Anyone with remnant stomach issues?
That is the tough part about this...the waiting and not knowing what if anything will be done to fix us. I am grateful I was able to lose weight and be thin for the first time since I was a teenager but I am not so sure if I knew this would go along with it that I would have made the same decision. I am a planner and a doer so to sit around and wait is not in my basic makeup. The days seem endless without anything to occupy my time except this damn situation. I have 10 more days till the scope and am hoping she finds a solution when she goes in then.
Hi,
Just an update for you on me. I saw my Dr. yesterday. He called me today and I am having a scope done on Monday of my remnant stomach through the tube site again. If he doesn't see anything significant, I will then have surgery on Tuesday for a revision of the jejunostomy site. Not sure I spelled that right. He still feels that I am kinking off there at times causing the back up of the bile and food stuff into the remnant.
He did tell me that if he sees anything with the scope and does any biopsies, he won't do the surgery on Tuesday until he gets the pathology reports back. I have alot of stringy blood and clots sometimes that drain out in the bile from there.
Sure hope this is the fix for me.
How are you doing now? Do you still have the g-tube in?
Julie
Just an update for you on me. I saw my Dr. yesterday. He called me today and I am having a scope done on Monday of my remnant stomach through the tube site again. If he doesn't see anything significant, I will then have surgery on Tuesday for a revision of the jejunostomy site. Not sure I spelled that right. He still feels that I am kinking off there at times causing the back up of the bile and food stuff into the remnant.
He did tell me that if he sees anything with the scope and does any biopsies, he won't do the surgery on Tuesday until he gets the pathology reports back. I have alot of stringy blood and clots sometimes that drain out in the bile from there.
Sure hope this is the fix for me.
How are you doing now? Do you still have the g-tube in?
Julie
I had my scope Thursday...showed gastritis; evidence of bleeding and polpys. She biopsied the polpys and I should get results mid week. She wanted to leave the tube in just in case she needs to go back in and do something with the polpys. I have the same thing as you...bright red bleeding from the tube at times and then for several days black flecks of old blood mixed with the bile. How much does yours drain per day? I am about 100 cc which she says is okay and would drain on it's own if I didn't have the tube. How did your doc determine there was a problem with the JJ site? When I had the scope she only went as far as the first part of the duodenum....did not get as far as the part where it connects further down to the intestine. Since I had the scope I have had tremendous back pain on the left side flank area...I had to go back to taking the heavy duty pain med since I can't move without aggravating the pain. Not sure if it has to do with the air they inject when they do the scope? I thought oh **** don't tell me I have more problems now....I really will be labeled the hypochondriac. It is a bit better today so I am going to just chalk it up to the test and hope it resolves in a day or two. Are you taking any other meds for the problem? She wanted me to take Cholestryamine to bind the bile and Reglan to improve motility but they both made me so nauseous I decided it was more important to try to drink/eat to stay out of the hospital. Still out of work at this point....don't want to go bac****il the tube is out or this situation is somewhat under control since they are fed up with me being in/out. She also injected an antibiotic directly into the remnant after the scope to treat what was cultured out of there since she thought that might be contributing to the gastritis. I will be anxious to hear what yours shows on Monday. Good luck!
It all sounds so familiar. I have had several scopes through there and same thing. Gastritis and lots of irritation, red and angry looking.
I get around 100-200 cc of drainage at a time when I drain the tube. When this all first started and I was wearing a leg drainage bag, it was nothing to have 1500-2000 cc per day. It was very green at that time, it is now clear yellow to creamy yellow, to an almost brown tan color sometimes.
I have been on Reglan, gives me diarrhea. Cholestryamine constipated me terribly. Just taking pain meds right now. I was taking carafate orally and injected it in the tube for a while also.
I have been to a U of M Dr., he and my own Dr. concur that this is a problem with the JJ site. Just by process of elimination with the multiple GI tests I have had. None are conclusive though. I just am willing to do almost anything to end this.
Don't push getting the tube out too quickly because they might just have to put it back.
I have been working with mine, it is painful but I am quite used to it now. People go around with them for years as a feeding tube so I try not to complain too much.
Will keep you posted.
Julie
I get around 100-200 cc of drainage at a time when I drain the tube. When this all first started and I was wearing a leg drainage bag, it was nothing to have 1500-2000 cc per day. It was very green at that time, it is now clear yellow to creamy yellow, to an almost brown tan color sometimes.
I have been on Reglan, gives me diarrhea. Cholestryamine constipated me terribly. Just taking pain meds right now. I was taking carafate orally and injected it in the tube for a while also.
I have been to a U of M Dr., he and my own Dr. concur that this is a problem with the JJ site. Just by process of elimination with the multiple GI tests I have had. None are conclusive though. I just am willing to do almost anything to end this.
Don't push getting the tube out too quickly because they might just have to put it back.
I have been working with mine, it is painful but I am quite used to it now. People go around with them for years as a feeding tube so I try not to complain too much.
Will keep you posted.
Julie
Well, I had my surgery yesterday, I am still in the hospital. He ended up doing a liver biopsy as well because my liver enzymes were extremely elevated as well. It turns out that my jejunum was full of bile and there was evidence that it was kinking up. My Dr. thinks that this may be the problem. I am not so sure yet, won't be able to tell until some of this soreness subsides. There has been alot of bile drainage coming out of the tube today also.
I am hoping that this is it, but I have been getting so down about it that it is really bringing me down. I am quite depressed and actually broke down a couple of times today about it. People just don't understand that this has been very stressful for me, taking pain meds every day, the tube placement, and not feeling well every day.
I hope I get some sleep tonight, didn't get any last night at all. I am going to see if I can get some more pain meds now.
Will let you know how things go.
Julie
Glad to hear you made it thru okay and he thinks he found what the problem is. Sorry to hear about the pain though....you may need more than they typically give since you have been on meds for a while and your body naturally will build up a tolerance. I really hope this is your answer. You have been struggling with this a lot longer than I have but I can relate to the feelings of hopelessness and depression. I have been chronically not feeling well for about 9 months now with the most acute episode lasting the last 6 weeks and not being able to work during that time. It is frustrating to "know" that something is wrong but to have to wait an interminalbe amount of time to either get an answer or have some resolution. I am waiting on biopsy results and then am hoping the tube can come out. This week just to add a little fun to the mix I had a kidney stone/UTI probably from not drinking enough and the inactivity in general. Hope you are feeling better soon!
AZ,
I have just read all of your and Juldon's posts and this sounds alot like what I have going on as well. I just had a G-Tube placed (just under my rib which hurts with each breath, burp, laugh, etc.) placed with my most recent exploratory laparoscopy Sept. 5 where they found an internal hernia, placed the g-tube and found atrophic gastritis of the remnant stomach. I am in the hospital now again due to increased pain and nausea with dry heaves (my 4th admission since July). I also had a biliary bypass due to a stricture of my common bile duct and now they are thinking that I may have sphincter of oddi dysfunction. Back to the remnant stomach though, I am draining 300-500 cc's of bile, some days with coffee ground looking old blood and sometimes with red streaks of blood noted and the docs are talking about having to do a subtotal gastrectomy because the stomach just appears to be non-functioning. Have any of your docs mentioned this? Please feel free to contact me anytime it is nice to know there is someone out there who understands what you are going through. Is scarey when the docs you trust have to tell you, I am just really not sure what to do here...leaves ya feeling pretty hopeless and bewildered about what is going to happen next. you can call me at 4073236641 or email me.
Malissa
I have just read all of your and Juldon's posts and this sounds alot like what I have going on as well. I just had a G-Tube placed (just under my rib which hurts with each breath, burp, laugh, etc.) placed with my most recent exploratory laparoscopy Sept. 5 where they found an internal hernia, placed the g-tube and found atrophic gastritis of the remnant stomach. I am in the hospital now again due to increased pain and nausea with dry heaves (my 4th admission since July). I also had a biliary bypass due to a stricture of my common bile duct and now they are thinking that I may have sphincter of oddi dysfunction. Back to the remnant stomach though, I am draining 300-500 cc's of bile, some days with coffee ground looking old blood and sometimes with red streaks of blood noted and the docs are talking about having to do a subtotal gastrectomy because the stomach just appears to be non-functioning. Have any of your docs mentioned this? Please feel free to contact me anytime it is nice to know there is someone out there who understands what you are going through. Is scarey when the docs you trust have to tell you, I am just really not sure what to do here...leaves ya feeling pretty hopeless and bewildered about what is going to happen next. you can call me at 4073236641 or email me.
Malissa
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