Few Questions/Help

grandmaof1Member

I know this has been asked before many times but I know I will get help right away instead of looking through pages.

I am having issues with my jpouch. I have pouchitis since I had my take down in March of 2012. The first year truly sucked (I thought for me). Things get better and then bam nothing put pain and issues. Diarrhea, back pain, anus pain, and leg pain. Then it is like I had a blockage and everything comes out. Even though I didn't feel like I had a blockage, but yet the pain of pushing and hardly nothing coming out and being in the bathroom every half hour maybe I did have a blockage. I don't know. I try and watch everything I eat. I can eat the same thing 5 times and the 6th time is a nightmare. I am on a boat load of meds. Trying to figure them out is a job in itself. So what I am wondering is when does the time come to decide to go with an end ileostomy? And is the end easier then the loop? Also, when I had the loop I had nothing but dehydration problems really bad. I ended up in the hospital 4 times and one time my kidneys were shutting down. But I would rather have to have IV fluids every other day to survive then to go thru this darn pain and total EXHAUSTION.

Any advise would be so grateful. I do have an appt in November with my GI dr. I did just have a scope done. I will say one thing, when I found out I had to have colon all removed he said go with the bag and nothing else. I didn't realize there was anything else until I seen my surgeon. She was great and said, neither one is perfect but you have to have one of them. Both of my doctors are awesome.

Please help me. I am so lost. I just keep begging God to send me a message.

Thanks so much. I have been posting so much on here and I want to say "THANK YOU". It seems like when it rains it pours. But I am thankful for all of you. I truly love the support.

11/6/131:37 PM

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Jan DollarModerator, RN, retired

First of all, searching past posts won't tell you when the time is right for you to give up on your pouch, so you were right to make a fresh post. It is an individual decision. The only common thread I've seen is that you should wait for a year minimum, to be sure you've waited out a reasonable period.

To me, this sounds like intermittent partial obstructions. It is typical that diet has little effect in these sorts of instances. I think you've said your recent scope was normal. Correct me if I'm wrong. But, even if you have concurrent pouchitis, you can still have obstructions independent of it.

If you have adhesions causing problems, the intestines can twist and untwist randomly, causing the very symptoms you describe.

Is this a reason to opt for an ileostomy? Maybe, maybe not. If it were me, I'd be thinking more in line of asking for investigation before just scrapping the pouch. What if exploratory surgey revealed adhesions binding up your intestines? Would you prefer release of those adhesions, or just go straight to the ileostomy? It is not uncommon for problems to only be revealed in surgery.

Once you ponder that, if you decide you've had enough, then I think that an end ileostomy is the better choice. If you opt to have the pouch removed, it is a huge surgery, so not to be taken lightly. Some are able to function well with a disconnected pouch. Others not so much.

So, my first steps would be to have CT or MRI to see if there is anything obvious causing obstructions. If the symptoms persist, I'd go back to my surgeon and ask for exploratory surgery looking for adhesions, with an option for ileostomy as a second choice (if you're ready for it). You can also say no ileostomy until later. Perhaps there is something unforseen in there, like an undetected leak, sinus or abscess.

Jan

11/6/132:52 PM

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grandmaof1Member

Thank you so much Jan. You are truly amazing. I never thought of some of those things.

I have an appt with GI in November. And I made an appt with Surgeon for January 2. Maybe I can get in sooner.

Thanks again,

11/6/133:09 PM

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