Unidentified abdominal pain, colonoscopies and other complaining

Hi Guys.  It's been awhile since I really took the time to post; I've wanted to, just never took the time.  Basically I was gonna wait until I had an answer to my issue, or the situation resolved itself, or something.  But as I sit here drinking that god-forsaken colonoscopy solution and trying to keep down each swallow, I thought I might distract myself as well as possibly give a heads up to someone who may being going through or will go through something similar.

The last 5+  years have been some of the very best of my life. If I had to do it over again, I would.  Maybe sooner than I finally did, but I definitely would.

I can't say I haven't had any issues, because I have.  I didn't keep up with my vitamins or blood work which led to a potassium deficiency so severe that it should have been fatal.  My heart went into  ventrical tachycardia and I had alreadly had one episode of that pre-op.  Survival rates for patients in v-tach are around 5% . Those who have a second episode have a less than 1% chance of surviving.  Like  a lot of us, I am a true medical miracle.  More incidentally,  I also have a patella surrounded by nothing but de-generated bone.  I am trying to wait until I'm a little older (I"m 50) for the recommended total knee replacement.  My weight loss helped this considerably but still I, again like a lot of us, am no stranger to pain.  Even severe pain.

Other than that and having developed pernicious anemia things have been good.  I re-gained 40lbs which I take total responsibility for.  I have seven pounds left to re-lose.  I love my life.

However.  In March of 2013 I had a terrifying instance of abdominal pain in the middle of the night.  I've spent enough time in hospitals and I wasn't going back unless there was no choice so I rode it out.  The pain happened again, randomly in the summer, then increasingly into the fall and in December came back with a vengeance.  With the exception of a few days here and there it has been a constant in my life.  I am not exaggerating when I say childbirth was easier than these abdominal spasms.

My PCP ordered an MRI in January, which showed no abnormalities.  He explained that some folks who have abdominal surgeries develop pain from adhesions that cannot be seen by MRI, CT scan or any other tests.  They can only be identified  by going in and having a look-see.  It was not a procedure he recommended because apparently, every time you do any type of surgery, lap or open, more adhesions can develop, making everything worse.  I was not satisfied with his answer but quite frankly didn't pursue it and just prayed he was correct and that the pain would lessen.  I was put on "pain  management" which in my case equaled a healthy portion of fentanyl in patch form with breakthrough meds as needed.

At the end of February with no relief, and the pain even worse, I checked into the ER.  They thought they saw a blockage but after a few days of bonding with the ENG tube and hanging out on bowel and belly rest it seemed to resolve itself and they sent me home.  I again just prayed it would stay bearable.  I had lost hope of it's going away completely.

Fast forward to today. Over 4 1/2 months of pretty much continous pain, with frequent episodes so bad that I literally can not move.  You know people scream in pain?  When my pain comes I don't have the energy or ability to scream.   All I can do is lay with a hot pack and let the waves of this unbearable-ness wash over me.  Don't get me wrong. It's not like that 24/7.  But it's like that at least a few days out of every week.  My life has become limited to home, and once again I feel like the shut-in I was when I was so obese and sick.

Finally, my PCP referred me to a surgeon.  The surgeon was stunned that no one had yet ordered an endoscopy or a colonscopy, and ordered both.  Today is my appointment.  I'm going back to the same gastro-enterologist *****ferred me to my WLS for my near total gastrectomy back in Dec 2008 (I don't have a  "standard" Rny.  I have no blind stomach.   I had severe non-healing ulcers that caused my pyloric channel to scar over multiple times which had caused my at the time endless visits to the ER.)  I love this guy.  Hadn't seen him since pre-op and he was so thrilled for me that I had lost the weight and was still doing well.  (weight wise at least).  Side note:  I must be the luckiest woman in the world.  99% of my docs have been absolutely fabulous and I am so grateful.

Anywho. All that brings me to now - this moment.  The gagging-down-the-prep-mix moment.  I have to keep literally telling myself that I can do hard things.  Because this stuff has got to be the worst of the whole colonoscopy process.  There used to be a mag-citrate mix that you could use instead which had less volume, but I have since developed Stage 3 kidney disease and they wanted to stay far away from some kind of renal failure.   In case you haven't noticed, this is the whiniest of the whiney parts.  God this stuff is horrific.

If you've read this far - believe me, the surgery IS still worth it.  I don't know what the appointment will show, if anything.  If they can see nothing wrong this afternoon the surgeon will (finally) go in with a scope.  I know without a doubt something is wrong in there, and in spite of having excellent doctors to work with have had to push for and pay for every test.  Sooner or later I'll have my answer.  I just wish I'd started pushing sooner, like after the first two or ten episodes.

Moral of the story:  Never ignore abdominal pain.  Don't wait for it to get so bad it's only controllable by morphine.  Make them test you until they find something.  I hope none of you ever have to deal with this, but from what I understand, chances are you may.  The hospital surgeon told me that finding a hidden hernia that can only be seen by scope, or finding adhesions only visible the same way are becoming the hallmark of  WLS.

If you don't hear from me tonight or tomorrow, hopefully it's because I'll be in the hospital getting whatever it is fixed.  But I'll come back and check in at some point.

Thanks for listening, and for electronically holding my hand as I drank that awful stuff.  Be well, and I'll catch anybody who cares to find out up with the results as soon as I can get back online.

amy

 

Wow.  Sorry to hear what you've been going through.  It sounds awful.

It's a double edge sword to say that "I hope that they find something" because you never know what it could be.  But the not knowing would drive me crazy.  Please let us know how things turn out and I hope you find some relief soon.

Wow I feel for you. I am just starting and that doesn't sound very good. But I am still going through with it. I don't want to have a heart attack which if I don't do something my chances are very high that I will someday Probably sooner than later. I will take your advise, if it happens to me I will not wait and will demand that the two test be done. I do know how gross it is to drink the things your drinking right now so think happy thoughts if you can. I hope this test shows what is going on in there. I had back surgery years ago and 1 year later I was back in the O.R. because they thought I ruptured another disc but as it turned out it was adhesions from the first surgery. So I know a little about adhesions. Please let us know how things turn out for you. I wish you the best.

Good grief, Amy, you poor thing! You have absolutely been through the wringer! I'm amazed and inspired that somehow you've managed to hold on to your positive attitude.

Keep on drinking, hon. You can do it, you've shown without doubt that you can do hard things! I'll swing a chicken for you and hope for the best possible outcome for all your testing.

Come back and keep us posted on what is going on. I will swing a chicken for you.

Well, I'm back.  Here's the good, the bad and the ugly.

The Good: My pouch is still tiny and the stoma shows absolutely no stretching.  I'm pretty sure that's why I was able to re-lose most of my re-gain

The Bad:  The scope wouldn't reach far enough through my small intestine to the site where Dr. Srikanth had connected everything.  So they couldn't see that part.  Because of:

The Ugly:  My bowel prep was apparently insufficient.  The GI doc says it happens sometimes with small pouches.  I did drink all of the stuff, but it just didn't work as fast as it should have (which doesn't surprise me because I've always had issues on and off if slow intestinal movement.). So I get to do the whole thing over again next week if possible, except with a 2-day prep instead of a 1-day prep.  Yay.

And btw, I certainly didn't post to scare anyone away from surgery.  I'd do it again in a heartbeat even with everything that's happened.  I just wish I'd been pushier about this abdominal pain sooner. 

Thanks for listening everyone.

 

I am so sorry to hear about your problems.  I hope they can resolve them without surgery.  It seems a lot of post ops have issues with unexplained abdominal pain.  In my case I believe it is more due to the 10 abdominal surgeries I have had rather then the type of surgeries.  I am just a mess of adhesion's and like you said, those things are hard to diagnose.

I spent a few days in the hospital around Christmas last year with a bowel obstruction.  Fortunately it was resolved without surgery.  I saw my doctor for a follow up recently and she said she was very surprised they didn't operate so I really dodged a bullet.  The last thing I need is another surgery causing more adhesion's.  The good news is that since then I haven't had the pain as bad.  They way they treated me in the hospital was to make sure I was completely cleaned out.  Enemas, laxatives and suppositories.  No fun but it did the job so now when I feel the pain coming on I do a bowel cleanse.  Fortunately it has only been once.  I have had issues with constipation and thought I had it handled with Miralax but apparently you can have regular bowel movements and still have an obstruction.  Things just move past until things build up and block things, much like what happens when arteries get clogged.  So now I am very diligent and even at the first hit of constipation I use a laxative and make sure nothing is left behind, if you know what I mean.  It is much easier to deal with if I catch it early and only once dose is needed to take care of things.

So sorry you have been through all of this! I truly hope you get better soon!

Any, I'm so sorry you are going through this.  I spent almost 18 months with bouts of intermittent, but severe abdominal pain that started increasing in frequency.  All scans showed nothing. My RNY surgeon and a general surgeon I had used a couple of times prior to my RNY both agreed that it was likely adhesions but didn't want to operate because of the "more adhesions" issue.  The second surgeon did a referral for me to go to the Cleveland Clinic for evaluation.  While I waited on that, I was going to get a third opinion from the undisputed top RNY surgeon in town.  

Before I could see the third surgeon or make the trip to Cleveland, my RNY surgeon found out that I was in medical leave because the pain was so severe and frequent, and she agreed to do the exploratory surgery.  As soon as she got in there she found  a huge mess of adhesions that were cause my intestine to "grow into" the mesh she had used for my open hernia repair a couple of years before.  It took quite a while to remove the adhesions (and the mesh!) and free my intestine.  She said eventually it would she  turned into a full intestinal blockage before it showed up on anything!

I have not had a single episode of pain since I healed from the surgery itself (another open surgery {sigh})! I hope your issue is as easy to find.

As far as your knees, I understand wanting to wait since they can only do it twice and the artificial knee will wear out, but I finally couldn't stand the pain in my worst knee had both of my knees replaced last year (separately, not together) at age 51.  I am still healing a but from the second replacement in November, so I still occasionally get stiffness and some mild pain in that knee, but I cannot tell you how wonderful it is to be able to walk without pain after SO many years of pain.  I am so glad that I had them done!  I was scared (terrified, actually!) because some people have bad experiences, but I followed all my physical therapy instructions and did my exercises regularly, and haven't had any issues.  They feel different, and the occasional "popping" is weird and a little hard to get used to), but I would encourage you not to suffer just to put it off another couple of years. My quality of life is so much better with the new knees!

Hang in there, my friend!  

Lora

Thank you Lora (and everyone).

Lora, I've thought of you and your previous tomach issue quite a bit in the last couple of weeks especially.  I was on the boards pretty frequently around that time and remember thinking how hard it must have been for you because you couldn't get anyone to do the exploratory surgery.  And then the relief you had after they finally went in and found all of that horrible issue with the mesh. 

Your experience had quite an impact on me back then, and it's kept me going and pushing for surgery or an real answer.  I knew from what you related that I might have to get  quite serious and determined and maybe even a little pushy to get this resolved.  Pain management on an endless basis just isn't a good idea for me.  And my life has shrunk so very much since this all began in earnest back in December, because I never know when the pain will come and when it does, sometimes even large doses of pain med don't touch it.

Hopefully after the second colonoscopy on Wednesday the 22nd next week some kind of progress will be made.  It's so bad that my PCP told the GI doc that if he didn't see anything to call the surgeon directly and stress that it was imperative to get me into surgery immediately.  Having a serious bout of the worst pain while at my PCP's office helped him see how bad it was I think.  I literally was gasping for  breath and couldn't move or talk.  He saw with his own eyes how random and just how debilitating the pain was.

Oh and Lady Tazz - I've started the whole Miralax thing at night myself.  I know that constipation or bowel backup doesn't seem to cause this.  But they told me in the hospital that irregular bowel movements might make things worse so I've followed the practice of many here on OH with the Miralax, just to be on the safe side.

I so appreciate this site and all of you here.  Encouragement and understanding from all of you has helped me so much.  Thank you all.

amy