Newbie looking for anyone with ileorectal anastomosis?

Hi! I realize this is a J pouch group; however I can't find anyone with an ileorectal connection as I had my loop ileostomy takedown, colon removed then connected to rectum at Cleveland Clinic on 12/12/16. The doctor decided after defecography that attaching my small intestine to rectum would be viable. I need help because my rectum turns the contents into burning "mucus poo" I have to push out. Sometimes after certain foods I can get liquid or both. I have to use a catheter meant for cleaning out an ostomy and "flush" out nightly to keep the rectum from getting distended. The closest thing or people I can find to what I have are j pouchers. I have you tubed butt burn and am trying to cope. Please if anyone has an ileorectal anastomosis please help with questions. I have quite a few. Currently at Cleveland Clinic for post op as I live close to Cincinnati. The surgeon and WOCN nurse don't have any suggestions as this isn't a common procedure from what I understand. Help, please.��

Original Post

I have had anal anastimosis.. first surg 95 w total colectomy w R ileostomy. Few years later built Jpouch..nother few years.. reconnect all the plumbing to the sphincter. .where your fresh at 2016..yeah learnin how to push takes some time. Some of that is learnin to trust your sphincter lol. The burn is acid for sure..destin works great..drinkin plenty of water to dilute the acids helps.. what what you eat chemical wise it will have a not so pleasant side effect.. as for using a cath.. I can not say I used one.. sometimes usin an index finger ..get familiar w your new rectum lol..sometime there is a dip or pouch (very small) to ine side or anither and things can get stuck there. Might have to "scoop the poop".  I am more than happy to help w any info and or experience with this as I can. I had my anal anastimosis in houston at the colon n rectal clinic.. Dr. Baily n Dr. Butts (not kidding) did mine they are the ones that developed the surg.

Thank you for responding! I'm still getting familiar with terminology. Do you still have your rectum? They took out my colon, left rectum; hence ileorectal anastomosis. Now  when I go to sleep my output gets so thick almost dehydrated I literally can't push it out in the morning. I go pretty well all day from thick to thin. Any suggestions on how to go in the morning? Does this happen to you? Thank you~Jen

jen, I answered ya in a PM (private message). I will say ....not almost dehydrated, We are dehydrated just from having no large intestine. our biggest task is keeping hydrated and electrolytes balanced... the large intestine does so much (other than make us miserable lol).  I'd start with increasing your water intakes and do so through out the day.

Very few members here have an ileorectal anastomosis. The vast majority have an ileoanal. That said, the ileal j-pouch performs similarly to a rectum. With a rectum, you should have less problems emptying, not more, since the rectum has muscles that the ileum doesn't.

Anyway, some of us do have emtying problems and nightly enemas or drainage by tube can work.

As mentioned before, stepping up your fliuds may help. Fiber supplements may also help you empty by adding more bulk to your stools.

Jan

Ive had an IRA for 23 years. Your quite right to compare some of your experiences to j pouch patients. You will get butt burn with an ira at times especially first few months until things heal up and even then you get some stingers. Getting your fluid intake correct is vital now you've lost the large bowel. I have been instructed to drink 2.5 litres a day, more in hot weather. Going to the loo has never been quick for me, I just have to patiently let things pass without forcing too much. I take 6 imodium a day which does help keep my frequency down to 5 bowel movements a day, without it I'm well into 14 bowel movements a day. I vary between sloppy to semi firm most of the time but every now and then I get watery diarrhea that I've never been able to explain. Caffeine and alcohol are best avoided i have found and too much sugar. Raw vegetables have never agreed with me since surgery. I'm due to have a J pouch soon but has been delayed due to other health problems to cut my risk of rectal cancer. Hope things are going OK for you by now.

How will they take your IRA to a j pouch? Do you have to have a temp ileostomy first? Even drinking a lot of fluid I am “constipated.” Unfortunately like you raw veggies don’t agree. They did just dialate the anastomosis where connected to rectum. Apparently since Dec I formed scar tissue and the GI doc couldn’t get a 10mm scope in. He tried to take the area to 15mm but I popped the balloon at the end of the scope at 12. He didn’t finish. I guess he took his toy balloon and went home. Sorry sometimes we have to laugh at the absurdity of all of this. I have been told to stay clear of Imodium as I need to thin things not thicken. How are they going to do your surgery and what prompted them to change your IRA to a J pouch? If you don’t mind sharing. I’m sorry you are having to deal with so much. Thank you for responding. Jen 

It will be a two stage j pouch, first the dreaded bag and then plumbed back up to get the pouch working. I'm growing far too many polyps to safely keep removing, have had 200 removed over last 2 years after a rather sudden increase in the amount I grow and no signs of slowing back down, one of the mysteries of FAP. Do you get dehydration symptoms. Something that has helped me a lot is drinking a rehydration fluid developed by St Marks hospital in UK, think they called it electrolyte Mix. It's not the nicest thing in the world but cheap to make out of dextrose, salt and sodium citrate plus juice of your choice. Helps your kidneys extract as much fluid as possible despite missing the large intestines. Was also told to drink 2.5 litres a day 1.5 of which is the electrolyte Mix. Ready made dehydration sachets work too but not as effective so I'm told and cost a lot over time. It has made my bowel movements far easier and predictable, no constipated moments. I take two imodium before meals to slow the food down to give the small bowel as much time to get the nutrients. All advice from my lower bowel specialist.

I’m sorry about your FAP. Having had a temp ileostomy I promise it gets easier as you learn more. Getting set up with the best appliance and bag that works for you is important. You just gave me something to think about because my nutrients like vitamin A and essential fatty acids have been low. I have been having pain in one specific area so have been pushing food through with juices. Trying to get surgeon and GI doc to look and find a cause so I can enjoy food. Will up electrolytes in between. Wish we had what you use in the States. Thank you and if I can help in any way please let me know. Thank you~Jen

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