Anyone with remnant stomach issues?

So sorry to hear you are having the same problems but I can TOTALLY relate to your hopelessness.  I was finally diagnosed with severe gastritis of the remnant stomach probably due to the bile irritation.  Doc does not know why it's happening or really what to do to fix it which sounds the same as yours.  She wants to now try Zantac along with the Prilosec to try to treat the irritation and I probably have to try to get the Cholestryramine down to absorb some of the excess bile.  Makes me so damn nauseous though that I am struggling with taking it versus trying to stay hydrated and out of the hospital.  I have been in 3 times since early September and am not anxious to go back anytime soon.  Every time you are in you see more specialists...everyone has their own take on things and no one can come up with a definitive answer/solution so you feel like you are going to have to live like this and it is very depressing.  I finally took the damn GT out myself  2 days ago because it was so painful and I need to see how I am going to be without it.  I have been out of work for 7 weeks and need to get back to my life.  I have not felt well for almost a year with this issue.  I am anxious to here how Juldon makes out with her JJ revision.  She may be helpful to both of us if it resolves her symptoms.  Meanwhile keep in touch (all 3 of us should) since there does not seem to be much out there about this problem and it clearly is disabling when it presents itself.

I do know what you're feeling and how it seems hopeless.

I don't have much new news to report.  I don't think I'll be able to tell much for a week or two about whether or not this is going to resolve my issues.  My belly is just painful all over right now and I can't pinpoint any specific pain.

I had a period of time that I was draining over 2000 cc of bile per day, I felt like a bile fountain.  I am having some drainage now but I'm not measuring it.  I imagine it is because I am rather swollen inside and out right now.

You are right, stay in touch.  I am sure my Dr. would be willing to talk with yours if necessary.  He has been baffled by me for so long.

Hang in there,

Julie

I was thinking about you and wondering how you were doing?  I assume you are home from the hospital?  I am so hoping that this is an answer for you.  Seems like we have another fellow sufferer above (I am sorry to hear she is having the same difficulty but maybe with enough of us going thru this and keeping in touch we may collectively learn/find a solution).  I didn't do well with my experiment taking out the GT.  Within 3 days all of my symptoms were back and I could not go back to work on Monday as I had hoped.  She now has me back on the Cholestyramine to bind the bile, Reglan TID to move the bile out of the remnant; Flagyl to Rx any possible infection if the bile stagnates in my GI system along the way and allows bacteria to grow plus the Prilosec twice a day.  After 3 days of this I am not nauseous today but still have a lot of belching, and that raw irritated all over belly pain like something is on fire in my gut.  She did not suggest putting the tube back in. thankfully...the only way I would consider that is if I get into an emergent situation again and I am actively bleeding or in so much pain that I need to be hospitalized again.  Then I probably won't have much of a choice.  If I can stay nausea free for a few more days I am going to try to go back to work again.  I just hate to go back and then have the sx flare up and have to be right back out again.  I hope you feel better soon!  Take it easy though...this has been a long haul for you.

I am home, sore, but doing OK.  So far, the drainage is less, and I don't have the pain except for the all over sore belly from surgery.

I think it will just take some time before I can say whether this solved the problem.

I can't believe you removed the tube yourself!!  I couldn't do it, but would be afraid to any way because I have had so much drainage over the months.

I am taking it easy for now.  You should to.  Keep me posted how you're doing.

Julie

Removing the tube was not the brightess decision I have ever made but I suppose overall at least now I know that it is the bile that is causing all of the symptoms since they came right back after it could no longer drain out via the tube.  I also needed to see if I could be without the tube since it is not a long term solution for me anyhow.  She thought the bile would just drain back normally once the tube was out but apparently that is not the case.  So I am back to where I started from before I went into the hospital in September (the pain is not as bad but all of the other sx are raging).  I went to my primary doc on Monday to discuss the whole situation with her as I am feeling like I am getting no where with all of the specialists in the large teaching hospital.  I think you get lost in the shuffle due to the number of patients they see, they all have their own specialty area and if it doesn't fit into some nice little neat package they sort of give up and move on to the next patient.  Meanwhile I am suffering, knowing there is something the matter and relying on them to help resolve it .  I feel like the more I complain that things are not improved that it pushes them away even more because they don't know what to do and just want you to go away and stop bothering them.  Like a hamster in the round wheel, spinning all day but not getting anywhere.  Do you still have your gallbladder and if so did they test that out too during this whole process since it is what stores the bile?  I wonder if it plays some sort of role even though I have no stones.....does it really work properly or is it allowing all the bile to free flow from the liver into the intestine?  I am tired of trying to diagnose myself!    I would love to go back to work if I can get the nausea, belching and flatulence under better control.  Right now the nausea comes without any pattern and I never know when I am going to be hit with a wave of it and need to just go lie down and be still.  The gas is so bad I am constantly belching like a truck driver and passing gas so there really is no other choice but to stay in the privacy of my own home.  There is no holding it in yet there is no relief either.  Evenutally there has to be a better solution because I am self supporting so I have to either work or apply for disability.  I am not sure how I would get approved for disability since it is so embarrasing to explain what the sx are and why you can't work.  Keep in touch and let me know how you are doing!

Please stay diligent with your Dr.'s, I know what you mean about them passing you by and not doing anything to help you.

I am sure my Dr. would talk with your Dr., you might want to suggest that.

I don't have my gallbladder, that came out 6 months after my RNY surgery.

I am still having pain, but I can't tell yet where it is coming from.  Just overall belly pain from surgery yet.  I was at the Dr. yesterday, my liver biopsy was NOT perfect.  Some abnormal cell changes, they think it is due to inflammation from so much bile in my system.

I am not getting much drainage right now at all so I am hoping that the re-do of the JJ site is going to help my problem.

Hope you get something going on soon that will help you.

Julie

I had another severe attack of pain yesterday but now it is all right sided under my rib and behind my breastbone....I would swear I was having a heart attack but know that it is GI related.  I thought I was going to have to go back to the ER but finally the pain subsided after about 4 hours of rolling around on the floor trying to find any position that would relieve it.  I still wonder if there is something related to my gall bladder that is causing all of the bile issues.  I still have mine but ultrasound showed no stones.  I have read here on the board you can have a non functioning GB that can give you as much distress.  I am grasping at straws here to try to find a solution so I can feel better and return to work.  I checked back in with my doc (God I hate to bother her but I am no better and have been out of work 8 weeks now) and she is thinking about either a HIDA scan or MRCP to check the functioning of the gall bladder/pancreas.  Next time I see her in person I will mention I have found a fellow sufferer if she wants to chat with your doc.  It is GREAT news that you don't have a lot of bile drainage....that means it is draining the correct way at least.  I am praying that you feel better each day and have found an answer.

OK, yesterday I had one of those 'attacks'!!  It feels like my remnant is spasming.  I don't have hardly any drainage either.  I can't figure out what is going on.

My DH suggested putting some Carafate into the tube and see if that would calm it down.  I did that for a while any way.  Well, guess what??  It helped considerably.  I plan to put it in there regularly today also.

I have no idea why it is still acting up.........another thing to chalk up to the saga.  I just got up so I don't know yet how I feel today!!

Julie

Your remnant is still probably irritated from the previous bile exposure.  I bet it will take a while before it will be less inflammed.  When they did my scope thru the tube the report said it was active chronic gastritis indicating that the cells had changed because of the ongoing irritation from the bile.  I am having a HIDA scan on Monday to check out gall bladder funtion and to see how the bile is actually flowing from the liver down to the intestine.  I am praying they tell me oh yes it's your gall bladder that is causing all of the trouble since that would be a quick fix.  Still out of work since I had two more acute attacks this week and ongoing nausea which is unpredictable. 

I hope it is your gallbladder, I just wish I still had one to blame this on!!

Does your remnant ever feel like it is 'spasming'?  That is what I describe mine as doing.   It was acting up most of the night last night.   I am so tired of this............

Hope they find something on Monday that explains what's going on.

Julie