Skip to main content

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

Replies sorted oldest to newest

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

I am sorry to hear that. Why did you need an IRA???

I had an ileostomy For colonic inertia and pelvic floor disorder, but countless issues. So much to write in a post and don’t want to bog you. Basically everything that could go wrong, did, and in a year I had two revisions, both emergencies, and spent over 100 days in the hospital—once for three months. TPN, other diagnoses, the works. And more. It’s unbelievable and I have diagnosed health trauma and work with a psychiatrist. I needed another revision and my surgeon and I had a long talk and decided to reverse it instead. Things have taken a turn—it likely would have with the revision so I don’t regret that. I just regret starting any of this in the first place.

@readann posted:

I had an ileostomy For colonic inertia and pelvic floor disorder, but countless issues. So much to write in a post and don’t want to bog you. Basically everything that could go wrong, did, and in a year I had two revisions, both emergencies, and spent over 100 days in the hospital—once for three months. TPN, other diagnoses, the works. And more. It’s unbelievable and I have diagnosed health trauma and work with a psychiatrist. I needed another revision and my surgeon and I had a long talk and decided to reverse it instead. Things have taken a turn—it likely would have with the revision so I don’t regret that. I just regret starting any of this in the first place.

Wow, sorry to hear that. Sometimes we have to try things to see if it works. Everything you have been through made you stronger! 

Maybe a permanent ileostomy will be better. 

Wow, sorry to hear that. Sometimes we have to try things to see if it works. Everything you have been through made you stronger! 

Maybe a permanent ileostomy will be better. 

I can’t imagine it would be given the hell I was in for a year. My surgeon and I agree that is a worse outcome. As I wrote, the issues I had with the ileostomies were abundant and I lived in hell. Plus I have issues such as small bowel dysmotility and gp which Will still be present. I desperately need the right doctor.

@readann posted:

I can’t imagine it would be given the hell I was in for a year. My surgeon and I agree that is a worse outcome. As I wrote, the issues I had with the ileostomies were abundant and I lived in hell. Plus I have issues such as small bowel dysmotility and gp which Will still be present. I desperately need the right doctor.

Dang. I hope you find whatever you need. I am not sure a J-pouch will work. But I hope they find the right option for you. 

Just do not give up!

@BillV posted:

You definitely do not want to give up.  There are two options that do not require an external bag: the K pouch and the BCIR.  Lots of information is available on the internet about these procedures.  Please send me a PM if you would like more information about them.

Thank you. I have thought about them. No doctors do these in my province (or country). I wish my surgeon did. But I am not sure it would even help if I have CIPO and GP.

 

 

@BillV posted:

You definitely do not want to give up.  There are two options that do not require an external bag: the K pouch and the BCIR.  Lots of information is available on the internet about these procedures.  Please send me a PM if you would like more information about them.

Heard of K-pouch, what is a BCIR???

I looked it up, it sounds pretty cool. Science has improved a lot lol. 

Last edited by Lauren Of Emerald City

Lauren, a BCIR functions the same way as a K pouch, but differs in the way it is constructed.  It has a “living collar” placed around the stoma access to the pouch and constructed out of a segment of small intestine (to reduce the chance of valve slippage), and the pouch is shaped differently to reduce the chance of fistulas.  Both procedures have a high success rate and patient satisfaction.  More information can be found on this link: https://www.ileostomy-surgery....ing-as-a-kock-pouch/

 

@BillV posted:

There are two doctors in Canada that do the K pouch procedure.  Their contact information is shown on this link: https://www.qla-ostomy.org/med...-continent-ostomies/.  

I’ve called them both and they are retired from what I was told. 

either way, I think I’d be worried (and a surgeon would be worried) to do yet another surgery on me given the cipo. I wish I knew about the K Pouch in the first place but hindsight. 

@BillV posted:

Lauren, a BCIR functions the same way as a K pouch, but differs in the way it is constructed.  It has a “living collar” placed around the stoma access to the pouch and constructed out of a segment of small intestine (to reduce the chance of valve slippage), and the pouch is shaped differently to reduce the chance of fistulas.  Both procedures have a high success rate and patient satisfaction.  More information can be found on this link: https://www.ileostomy-surgery....ing-as-a-kock-pouch/

 

Thank-you for being so nice and explaining  

@readann posted:

I’ve called them both and they are retired from what I was told. 

either way, I think I’d be worried (and a surgeon would be worried) to do yet another surgery on me given the cipo. I wish I knew about the K Pouch in the first place but hindsight. 

So what is your plan? Is it to try and see more doctors or do you want to just take it day by day???

Praying may help too. 

Last edited by Lauren Of Emerald City
@readann posted:

My plan is eventually to sell my house and try to seek care in the US. It will cost me everything I own. If that doesn’t work, then I suppose death is an option. I don’t want to live like this. 

Do not ever use death as an option. I know how you feel but do not let the universe win. Maybe this is all a test, pass your test honey. 

Is your family supportive??? 

If you do come to the US, I would recommend Dr. Remzi, I believe he is in New York? Maybe visit before you move. 

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×