to account for such low numbers? Your platelets are great. Your heme iron - you need to break them in half when you take them and don't take them with vitamin C like other iron. I don't think you have you take them separately, I think you can take them together or atleast in 2 doses. You might want to try adding Tender irons from vitalady.com to the heme - many people find success when they take the 2 together - vitalady.com sells tender irons - they are 60mg per capsule and have the vitamin C in them. With levels like yours and the absorbtion like you do, you probably need 4 or 5 of them at a time - you can't take them within 2-4 hours of your calcium or thyroid medication.
Your calcium - you aren't absorbing that either - how are you taking it? You can't absorb more than 650mg at a time and you can't take it within 2-4 hours of the tender irons or thyroid medication but you can take it with the heme iron. You need atleast 2 hours between doses.
Your B12 - I have never seen a level that high. I didn't even think a lab could read it that high - they usually just say greater than 2000. I wouldn't stop them completely because we drop really fast. I take them 3 times per week for a level around 1800. I was in the hospital for 2 month this past winter and I didn't realize that I wasn't getting them and in the 2 months, my level dropped to 400. We drop fast. You might want to do 2 times per month or 1 per month for 3 months and then get rechecked. If you can settle at 2000 that would be great. There is no danger around 2000 or even higher, we just pee out the excess, don't even think 5000 is dangerous. They just freak when they see these numbers.
Your vitamin A is dangerous. I don't know if you have a different range but the only range I have ever seen is 38-98 and high vitamin A is very dangerous. You dont' list vitamin A in your supplements - you must be taking something with A to get that high unless your range is different.
Your folate is high but fine - we like it greater than 24 - again, never seen them measure it greater than 24.
Your D is high but not as dangerous as all the doctors think it is. I Would be careful and cut your dose but not as much as you listed. I had a level that came back greater than 150 and my doctor freaked, they had me stop it completely for 2 weeks from 3 times per week and it went down to 122. Then I cut it to 2 times per week and it went down to 112. I was happy but my Endo still thought it was too high and concerned that I Would end up with kidney stones since my D was so high. Sure enough, the next week I was in emergency surgery for kidney stones blocking my ureters. So, I cut it further to once per week but that was my mistake because I just got my labs back again and after only 2 months since the greater than 150, I am at 59. That is too drastic a cut for me - over 100 points in about 10 weeks. So, I increased back to 2 times per week. I want my levels back around 100. Ideally if I could get them at 80 that would be great but that is hard for me to do,I tend to run around 100-110 on that dose.
So, if you were taking them daily - I would cut to about 4 times per week and get rechecked in 2months and see what happens.
Your protein and albumin are very low - I would try to increase your protein in your diet and if possible, add protein shakes.
your potassium is also low - this you dont' want to fool with = I would ask the doctor for a potassium supplement - low potassium can lead to heart arrythmias.
Your calcium - you aren't absorbing that either - how are you taking it? You can't absorb more than 650mg at a time and you can't take it within 2-4 hours of the tender irons or thyroid medication but you can take it with the heme iron. You need atleast 2 hours between doses.
Your B12 - I have never seen a level that high. I didn't even think a lab could read it that high - they usually just say greater than 2000. I wouldn't stop them completely because we drop really fast. I take them 3 times per week for a level around 1800. I was in the hospital for 2 month this past winter and I didn't realize that I wasn't getting them and in the 2 months, my level dropped to 400. We drop fast. You might want to do 2 times per month or 1 per month for 3 months and then get rechecked. If you can settle at 2000 that would be great. There is no danger around 2000 or even higher, we just pee out the excess, don't even think 5000 is dangerous. They just freak when they see these numbers.
Your vitamin A is dangerous. I don't know if you have a different range but the only range I have ever seen is 38-98 and high vitamin A is very dangerous. You dont' list vitamin A in your supplements - you must be taking something with A to get that high unless your range is different.
Your folate is high but fine - we like it greater than 24 - again, never seen them measure it greater than 24.
Your D is high but not as dangerous as all the doctors think it is. I Would be careful and cut your dose but not as much as you listed. I had a level that came back greater than 150 and my doctor freaked, they had me stop it completely for 2 weeks from 3 times per week and it went down to 122. Then I cut it to 2 times per week and it went down to 112. I was happy but my Endo still thought it was too high and concerned that I Would end up with kidney stones since my D was so high. Sure enough, the next week I was in emergency surgery for kidney stones blocking my ureters. So, I cut it further to once per week but that was my mistake because I just got my labs back again and after only 2 months since the greater than 150, I am at 59. That is too drastic a cut for me - over 100 points in about 10 weeks. So, I increased back to 2 times per week. I want my levels back around 100. Ideally if I could get them at 80 that would be great but that is hard for me to do,I tend to run around 100-110 on that dose.
So, if you were taking them daily - I would cut to about 4 times per week and get rechecked in 2months and see what happens.
Your protein and albumin are very low - I would try to increase your protein in your diet and if possible, add protein shakes.
your potassium is also low - this you dont' want to fool with = I would ask the doctor for a potassium supplement - low potassium can lead to heart arrythmias.
Wow, thanks for your detailed response. I really appreciate it.
My vitamin A shows within range on my lab reports, the range they use is 300-650, and at 522 mine is on the high end but within range. I don't take any kind of vitamin A supplements (excepting whatever is in the 2 Centrum Chewables I take daily), so not sure why it would be high or how to lower it.
In answer to your other questions: yes I have been scoped inside, outside and upside down and they can not figure out the reason for the blood loss. I don't have my periods anymore because they got horribly heavy post op and since I have the blood issues anyway, the doc put me on Depakote. I will follow up with them and ask about possibly getting more blood.
I can try adding more/diffferent type of iron to the heme, but I tend to have pretty bad stomach issues so I'll run that by my doc as well first. I am about to do another set of infusions, plus start getting shots of Epogyn (sp?) which I guess is some kind of medicine inject into your tummy to help with iron absorption.
As far as the potassium, I do take a daily prescribed supplement. The "cardiac arrest" I referred to was technically Ventrical Tachycardia which is also know as Sudden Cardiac Death Syndrome. I had an episode of that back in 2006 due to low potassium and other electrolytes. Since you appear to be in the health care field you are probably aware that the survival rate for ONE episode of V-Tach is 5% if you want to be generous. Surviving two episodes is almost unheard of. There is no doubt in my mind or in any of my physician's minds that I will not survive a 3rd episode. When they brought me into the hospital last August they told me I had the potassium of a cadaver. Nice, huh? So yep, I'm pretty vocal about them watching my electrolyte balances now.
Lastly, as for the calcium, I take 500mg at a time, at least 2 hours apart. I have to get in 4000mg per day so I have 8 doses to take per day.
Now, I have a question for you. You were in the hospital for 2 months? What happened? Hopefully you are okay now?
My vitamin A shows within range on my lab reports, the range they use is 300-650, and at 522 mine is on the high end but within range. I don't take any kind of vitamin A supplements (excepting whatever is in the 2 Centrum Chewables I take daily), so not sure why it would be high or how to lower it.
In answer to your other questions: yes I have been scoped inside, outside and upside down and they can not figure out the reason for the blood loss. I don't have my periods anymore because they got horribly heavy post op and since I have the blood issues anyway, the doc put me on Depakote. I will follow up with them and ask about possibly getting more blood.
I can try adding more/diffferent type of iron to the heme, but I tend to have pretty bad stomach issues so I'll run that by my doc as well first. I am about to do another set of infusions, plus start getting shots of Epogyn (sp?) which I guess is some kind of medicine inject into your tummy to help with iron absorption.
As far as the potassium, I do take a daily prescribed supplement. The "cardiac arrest" I referred to was technically Ventrical Tachycardia which is also know as Sudden Cardiac Death Syndrome. I had an episode of that back in 2006 due to low potassium and other electrolytes. Since you appear to be in the health care field you are probably aware that the survival rate for ONE episode of V-Tach is 5% if you want to be generous. Surviving two episodes is almost unheard of. There is no doubt in my mind or in any of my physician's minds that I will not survive a 3rd episode. When they brought me into the hospital last August they told me I had the potassium of a cadaver. Nice, huh? So yep, I'm pretty vocal about them watching my electrolyte balances now.
Lastly, as for the calcium, I take 500mg at a time, at least 2 hours apart. I have to get in 4000mg per day so I have 8 doses to take per day.
Now, I have a question for you. You were in the hospital for 2 months? What happened? Hopefully you are okay now?
No problem any time. I am not actually in the medical field, I just have alot of experience first hand both from myself and my mother before she died with lots of medical stuff. I do tons of reading and research to learn all that I can. I am not able to work due to all my medical problems, so I spend what time I can on the computer learning about all the supplements, our malabsorbtion issue and anything that can pertain to us. I feel it is very helpful for both myself and in assisting other like yourself. I wish I could work and if I could, I would definitely work in a doctors office or something in the medical field. I do really enjoy it. Anytime I get test results or just a prescription, I come home home and go right to computer to find out either what the drug is or what my test results mean if I dont' already know it. By now, I know what most of it means. I also have about 10 medical books on conditions, diseases and diagnostic tests. So, I am glad to help you anytime.
Back to you - your vitamin A is fine, based on those ranges. There are different types of vitamin A - retinol, beta carotene and I forgot the other one, so depending on which one they are testing and they can also do serum, plasma or whole blood - each having a different range. My doctors tests for Retinol with a range of 38-98 which is the range I have seen with most post ops, but your doctor obviously tests something differnt but as long as it isn't betacarotene, it is fine.
With that level, you don't need to take any vitamin A.
For the blood loss - have they done a urinalysis? Sometimes we can lose blood through our urine and not even know it. I recently had kidney stone surgery and lost alot of blood as a result. It was all through my urine and almost needed a transfusion. Granted, it was so much that I could see it but prior to the surgery, I had large amounts in my urine that showed up in my urinalysis and I didnt know it. At that point, my iron and hemoglobin had dropped quite a bit.
In all of your scopes, have you ever been tested for celiac disease - gluten intolerance? There is also a new diagnosis of non-celiac gluten intolerance for people with all the symptoms but test negative. You mention that you have had problems with absorbtion of iron and B12 since you are a teenager, this could be cause. If you aren't absorbing any of these things (you now absorb the B12 because of injections) and continue to eat gluten you can do major damage. This could also be a cause for not absorbing potassium. There is a blood test but you also need to have a biopsy of your small intestines for confirmation. Unfornately, many times when we go for endoscopies our gastro doctors - mine included are so busy looking for the ulcer or reason for the stomach pain that they fail to do the biopsies of the small intestines - they say they look fine, no ulcers and that is it. They do biopsies of the stomach for hpylori but they need to do more.
Are you seeing a Hematologist? I would think so with all that you have going on and in order to get the IV iron, I would think you would have to go to one. I would seriously talk to him about getting another transfusion with more than just 2 units of blood before using Epogen. When I had a blood transfusion after my surgery this past winter (will explain more below) I was given 5 units of blood, so I think they just didn;t give you enough to only have a hemoglobin of 8 after a blood transfusion, that is usually what people are when they first get one. I looked into Epogen and it has some really serious side effects and is for really last resort patients and they actually say it is for patients with chronic kidney disease on dialysis or cancer patients. People in both of these cases, develop a type of anemia that causes them to not be able to absorb iron. I know this because my uncle was one of them. He had kidney cancer. He got shots to increase his red blood cell count which is what Epogen is. I would strongly recommend you go to the website Epogen.com and read all about it.
As far as the Tender irons that I was recommending - I take them and I have the worst stomach on creation. I have since I am about 3 years old. My mother had to put me on colace at a little girl, not much older than that and I was diagnosed with IBS at 10. I have taken many irons during my lifetime and they all made me sick but the tender irons don't bother me at all plus I can absorb them with no problems.
You said you are due for another set of infusions? How do you do them? When I got them many years ago, not having anything to do with my surgery - had malabsorbtion due to a pancreas problem, I got one very large infusion - the first one lasted 2 months, then the second one lasted 5 months and the third one lasted 6 months, the 4th one was my last and never needed again - pancreas started functioning again.
That is a thought - you might want to do things to check out if your pancreas is functioning. When a pancreas stops functioning, we stop absorbing iron, you can have problems with your blood sugars - either too high or way too low (I had both - first so diabetic that I needed insulin and then all of sudden it went the other way and I was so hypoglycemic that I had to eat every 2 hours or my sugars would drop to 30) Then it all went away. In order to check this out, you need blood tests for amylase and lipase - plus an MRI of your abdomen - looking to see if your pancreas is normal size - mine was atrophied. I went on pancreatic enzymes to help me absorb my food plus the supplements that were needed - I was already on B12 shots and then I got the IV iron and had to carefully watch my sugar levels.
As far as your calcium goes - you are obviously not absorbing it. You mentioned that you take the citrical petites and bariatic advantage chews - do you know that the petites are only 200mg per tablet? If you take 2, you are going to get 400mg and if you take 3, you are going to get 600mg but not sure how you are getting 500mg? The chews are fine, 2 at a time does give you 500mg. 8 doses per day, 2 hours apart - when do you sleep? Do you take thyroid medication, that can't be taken within 2 - 4 hours of your calcium. Thankfully, heme iron can be taken with calcium. I tend to think that it might be the tablets that you aren't absorbing. You might want to do an experiment for 2 months and see what happens with your calcium and PTH levels. Try getting some Calcium citrate lozenges = they are 500mg each, take 1 of them 6 times per day - I know that is a cut in dose but I really think you will absorb the chewables so much better. If you feel better about it, take it 7 times per day. For someone like yourself with such a malabsorbtion problem, you probably need chewables or injectables for your supplements if possible - or atleast capsules - they are easier to absorb than tablets.
For your potassium - I gather you take a prescription potassium every day. One of the problems is that all prescription potassiums are extended release. I just got a prescription recently and when I filled it, it said extended release and I called the pharmacist immediately and she that all pottasium is extended release. The only way to compensate for it is to take a higher dose but then it needs to be watched very carefully. Are yours tablets or capsules? I would recommend asking for capsules and see if they work better. Mine were capsules and work great. I have been having unbearable cramps in my feet and calves for months and no one could figure out why. My potassium was normal. I had a problem with swelling in my feet and ankles, so my PCP gave me lasix and potassium. When I finished the lasix I had leftover potassium so when the cramps continued and actually got worse I was sure it was my potassium. I saw my Endo and had my potassium checked and it was normal, actually better than normal. I have been taking a capsule on days when the cramps get really bad - they wake me up at night and on a day or 2, had trouble walking. Well, it worked. The cramps are gone. She said I could take them periodically as long as it isn't steady if it helps.
You really need to be agressive with your potassium, I do know that V-tach is very serious and that you are very lucky to still be here for me to be writing. Both high and low potassium levels are very dangerous. We have had a few postops here over the years die due to low potassium levels.
Yes, I was in the hospital for 2 months. It all started in October of 2010. My bowels were always very regular since having the gastric bypass. I went everyday after drinking my protein shake - it was like clockwork. Then all of a sudden one day, I didnt go and I thought that was strange but didnt' think to much of it. I had some stomach pain but thought it was just since I didn't go or I had IBS my entire life, figured it was acting up. It was now Tuesday. Well, by Friday I still hadn't moved my bowels. Let me first say, alot of what I am going to say has been told to me because I dont remember a good chunk of 3-4 weeks. At this point, I was in alot of pain. I remembered my surgeon telling us after surgery if we couldnt' go to get some MOM - milk of magnesia and to use for 2 days, so I did that and nothing. By this time I am miserable but it is the weekend. So, his next step was dulcolax suppositories and ultimately a fleet enema. I went to CVS and bought both. Well, first I tried the dulcolax and after 12 hours nothing happened. On Sunday, I tried the enema and again nothing. I was in tons of pain and couldn't go no matter what I tried. In the past when constipated if I stuck my fingers in (I know really gross but when you are desperate, you will do anythign) and this didn't work. I figured, it is Sunday night and didn't think it was an emergency to call the surgeon or go to the ER, so I waited to Monday morning to call my Gastroenterologist (I had called him on Friday but he was on vacation - I didnt' ask for a partner) So, Monday morning came and I called first thing. Normally it takes about 2 weeks for a normal appointment unless there is a real problem,- when I told them the problem they told me to come in right then and there, don't wait even a half an hour. So, I threw on some clothes and drove over - 20minute drive. He took me right away before all the other patients in the waiting room - don't think they appreciated it. He took one look at me and my belly -sent me for an Emergency CT scan - script in hand and told to walk in, they would take me as soon as I got there. They did. I had to drink some discusting stuff which was really difficult with my stomach pain - had hardly eaten in days plus since the bypass, I cuold only drink small amounts at a time. I had the CT and before I could even drive home, there was a message on my answering machine saying I needed to get to my surgeon in New York City - 1 hour away for emergency surgery. I had a bowel obstruction and internal hernia. I had a hard time finding a ride - non of the local ambulances would take me that far since I wasn't in the hospital and none of my friends wanted to take responsibility of me in that condition for such a long car ride. I finally found someone, she is a nurse and even she was afraid. she said I could have died in the ride on the way.
I made it to the hospital and had my surgery - October 26th - pm or early am the 27th, not sure if it was before or after midnight by time they did the surgery. The 27th was my 2 year anniversary. I came through surgery fine and after I think 1 week, I went to a local rehab near my apartment to recover. That is wear all hell broke lose and I basically remember nothin. I vaguely remember a few of my friends coming to see me a couple of times, giving one friend some money to go get me some workout clothes since I had to do rehab 2 times per day. That is the last thing I remember. I don't remember doing any of the rehab, any of the meals, any of the entertainment they had, none of the doctors or nurses - nothing. I was there for 6 days I think. Then one day, a friend of mine came to see me (this is what she tells me) and "I was supposedly asleep" so she left to go back to her husband - he was also a patient. So, about 3 hours later she came back to my room and I was still in the exact same position. She got a little concerned, so she tried to wake me up but she couldnt'. So went as fast as she could to get a nurse and told them what happened and someone finally came to check on me. Well, I was unconscious. It was a good thing my friend came when she did and that she went back or I wouldn't be here writing you. They rushed me to the local hospital to run tests and found out that not only was I unconscious but I was septic and had a perforated colon. They couldnt' treat me. They gave me a 20% chance of living and said I needed to go back into New York city to my surgeon. So, they rushed me by ambulance and back into surgery I went. My surgeon was out of town, so his partner did the surgery - she is a fairly new but very talented bariatric surgeon My surgery was extremely complicated - they only gave me 50% chance even at the big NYC hospital and she got me through it. The surgery was done in 2 parts over 3 days. The first part was just to clean out the massive infection that ravaged my abdomen and pelvic area, she had to remove a large piece of my colon that was dying. She couldn't finish the surgery though - they had to leave the wound open until I was stable in order for them to continue the surgery - they couldnt' keep me under anesthesia any longer. So, they packed the wound and left me unconscious for 3 days in ICU until I was stable enough to endure more surgery. 3 days later, I went back to surgery and she finished everything - I ended up with an iliostomy, this allowed the lower part of my colon time to heal and I was stuck with a bag which was a torturous 3 months of tons of pain, burning and filth. I also had G tube put in my remnant stomach for extra fluids, protein feedings and they used it for when I had CT scans to put the high volume fluids that I couldnt' drink. After the surgery, I was in ICU for 1 week, most of which I was so out of it, I couldn't even press the pain button - my brother said I couldn't find it or didnt' know what it was. They had to press it for me which usually isnt' allowed but they got permission since I couldnt' do it myself. Finally after 1 week, I became aware of my surroundings and then the real pain set in, the frustration and embarrassment. I couldnt' do anything for myself. I couldn't move on my own, not even my own legs - I could move my arms pretty well but not my legs or lower body. I had no strength. In order to change positions in bed, I had to have 2 or 3 nurses lift me up and turn me. In order to go to the bathroom, I needed 2 people to help me out of bed to a commode - I can't use a bedpan. Since I couldn't move my legs or walk, they had to hold me up and practically carry me - thank goodness I had lost all my weight. It took about 2 weeks before I could even take my first step and 6 weeks before I could walk down the hall. I developed a small bedsore which was extremely painful because due to my terrible tailbone pain, I was limited in the positions I could lie in. I had to have an aide wash me daily, sometimes they came 2 times per day and they wouldn't let me say no - not now. It was mortifying to have someone wash you, they didnt' do it in a way to make you not feel ashamed- they would say spread your legs, so I can get in there and just pour a cup of water in - not fun. then to change the sheets while you are in bed, you have to keep rolling side to side but when you have a huge incision down your belly from breast bone to pelvis, rolling is quite painful plus I had to do it slowly and they didnt' have patience and wanted to help and would just push and I would scream. They did that once and never again. I told them if they did it again, they would never wash me again and still have a job. That had to be one of the most painful experiences of my stay - thought I ripped my healing belly open.
Due to the complexities of my surgery, they had to leave the incision open to heal from the inside out. They said it could take months which it did. While in the hospital, I had a wound vac which was some machine hooked up some foam that was put in the open wound and transmits oxygen to make it heal faster. It isnt' fun. They change the foam every 3 days and that is unbelievably painful - gave me a morphine injection prior to doing it but it barely made a dent in the pain. I was also losing weight at about a pound a day at one point so they had to give me protein supplements. Every night, for 14hours I was hooked up to an IV pole to my G tube for feedings of very high protein - total of 125 grams per day plus what I got from food. This did slow down the weight loss but over all, I lost 25 pounds while in the hospital from October 26 to December 17 - almost 2 months. They sent me to place to recup for a little while called Cavalry - it is actually a hospice for cancer patients but they are welknown for there wound care and that is what I needed. None of the rehabs would take me because of the fact that I had the wound vac and IV nutrition. After one week there (I hated it - I was in bed all day long - they didnt' let me do anything), I had some complications and had to go back to the hospital for some tests. It turned out to be okay but they let me stay there since the other place wasnt' doing anything for me. They took out the wound vac and I went home 1 week later. I had tons of help at home - daily nurses for dressing changes, daily aides to help me with everything - cooking, cleaning, laundry, shopping and anything I needed = and a physical therapist to help me get my strength back. They all came for about a month - the only bad part was that medicare has a stupid rule that as long as any of them come, I have to be housebound other than to go to the doctor. If I even go to the pharmacy or the supermarket to get something with my aide, I lost my help. It was crazy but I was going stir crazy - I couldnt' stay in anymore so I told them to stop coming. I was able to continue 1 of the aides through medicaid - they dont' have that rule and I continue to have the aide to help me with these things but only 2 days per week.
Then in February, when I finally got my strength back I went in for yet another surgery - to reverse the iliostomy - was waiting a long time for this. Having an iliostomy has to be the worst experience of my life. I used to cry every night - after eating, it would drain into the bag and it burned so bad - each time reburning the skin and there was nothing we could do to stop this. It kept leaking, bursting and just plain annoying. It kept me up everynight - having to empty every 1-2 hours and had to sleep sitting up because lying down caused it to leak. By time I had it reversed after 3 months, the skin around it was raw - it was actually burned - it took about 2months to heal. So, it was finally reversed and I was in the hospital this time for 1 week but this time I was able to come home - no rehab. After my prior experiences - my surgeon wasn't keen on sending me anywhere. So, I went home and again got services at home. This surgery which there was a chance when she got in there, couldn't be done but thankfully it all went well. It reconnected and all seemed fine. I wouldn't know until I had my first bowel movement for sure but that could take weeks or longer until the bowel wakes up. SO I had to be patient. This surgery was unbearably painful. I don't know why but I was in agony. They had to call in pain management and up my pain box - I use dilaudid which works better than morphine. At first I got the IV morphine inthe box but very high dose (I am normally on narcotics for chronic pain in spine and fibromyalgia, so I need more than most) and then they switched me to pills. At first this didn't work, so they had to have them come talk to me and I asked what dose was I on with the box and what am I on now and there was a huge difference - most people after 2 or 3 days dont' need as much but I did, so they made the convertion and increased it to the equivalent to the dose of the box but in pill form. When I went home, they gave me this high dose also and had to continue for a long time. I am still on dilaudid some days and percocet other days plus I wear the fentanyl patch (duragesic) - I am not sure why I still have such terrible pain - can't wear anything that touches my stomach or waist - even underwear and pants are tough - I always walk with my pants undone and just had to buy bikini underwear because the higher underwear was putting pressure on my abdomen. It took about 1month for my bowels to wake up. My surgeon told me to take 2 colace and senokot a day to prevent constipation but I had the opposite problem since surgery - I now had diarhea and massive amounts of it and non-stop. It was horrible. It turned out, I Was now severely lactose intolerant which I was years ago but after my gastric bypass it went away and I started dumping also and I mean massive dumping - no other symptoms just massive diarhea - you never saw anything like it in your life and it would go on for hours. This went on for months. Finally, I gave up dairy completely - even using lactaid pills didnt' work - I was up to using 4 lactaid pills at a time and it didn't work, so I gave it up and had to stop the lactaid milk too, so now I use soy milk and seem to be okay for now. Noticed the other day that I am having rouble with the Whey protein through - has milk in it. Next time will try some lactaid with it and see what happens. I can tolerate sugar now but fat in large doses still causes me to dump,All in all, between the 4 surgeries, I lost 45 pounds and I was now way too skinny. I needed to gain weight or they were going to put me back on the IV nutrition. I had to eat large amounts of food and high calorie. I was having trouble with the protein shakes, so I did them occasionally but not often. It was strange but I was eating everything that I was taught not to eat and for a long time it just got me to maintain. At first, I Finally gained about 4 pounds but that wasn't enough and then I got sick and lost them. So, finally my Endocrinologist put me on Pancreatic enzymes - she thought it wuold help with the diarhea and help me gain weight. It did both. The diarhea slowed down and I gained 12 pounds. So, I stopped them because I didnt' want to continue gaining that fast but they did the trick. I still have room to gain some more but if I stay where I am now, I will be happy.
I just found out on Tuesday that because of being in bed for so long and from having so many intestinal surgeries, they put me at a higher risk for osteoporosis. I was already high risk because of family history and I went into menopause at the age of 46- the day of my RNY. I just had my DEXA scan last week adn found out that I have Osteopenia. It got so much worse in the past 2 years, my numbers were great 2 years ago - that was 1 year post op, now I am 3 years postop.
So, although I am healed, I still have daily pain. I see my surgeon tomorrow. Hopefully she will let me go for a CT scan to see if anything is going on - she did say that I most definitely have tons of scar tissue and a possible hernia (I am bringing her an old CT but it was done with no oral or IV contrast since it was for kidneys, so I am not sure what she will see on it without contrast.)
I am sorry this is so long, when I am tired I tend to ramble. I do hope this make sense. I have never updated my blog, but I am going to save this post to my hard drive and reread it at a later time and hopefully post most of it, so I dont' have to keep retyping it when people ask. As you can see, it is long and complicated. I hope I didnt leave anything out.
I wish you all the best and hope things improve. Keep me posted on how things are going,. Thanks for listening.
Back to you - your vitamin A is fine, based on those ranges. There are different types of vitamin A - retinol, beta carotene and I forgot the other one, so depending on which one they are testing and they can also do serum, plasma or whole blood - each having a different range. My doctors tests for Retinol with a range of 38-98 which is the range I have seen with most post ops, but your doctor obviously tests something differnt but as long as it isn't betacarotene, it is fine.
With that level, you don't need to take any vitamin A.
For the blood loss - have they done a urinalysis? Sometimes we can lose blood through our urine and not even know it. I recently had kidney stone surgery and lost alot of blood as a result. It was all through my urine and almost needed a transfusion. Granted, it was so much that I could see it but prior to the surgery, I had large amounts in my urine that showed up in my urinalysis and I didnt know it. At that point, my iron and hemoglobin had dropped quite a bit.
In all of your scopes, have you ever been tested for celiac disease - gluten intolerance? There is also a new diagnosis of non-celiac gluten intolerance for people with all the symptoms but test negative. You mention that you have had problems with absorbtion of iron and B12 since you are a teenager, this could be cause. If you aren't absorbing any of these things (you now absorb the B12 because of injections) and continue to eat gluten you can do major damage. This could also be a cause for not absorbing potassium. There is a blood test but you also need to have a biopsy of your small intestines for confirmation. Unfornately, many times when we go for endoscopies our gastro doctors - mine included are so busy looking for the ulcer or reason for the stomach pain that they fail to do the biopsies of the small intestines - they say they look fine, no ulcers and that is it. They do biopsies of the stomach for hpylori but they need to do more.
Are you seeing a Hematologist? I would think so with all that you have going on and in order to get the IV iron, I would think you would have to go to one. I would seriously talk to him about getting another transfusion with more than just 2 units of blood before using Epogen. When I had a blood transfusion after my surgery this past winter (will explain more below) I was given 5 units of blood, so I think they just didn;t give you enough to only have a hemoglobin of 8 after a blood transfusion, that is usually what people are when they first get one. I looked into Epogen and it has some really serious side effects and is for really last resort patients and they actually say it is for patients with chronic kidney disease on dialysis or cancer patients. People in both of these cases, develop a type of anemia that causes them to not be able to absorb iron. I know this because my uncle was one of them. He had kidney cancer. He got shots to increase his red blood cell count which is what Epogen is. I would strongly recommend you go to the website Epogen.com and read all about it.
As far as the Tender irons that I was recommending - I take them and I have the worst stomach on creation. I have since I am about 3 years old. My mother had to put me on colace at a little girl, not much older than that and I was diagnosed with IBS at 10. I have taken many irons during my lifetime and they all made me sick but the tender irons don't bother me at all plus I can absorb them with no problems.
You said you are due for another set of infusions? How do you do them? When I got them many years ago, not having anything to do with my surgery - had malabsorbtion due to a pancreas problem, I got one very large infusion - the first one lasted 2 months, then the second one lasted 5 months and the third one lasted 6 months, the 4th one was my last and never needed again - pancreas started functioning again.
That is a thought - you might want to do things to check out if your pancreas is functioning. When a pancreas stops functioning, we stop absorbing iron, you can have problems with your blood sugars - either too high or way too low (I had both - first so diabetic that I needed insulin and then all of sudden it went the other way and I was so hypoglycemic that I had to eat every 2 hours or my sugars would drop to 30) Then it all went away. In order to check this out, you need blood tests for amylase and lipase - plus an MRI of your abdomen - looking to see if your pancreas is normal size - mine was atrophied. I went on pancreatic enzymes to help me absorb my food plus the supplements that were needed - I was already on B12 shots and then I got the IV iron and had to carefully watch my sugar levels.
As far as your calcium goes - you are obviously not absorbing it. You mentioned that you take the citrical petites and bariatic advantage chews - do you know that the petites are only 200mg per tablet? If you take 2, you are going to get 400mg and if you take 3, you are going to get 600mg but not sure how you are getting 500mg? The chews are fine, 2 at a time does give you 500mg. 8 doses per day, 2 hours apart - when do you sleep? Do you take thyroid medication, that can't be taken within 2 - 4 hours of your calcium. Thankfully, heme iron can be taken with calcium. I tend to think that it might be the tablets that you aren't absorbing. You might want to do an experiment for 2 months and see what happens with your calcium and PTH levels. Try getting some Calcium citrate lozenges = they are 500mg each, take 1 of them 6 times per day - I know that is a cut in dose but I really think you will absorb the chewables so much better. If you feel better about it, take it 7 times per day. For someone like yourself with such a malabsorbtion problem, you probably need chewables or injectables for your supplements if possible - or atleast capsules - they are easier to absorb than tablets.
For your potassium - I gather you take a prescription potassium every day. One of the problems is that all prescription potassiums are extended release. I just got a prescription recently and when I filled it, it said extended release and I called the pharmacist immediately and she that all pottasium is extended release. The only way to compensate for it is to take a higher dose but then it needs to be watched very carefully. Are yours tablets or capsules? I would recommend asking for capsules and see if they work better. Mine were capsules and work great. I have been having unbearable cramps in my feet and calves for months and no one could figure out why. My potassium was normal. I had a problem with swelling in my feet and ankles, so my PCP gave me lasix and potassium. When I finished the lasix I had leftover potassium so when the cramps continued and actually got worse I was sure it was my potassium. I saw my Endo and had my potassium checked and it was normal, actually better than normal. I have been taking a capsule on days when the cramps get really bad - they wake me up at night and on a day or 2, had trouble walking. Well, it worked. The cramps are gone. She said I could take them periodically as long as it isn't steady if it helps.
You really need to be agressive with your potassium, I do know that V-tach is very serious and that you are very lucky to still be here for me to be writing. Both high and low potassium levels are very dangerous. We have had a few postops here over the years die due to low potassium levels.
Yes, I was in the hospital for 2 months. It all started in October of 2010. My bowels were always very regular since having the gastric bypass. I went everyday after drinking my protein shake - it was like clockwork. Then all of a sudden one day, I didnt go and I thought that was strange but didnt' think to much of it. I had some stomach pain but thought it was just since I didn't go or I had IBS my entire life, figured it was acting up. It was now Tuesday. Well, by Friday I still hadn't moved my bowels. Let me first say, alot of what I am going to say has been told to me because I dont remember a good chunk of 3-4 weeks. At this point, I was in alot of pain. I remembered my surgeon telling us after surgery if we couldnt' go to get some MOM - milk of magnesia and to use for 2 days, so I did that and nothing. By this time I am miserable but it is the weekend. So, his next step was dulcolax suppositories and ultimately a fleet enema. I went to CVS and bought both. Well, first I tried the dulcolax and after 12 hours nothing happened. On Sunday, I tried the enema and again nothing. I was in tons of pain and couldn't go no matter what I tried. In the past when constipated if I stuck my fingers in (I know really gross but when you are desperate, you will do anythign) and this didn't work. I figured, it is Sunday night and didn't think it was an emergency to call the surgeon or go to the ER, so I waited to Monday morning to call my Gastroenterologist (I had called him on Friday but he was on vacation - I didnt' ask for a partner) So, Monday morning came and I called first thing. Normally it takes about 2 weeks for a normal appointment unless there is a real problem,- when I told them the problem they told me to come in right then and there, don't wait even a half an hour. So, I threw on some clothes and drove over - 20minute drive. He took me right away before all the other patients in the waiting room - don't think they appreciated it. He took one look at me and my belly -sent me for an Emergency CT scan - script in hand and told to walk in, they would take me as soon as I got there. They did. I had to drink some discusting stuff which was really difficult with my stomach pain - had hardly eaten in days plus since the bypass, I cuold only drink small amounts at a time. I had the CT and before I could even drive home, there was a message on my answering machine saying I needed to get to my surgeon in New York City - 1 hour away for emergency surgery. I had a bowel obstruction and internal hernia. I had a hard time finding a ride - non of the local ambulances would take me that far since I wasn't in the hospital and none of my friends wanted to take responsibility of me in that condition for such a long car ride. I finally found someone, she is a nurse and even she was afraid. she said I could have died in the ride on the way.
I made it to the hospital and had my surgery - October 26th - pm or early am the 27th, not sure if it was before or after midnight by time they did the surgery. The 27th was my 2 year anniversary. I came through surgery fine and after I think 1 week, I went to a local rehab near my apartment to recover. That is wear all hell broke lose and I basically remember nothin. I vaguely remember a few of my friends coming to see me a couple of times, giving one friend some money to go get me some workout clothes since I had to do rehab 2 times per day. That is the last thing I remember. I don't remember doing any of the rehab, any of the meals, any of the entertainment they had, none of the doctors or nurses - nothing. I was there for 6 days I think. Then one day, a friend of mine came to see me (this is what she tells me) and "I was supposedly asleep" so she left to go back to her husband - he was also a patient. So, about 3 hours later she came back to my room and I was still in the exact same position. She got a little concerned, so she tried to wake me up but she couldnt'. So went as fast as she could to get a nurse and told them what happened and someone finally came to check on me. Well, I was unconscious. It was a good thing my friend came when she did and that she went back or I wouldn't be here writing you. They rushed me to the local hospital to run tests and found out that not only was I unconscious but I was septic and had a perforated colon. They couldnt' treat me. They gave me a 20% chance of living and said I needed to go back into New York city to my surgeon. So, they rushed me by ambulance and back into surgery I went. My surgeon was out of town, so his partner did the surgery - she is a fairly new but very talented bariatric surgeon My surgery was extremely complicated - they only gave me 50% chance even at the big NYC hospital and she got me through it. The surgery was done in 2 parts over 3 days. The first part was just to clean out the massive infection that ravaged my abdomen and pelvic area, she had to remove a large piece of my colon that was dying. She couldn't finish the surgery though - they had to leave the wound open until I was stable in order for them to continue the surgery - they couldnt' keep me under anesthesia any longer. So, they packed the wound and left me unconscious for 3 days in ICU until I was stable enough to endure more surgery. 3 days later, I went back to surgery and she finished everything - I ended up with an iliostomy, this allowed the lower part of my colon time to heal and I was stuck with a bag which was a torturous 3 months of tons of pain, burning and filth. I also had G tube put in my remnant stomach for extra fluids, protein feedings and they used it for when I had CT scans to put the high volume fluids that I couldnt' drink. After the surgery, I was in ICU for 1 week, most of which I was so out of it, I couldn't even press the pain button - my brother said I couldn't find it or didnt' know what it was. They had to press it for me which usually isnt' allowed but they got permission since I couldnt' do it myself. Finally after 1 week, I became aware of my surroundings and then the real pain set in, the frustration and embarrassment. I couldnt' do anything for myself. I couldn't move on my own, not even my own legs - I could move my arms pretty well but not my legs or lower body. I had no strength. In order to change positions in bed, I had to have 2 or 3 nurses lift me up and turn me. In order to go to the bathroom, I needed 2 people to help me out of bed to a commode - I can't use a bedpan. Since I couldn't move my legs or walk, they had to hold me up and practically carry me - thank goodness I had lost all my weight. It took about 2 weeks before I could even take my first step and 6 weeks before I could walk down the hall. I developed a small bedsore which was extremely painful because due to my terrible tailbone pain, I was limited in the positions I could lie in. I had to have an aide wash me daily, sometimes they came 2 times per day and they wouldn't let me say no - not now. It was mortifying to have someone wash you, they didnt' do it in a way to make you not feel ashamed- they would say spread your legs, so I can get in there and just pour a cup of water in - not fun. then to change the sheets while you are in bed, you have to keep rolling side to side but when you have a huge incision down your belly from breast bone to pelvis, rolling is quite painful plus I had to do it slowly and they didnt' have patience and wanted to help and would just push and I would scream. They did that once and never again. I told them if they did it again, they would never wash me again and still have a job. That had to be one of the most painful experiences of my stay - thought I ripped my healing belly open.
Due to the complexities of my surgery, they had to leave the incision open to heal from the inside out. They said it could take months which it did. While in the hospital, I had a wound vac which was some machine hooked up some foam that was put in the open wound and transmits oxygen to make it heal faster. It isnt' fun. They change the foam every 3 days and that is unbelievably painful - gave me a morphine injection prior to doing it but it barely made a dent in the pain. I was also losing weight at about a pound a day at one point so they had to give me protein supplements. Every night, for 14hours I was hooked up to an IV pole to my G tube for feedings of very high protein - total of 125 grams per day plus what I got from food. This did slow down the weight loss but over all, I lost 25 pounds while in the hospital from October 26 to December 17 - almost 2 months. They sent me to place to recup for a little while called Cavalry - it is actually a hospice for cancer patients but they are welknown for there wound care and that is what I needed. None of the rehabs would take me because of the fact that I had the wound vac and IV nutrition. After one week there (I hated it - I was in bed all day long - they didnt' let me do anything), I had some complications and had to go back to the hospital for some tests. It turned out to be okay but they let me stay there since the other place wasnt' doing anything for me. They took out the wound vac and I went home 1 week later. I had tons of help at home - daily nurses for dressing changes, daily aides to help me with everything - cooking, cleaning, laundry, shopping and anything I needed = and a physical therapist to help me get my strength back. They all came for about a month - the only bad part was that medicare has a stupid rule that as long as any of them come, I have to be housebound other than to go to the doctor. If I even go to the pharmacy or the supermarket to get something with my aide, I lost my help. It was crazy but I was going stir crazy - I couldnt' stay in anymore so I told them to stop coming. I was able to continue 1 of the aides through medicaid - they dont' have that rule and I continue to have the aide to help me with these things but only 2 days per week.
Then in February, when I finally got my strength back I went in for yet another surgery - to reverse the iliostomy - was waiting a long time for this. Having an iliostomy has to be the worst experience of my life. I used to cry every night - after eating, it would drain into the bag and it burned so bad - each time reburning the skin and there was nothing we could do to stop this. It kept leaking, bursting and just plain annoying. It kept me up everynight - having to empty every 1-2 hours and had to sleep sitting up because lying down caused it to leak. By time I had it reversed after 3 months, the skin around it was raw - it was actually burned - it took about 2months to heal. So, it was finally reversed and I was in the hospital this time for 1 week but this time I was able to come home - no rehab. After my prior experiences - my surgeon wasn't keen on sending me anywhere. So, I went home and again got services at home. This surgery which there was a chance when she got in there, couldn't be done but thankfully it all went well. It reconnected and all seemed fine. I wouldn't know until I had my first bowel movement for sure but that could take weeks or longer until the bowel wakes up. SO I had to be patient. This surgery was unbearably painful. I don't know why but I was in agony. They had to call in pain management and up my pain box - I use dilaudid which works better than morphine. At first I got the IV morphine inthe box but very high dose (I am normally on narcotics for chronic pain in spine and fibromyalgia, so I need more than most) and then they switched me to pills. At first this didn't work, so they had to have them come talk to me and I asked what dose was I on with the box and what am I on now and there was a huge difference - most people after 2 or 3 days dont' need as much but I did, so they made the convertion and increased it to the equivalent to the dose of the box but in pill form. When I went home, they gave me this high dose also and had to continue for a long time. I am still on dilaudid some days and percocet other days plus I wear the fentanyl patch (duragesic) - I am not sure why I still have such terrible pain - can't wear anything that touches my stomach or waist - even underwear and pants are tough - I always walk with my pants undone and just had to buy bikini underwear because the higher underwear was putting pressure on my abdomen. It took about 1month for my bowels to wake up. My surgeon told me to take 2 colace and senokot a day to prevent constipation but I had the opposite problem since surgery - I now had diarhea and massive amounts of it and non-stop. It was horrible. It turned out, I Was now severely lactose intolerant which I was years ago but after my gastric bypass it went away and I started dumping also and I mean massive dumping - no other symptoms just massive diarhea - you never saw anything like it in your life and it would go on for hours. This went on for months. Finally, I gave up dairy completely - even using lactaid pills didnt' work - I was up to using 4 lactaid pills at a time and it didn't work, so I gave it up and had to stop the lactaid milk too, so now I use soy milk and seem to be okay for now. Noticed the other day that I am having rouble with the Whey protein through - has milk in it. Next time will try some lactaid with it and see what happens. I can tolerate sugar now but fat in large doses still causes me to dump,All in all, between the 4 surgeries, I lost 45 pounds and I was now way too skinny. I needed to gain weight or they were going to put me back on the IV nutrition. I had to eat large amounts of food and high calorie. I was having trouble with the protein shakes, so I did them occasionally but not often. It was strange but I was eating everything that I was taught not to eat and for a long time it just got me to maintain. At first, I Finally gained about 4 pounds but that wasn't enough and then I got sick and lost them. So, finally my Endocrinologist put me on Pancreatic enzymes - she thought it wuold help with the diarhea and help me gain weight. It did both. The diarhea slowed down and I gained 12 pounds. So, I stopped them because I didnt' want to continue gaining that fast but they did the trick. I still have room to gain some more but if I stay where I am now, I will be happy.
I just found out on Tuesday that because of being in bed for so long and from having so many intestinal surgeries, they put me at a higher risk for osteoporosis. I was already high risk because of family history and I went into menopause at the age of 46- the day of my RNY. I just had my DEXA scan last week adn found out that I have Osteopenia. It got so much worse in the past 2 years, my numbers were great 2 years ago - that was 1 year post op, now I am 3 years postop.
So, although I am healed, I still have daily pain. I see my surgeon tomorrow. Hopefully she will let me go for a CT scan to see if anything is going on - she did say that I most definitely have tons of scar tissue and a possible hernia (I am bringing her an old CT but it was done with no oral or IV contrast since it was for kidneys, so I am not sure what she will see on it without contrast.)
I am sorry this is so long, when I am tired I tend to ramble. I do hope this make sense. I have never updated my blog, but I am going to save this post to my hard drive and reread it at a later time and hopefully post most of it, so I dont' have to keep retyping it when people ask. As you can see, it is long and complicated. I hope I didnt leave anything out.
I wish you all the best and hope things improve. Keep me posted on how things are going,. Thanks for listening.
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