Stricture??? Blockage???? long and lots of ????'s

I have a story about me and a bunch of questions for you if you think you might know or have guesses. I don't often come on here anymore but was procrastinating this morning so thought I would take a look. I have been having some pretty major issuesd would love hearing any input, as well as any contributions, about what is up with me, or what could be up with me. 

I had RNY 1-28-2004. Everything proceeded normally through the years. I did get too skinny because of exercising too much and not eating enough in 2006, but got chastised by the surgeon and upped my weight. He wanted a 25 lb gain, so I gave him a 50 lb. gain . I stayed at that weight until the end of 2009, going up a few and then going down a few.

I took a job at WalMart (truly HellMart to work there!) and I started having tummy troubles, nervous stomach, constipation, then diarrhea, sometimes vomiting. I thought it was just because of the job and how much I hated it but needed it at the same time. Gradually it became hard to eat, nothing would seem to go down smoothly and stay. Tried to go to the doc but had no insurance any longer and only had state medicaid, whi*****alifornia sucks due to the bazillion budget cuts. They referred me to a gastro doc, took six months to get in. He ordered an upper GI. It came out that the crud I drank for the test would travel down my esophagus to a certain point and then would turn right around and travel back up and make me vomit it out.

Since it was not a dire emergency and I wasn't going to die immediately from it, they rescheduled a follow up for six months and said that was all they could do. So I started my wait for the six months. In the meantime, I was able to keep down less and less, whether it be liquid or solids. The only thing that I seemed to be able to tolerate at all and would stay down for an hour or so was chocolate milk (only certain brands though) and string cheese.

At this point, I started positively thinking that, after all these years, I had gotten a stricture. I called my pcp doc, my gynecologist, my therapist, my gastro and tried to tell them what I felt I had and it would be a easy fix. Nope, nothing anyone could do but the gastro would investigate at my follow up appt in six months. I decided to go to the ER but some nurse talked me out of it because she said no one would help me because I had been living with it so it wasn't an emergency. I would be wasting their time and taking away from someone who had a REAL emergency. So I didn't go there.

It seemed like daily I was able to ingest less and less until I realized that I was taking in nothing! All of this time, I forgot to tell you that I started working at walmart (when this all kind of started) and I was a good solid 170-175 lbs and wore XL tops and size 14 pants, none too loose. Current weight is 130 lbs, size 4 and small tops. I have lost ~40 lbs in probably seven months because of this "problem."

I got married Feb 18, 2012 and became eligible to insurance again March 1. I called the gastro and they were now more than happy to see me since I not only had insurance again, I had damn good insurance. They scheduled me for an upper gi with some sort of follow thru. When I went for it, the radiologist *****ad the test happened to be an acquaintance of mine (boys played baseball together). He did not like what he saw at all. They had me there for five hours to see if the drink would move past a certain spot. After five hours and NOTHING going through and me upchucking the yuck you drink, he said I needed to be admitted to the hospital because at the least I had to be really really dehydrated.

Off I go to the ER. As typical, my gastro was on vacation and the on call doc didn't want to deal with me unless I was dying because he was really busy. I asked the ER doc if he could possible call my RNY surgeon and talk to him because I KNEW I had a stricture. He did call him and Dr. Nazarian made arrangements for me to be admitted to the hospital down in Los Angeles (four hours from home). Drove down there, got settled in the hospital, they took me in, knocked me out and did their thing. It was a stricture and I was EXTREMELY tightly closed off. They did a second stretching two days later and I came home.

Sounds like a happy ending, but guess what? I still cannot eat or drink without it coming back up. I called the gastro and he said since I had Dr. Nazarian do it, he wants Dr. Nazarian to look at it. I could drive to Los Angeles but I don't want to and shouldn't have to in my opinion. So I have an appt the 23rd with my gastro here and hopefully he will be able to scope me again or do whatever to get better.

O.k. After writing this big long book, do you have any similar experiences or know anyone that does or know anyone that I might talk to that is an expert, like Andrea being an expert on vitamins?

Gee, I had no idea this was going to be this long when I started it. Thanks for reading and for any guidance at all you can give me. I think since I have written this, I am going to go ahead and post it on the main board to see if anyone reading had any advice.

I am very glad that you are feeling better and hope that your doctor is on track.

Thanks for listening,
Jillie

Jillie, Jillie,

I'm sorry to hear about all that you have gone thru...It must have been frustrating beyond belief to be so sure of what is happening and not getting any professional to hear you out and help to fix it because "you're living with it" so it cannot be that serious, blah,blah...

Honestly to me it sounds like it still is a stricture...I know several people from your support group days who had to be re-stretched 5 or 6 times and some who got ulcers around the inside of their stoma opening that cause problems too...

Hope you feel better soon...

Thank you so much for your kind thoughts, Alesia!  At least I know it can close over and over, even at this far out! 

Jillie

I am sorry to hear you are going through so much. I am only 9 weeks post op but i have had to have my stricture dilated 5 times. It sounds to me like you are going to need at least a couple more dilations if you were closed that tight. I was closed all the way as well and it kept closing a couple days after each dilation. They finally injected steroids into the scar tissue and now it seems to be staying open.
Good luck to you. i hope they get you well soon!

Great!  Five times???  I am glad for you that it is staying open now!  Thanks for your response!

Jillie

I I am sorry you're going through this!!!  I am beginning my 6 month pre-qual and wondered, is this normal, to be so far out and have scar tissue still developing there?

My surgeon had someone come in with a stricture and she was as far out as you are.  They can happen at any time from what I gather.  I don't know how many times she had to be dilated but it's not unusual to have to do it a few times.  Glad someone finally listened to you!  Best of luck with getting back to normal! 

I'm both sorry to hear about what you've gone through and glad to hear about it.  I'm beginning to wonder if this is what I've got.  I can't keep anything harder than jello, pudding, or soft cheeses down.  I've attempted different types of meat only to have it come back, my protein drinks are causing me nausea, I'm constipated, and I hurt ALL THE TIME!! Like you, I currently have no insurance so I'm left with "living with it" or attempting a ER visit in the middle of the night (when I assume they need someone to practice on.)  I don't get my Medicare until August and I'm afraid I can't make it that far. I started out my journey at 290# and I'm now down to a gaunt 108. I took my husband to the doctor last week and he said I've lost TOO much weight.  I, being a smartazz asked well how do you propose I gain some back when I can't eat??  He said, "eat!"  Well, duh!!  I just can't keep any food down.  So, now what?

Well, I would just go to the ER and have them do what is necessary.  Honestly, that is the only place where they actually have done something for me, if only to rehydrate me.  At least when they do that, I do feel better for a few days to a few weeks.  About the constipation, I don't want to freak you out because these are my thoughts only, but when I was getting some sort of test I was listening to the doctors talk and they were concerned that my bowels were not making noises and that was not good because that also meant nothing was going through and this could possibly compromise them.  So I have taken it upon myself to take a stool softener every five days for two days in a row.  That at least gets my bowels moving because I can hear them and feel them.  It also does help you go, but it is not a lot, but I figure it keeps them working.  This might be something you want to check into.

Good luck to you and I would love to keep in touch with you to see what ends up working with you.  My email is [email protected]

I had a DS and had a stricture, which had to be dilated twice before I could eat anything.  My sleeve actually folded over on itself and looked like a bracket.  

 It is just ridiculous what you have gone through.  Shameful even on the part of the medical system even.  It just may take several dilatations to fix you up so you can eat.  I do hope you get well soon.