Anyone with remnant stomach issues?

Would love to hear from others that have had issues with their old stomach.  I just got home after 3 weeks of being in/out of hospital with severe left upper quadrant pain boring straight thru to my back.  Nausea, bloating, belching, flatulence.  Pain every time I tried to eat or drink.  Had CT, upper/lower endoscopy; barium swallow and barium meal.  All negative except it showed hiatal hernia returned and roux limb slow to empty.  Doc did expl lap finally last Mon which showed my remnant stomach filled with fluid/bile/etc.  Ended up with a GT to drainage (very painful but cleared up all of the other sx).  Wondering if others out there are suffering too?  She said she has not seen it before and not much in the literature about the cause/rx.  I can't imagine living long term with the GT in. 

Sorry to hear you are going through this. I am of no help. I thought your avitar was cute. Best wishes to you for a speedy recovery.

I have been going through the same thing since last fall.  Lots of belly pain, more upper centrally located.

I have had a g-tube in since March for drainage of bile/fluid from my remnant.  I have had test upon test.  Been to U of M in Ann Arbor for a second opinion.  It is agreed with my surgeon that I need a new outlet to drain the remnant stomach.

My surgeon went in to do that in July, but found more serious issues that needed fixed.  I had had a perforated ulcer at some point which caused my pouch and remnant to fuse back together.  That all had to be taken apart with removal of some part of my pouch.  It was like being a newbie all over again.

I see the Dr. tomorrow to find out when my next surgery is.  I had to wait at least 8-10 weeks for healing.

This has been a miserable complication, lots of pain and misery.  I have been on some narcotics every day.  The drainage also varies from day to day.  The tube is very uncomfortable to say the least.

This is a rare thing to have happen, and my Dr.'s can't explain why.  I just know I hope it ends soon.

Maybe your Dr. could contact my Dr. to chat about it??  I am sure mine would be open to that.  You can look up Dr. Gluck's info. on this site.  Just click on his name under my avatar.

I got your e-mail and just haven't had time to reply.  Sorry.  Please ask any more specific questions if you want, I will help if I can.

Julie

God Bless you for tolerating the tube since March!  I can't bear it and am thinking I want it out before the two weeks come till she can scope the remnant stomach.  It is very painful and I smell bad all of the time due to the bile secretions.  I am not able to work because of it.  My doc too doesn't know why it is happening and has never seen it before and not much in the literatute about it.  What were your symptoms?  Mine started as intermittent cholicky kind of pain that would double me over and would last 1-2 hours; subside then symptom free.  In between I would be bloated like I was 9 months pregnant, tremendous gas, belching, flatulence and feeling like something was trapped in my left upper quadrant.  Doc thought at first another internal hernia but all tests negative for that.  She then treated me with antibiotics for small bowel bacterial overgrowth and that worked for a while but then stopped in August.  Within the last month the pain became constant mid epigastric area radiating straight thru to my back and I was not able to eat or drink without causing pain to flare.  Ended up in hospital on IV's; had CT, uppper/lower endoscopy, Barium swallow but all negative.  They sent me home and I was back in ER in 3 days same thing.  Home again but pain persisted so she finally did exp lap and found the remnant full of fluid/bile and I ended up with the GT that time.  She wants the tract to heal and in 2 weeks will scope to see if I have an ulcer in remnant or anything else.  I don't see her for another two weeks but will mention that you have had similar issues if she wants to talk with your MD.  When you see yours for follow up feel free to mention me as a fellow sufferer.   Let's keep in tou*****ase a solution is determined.  I am also getting rather discouraged and worried about long term implications for work, supporting myself, etc which doesn't help.

My symtoms are relatively the same as yours.  Reading your post is like reading about me!!

When you were treated for bacterial overgrowth, was it C-difficile?  I have also been through two courses of antibiotics for treatment of C-diff.

I have been scoped several times in my pouch and through the tube site into the remnant stomach.  I have had a couple of ulcers in the pouch in the past.  The last time my remnant was scoped, the Dr. reported that it was VERY red and inflamed, not sure why.

I too have had many tests and ER visits for this.  Most people have a hard time understanding what it is all about.. 

My Dr. doesn't know why any of this is going on either, except that he feels the 'Y' connection is blocking up and that's where he wants to put in another way for the remant to drain.

I will let you know tomorrow what I find out. 

Please stay in touch with me as I feel we are going through the exact same thing.

Julie

I was treated for SIBO several times; no cultures ever taken.  One week of antibiotics and I was good for 6 weeks then symptoms returned.  Another course, good for 6 weeks.  Then no matter what they tried I could not be off the antibiotics for more than 4-5 days and the symptoms returned.  I worried about long term antibiotic use and sure enough developed thrush in my mouth and hairy black tongue from the Flagyl.   Doc still thinks the gas/bloating/flatulence is related to the SIBO and now questions if the remnant never really clears of the bad bacteria and causes the problem to return or if the remnant issues are a seperate entity. She did take cultures from the remnant while I was hospitalized and learned it is growing different stuff than my colon but is consulting with infectious disease to decide if she wants to use antibiotics orally or thru the tube.  I did find a way to make my GT a little more comfortable.  Took the drain bag off and now just aspirate the fluid off every 6 hours with the syringe that you flush the tube with to keep it patent.  Takes the strain off constant dragging/pulling the tube.  My tube is in an awful place, right under my breast between my ribs so every time I move or take a deep breath I get this shooting pain thru the area.  What other meds have they tried for you?  They want me to take Cholestryamine to bind the bile and Reglan to see if it will help the remnant empty.  The Cholestryramine isn't so bad but the Reglan made me nauseaous the last time I took it.  Course it was right at the start of this ordeal that began in early September so I can't be sure it was the Reglan.  I am reluctant to restart it just now when I am finally able to eat and drink again.  Also she has me on a celiac diet (gluten free) in case I am allergic to wheat.  I agree we should definitely keep in touch if only to support one another emotionally.  I am pretty low right now.  I am type A personality and workaholic so this has really done a number on my psyche since I don't know long term if I will be able to return to work.  Staying at home doing nothing has set me up to think of nothing else but this issue and I need to find a way to redirect my energices and remain positive.

Hi Julie...just checking in to see how you made out at the doctors' this week.  Any plan to improve your situation?  I am still in a holding pattern till she scopes the tube in 2 weeks.  I hope she has some answers for me then because the tube is coming out right after that procedure regardless.  I can't stand to have it in longer than that.  I would have taken it out already but she educated me that I must wait for the tract to heal because if I take it out before then all of the bile will drain into my abdomen and cause peritonitis.  Hope you had a positive visit with the doc.  I know you have been suffering longer than I have with this issue. 

Wow, this does not sound good! I hope it's not what's wrong with me! I had a G tube in from May until about 3-4 weeks ago. After they removed it, I started having pain in my belly. It was pretty constant, but now it comes and goes. I'm not really bloated though. I've had an upper GI and another one with small bowel follow through. They were both normal except that I had reflux (which isn't normal). So, who knows what is going on!!
   It seems crazy that after all those tests, especially the CT scan, they couldn't see what was happening in your stomach! Living with a G tube is no fun, but you do get used to it. I'm sure that having it hooked to drain all the time really sucks. I'm sorry you have to go through it. Also having to worry about your job and supporting yourself sucks, I know. I had to quit my job. Personally I just try to stay positive and hope for the best. Good luck!!

Thanks for the support!  I know there are people in a lot worse situations than me after reading the posts on the complication board but it is hard to not feel sorry for yourself when you are in the midst of this and waiting for answers.  It becomes a downward spiral that I am not willing to go on!!!  I am making a committment today to focus on what is right rather than wrong and be grateful that I am in the care of a fabulous surgeon who will work to try to find a solution.  Good luck with finding the cause for your pain too.  I did learn through this whole process that pain is not a normal thing after GBS and that even though the tests were all negative it was important to continue to look for a cause.  If she didn't do the exp lap I would still not know what was causing the pain.  Sorry to hear about your job.  That is a worry of mine....exploring long term disablity in case I need to go that route.  Take care and keep in touch.

Just thought I would update you to let you know my appointment on Wed. was cancelled.  My Dr. had emergency surgery.  It is not scheduled again for 2 more weeks.  Hurry up and wait.....

Julie