Ileostomy reversal soon - what should I be expecting?

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Hello everyone :) I recently (Aug 21st) had a total proctocolectomy. I was diagnosed with UC almost 20 years ago. The past year or two it was so bad that I actually wanted my colon removed. My last colonoscopy showed dysplasia, and with my history, is was a slam dunk. I had NO idea what that surgery was like that. It was brutal. Now I'm getting ready to have the reversal surgery in early November and my J-pouch dropped. What should I expect??? I want to be prepared. Thank you!! I can't tell you how helpful it has been to read through these posts and see everyone talking so openly about all of this.

Jen
 
I saw my surgeon on Tues and he advised they found dysplasia.
I'm kinda freaking out about it. Should I be worried?
Does anybody know what the time lines are for dysplasia becoming cancer?
My response has been to increase my work load, so I can earn more money so I can travel more now whilst I am capable of doing so.
Any ideas how I can prevent dysplasia from graduating to bowel cancer?
 
You will be able to travel after you recover from surgery. As my surgeon put it, they can't possibly biopsy every single area on your colon. So if dysplasia is found in one spot, there could potentially already be worse areas (i.e. cancer) in other spots. so once dysplasia is found anywhere, it's best to have the entire colon removed. again, just what my surgeon told me. you should have the discussion with your surgeon. because once it becomes cancer, it's a whole different ball game (chemo, oncologists, etc.) I wish you well. The surgery is definitely difficult, but well worth it in the long run. Hang in there.
 
I don't want my colon removed.
I've just got rid of that damn bag - I don't want it back and I definitely do not want it back on a permanent basis.
 
=( I'm sorry you are going through this. The bag will likely only be temporary though. They can build you a J pouch using part of the small intestine. That's what I am having done. I had the entire colon removed and have had a bag for about 6 weeks now. Early November I will have the bag removed and the J Pouch "dropped." It is already constructed and healing inside my body. The temporary bag is to give the pouch time to heal. Talk to your surgeon about your options. I know getting the bag back for awhile seems horrible. Trust me, I understand.
 
Rozojl, a J-pouch is not an option for Samboi since she has Crohn's disease. People with ulcerative colitis can have a J-pouch, but it is not recommended in those with Crohn's disease since the small intestine is likely to continue with the disease even after the colon is gone.
 
rozojl said:
Early November I will have the bag removed and the J Pouch "dropped." It is already constructed and healing inside my body.
Click to expand...

Explain what you mean by "dropped." I have a J-pouch constructed, but have chosen not to have it connected and functioning, as I quite like having an ileostomy.
 
Oh, I didn't realize that with Crohn's a J-pouch wasn't an option. Having the pouch "dropped" just means when they go back in and reverse the ileostomy, so the J-pouch is functioning. How long have you had your ileostomy? Do you have skin irritation? My skin has been infected since my surgery (about 6 weeks), so I'm not a big fan of my bag. It IS much better than how I was living with the constant UC flare ups though, that's for sure. I'm getting used to it now, but bc of the infections and infalmmation, i have constant pain. So I'm looking forward to the reversal.
 
Oh, okay. I've never heard it referred to as being "dropped," only as reversal, takedown or reanastomosis. I've had my ileo since Jan. 2012 and haven't had any major issues with it at all, only minor complaints that were easily handled as each one came up.

I wish you the best with your reversal. If I was in pain, I would want it gone too! There aren't very many people on this board who have/had functioning J-pouches. There is another forum you might check out that is just for people with a J-pouch. You might check them out:
http://j-pouch.org/eve

Here are a few threads of people here with J-pouches. You might find something of use in these:
http://www.crohnsforum.com/showthread.php?t=43094
http://www.crohnsforum.com/showthread.php?t=42719
http://www.crohnsforum.com/showthread.php?t=52786
http://www.crohnsforum.com/showthread.php?t=30738

You might also post your questions in the Ulcerative Colitis forum:
http://www.crohnsforum.com/forumdisplay.php?f=69
 
Samboi said:
I saw my surgeon on Tues and he advised they found dysplasia.
I'm kinda freaking out about it. Should I be worried?
Does anybody know what the time lines are for dysplasia becoming cancer?
My response has been to increase my work load, so I can earn more money so I can travel more now whilst I am capable of doing so.
Any ideas how I can prevent dysplasia from graduating to bowel cancer?
Click to expand...

Samboi, unfortunately, the best and most recommended way to treat bowel dysplasia is to surgically remove the area of dysplasia. If it is widespread, then total colectomy. Dukeis had proctocolectomy earlier this year due to dysplasia. There are other forms of treatment, but with underlying Crohn's, I suspect this is what your GI will recommend.
 
Thanks Toothy.
I think I'm just a bit in shock about it.
I've gone from having very mild disease for 20 years to having very severe disease with not very positive outcomes.
I'm seeing my GI on Mon to discuss further.
I'm ok with having parts of the colon removed - I just don't want to lose the lot and go back to the bag. At least not at the moment.
I want to have some bag free time.
And I'm going to ask to be put back on mesasal as apparently this slows the progression from low to high grade.
 
2thFairy said:
Oh, okay. I've never heard it referred to as being "dropped," only as reversal, takedown or reanastomosis. I've had my ileo since Jan. 2012 and haven't had any major issues with it at all, only minor complaints that were easily handled as each one came up.

I wish you the best with your reversal. If I was in pain, I would want it gone too! There aren't very many people on this board who have/had functioning J-pouches. There is another forum you might check out that is just for people with a J-pouch. You might check them out:
http://j-pouch.org/eve

Here are a few threads of people here with J-pouches. You might find something of use in these:
http://www.crohnsforum.com/showthread.php?t=43094
http://www.crohnsforum.com/showthread.php?t=42719
http://www.crohnsforum.com/showthread.php?t=52786
http://www.crohnsforum.com/showthread.php?t=30738

You might also post your questions in the Ulcerative Colitis forum:
http://www.crohnsforum.com/forumdisplay.php?f=69
Click to expand...

MANY THANKS!!! And I wish you all well =)
 
hi, i had a temp bag for 6 months, surgeons removed the whole colon except for 10cm at the rectum. they connected my small intestins to that. I never had a "J" pouch or nothing else,it has been 14 years with no issues; so it can be done.
I still have crohns but im doing good; i do go to the bathroom lots, i have no storage hihi, but i'm grateful.i have been diagnosed with crohns/colitis back 36 years ago.
i guess you could call me "pro".
Good luck and if i can help in anyway,
 
How many times do you have to go to the bathroom? and is having liquid stool hurt the rear end after awhile or do you have any tips on that? did you have to change your diet at all?
 
I saw the GI yesterday. She has said it's too early to tell and we are leaving it for a few months to settle. After it has settled - we will do a scope and see what happens - but it will be early next year.
My current instructions are to eat less fibre, more low res.
I'm actually now ok with the possibility of losing the colon. I'm not ok with losing the rectum.
My Dad was diagnosed last week with colon cancer. Luckily it has not spread and it's being removed today by the same CRS that made my stoma. This has given me a new perspective.
 
I'm so sorry to hear that thinking of you and your family. Wishing him a speedy recovery. Hopefully it will settle down for you... Here if you need me. I don't blame you for not having rectum removed. I wouldn't have if I had a proper diagnosis. Wishing you all the best
 
Hiya all I had my ileostomy reversal done just a week ago, and must say the few days were hard as was in a lot of pain, but now I feel much better. My bowels opened for the first time in a year 2 days after surgery and literally had to run for it!! Thankfully I do get warning prior to needing the loo but must say how great it is to finally be able to use my bottom again..even though it is very sore and feels like its "burning" when I'm passing. I have stocked up on creams etc which have helped.
My movemnets are starting to form now though and not constant "water" which is was for the past few days, so may venture out tomorrow to see how I cope? I do have a nappy incase though, rather be safe than sorry :)
 
Were you guys told to do kegel exercises before your reversal? How much in advance? I know they want your anal muscles strong to try to hold back on poop. Last thing we want is accidents.
 
nogutsnoglory said:
Were you guys told to do kegel exercises before your reversal? How much in advance? I know they want your anal muscles strong to try to hold back on poop. Last thing we want is accidents.
Click to expand...

No-one told me about these?! They sound interesting. My anal muscles are probably the only well defined muscle in my body right now. There have been moments whilst shopping recently where it felt like a do or die moment, and there have been no toilets. Never have I done my shopping, or walked home with a waddle faster in my life...
 
My reversal is going great.
Having a flare though.
Back on Pred.
Find out Weds what the GI plans to do to kick start remission.
Swings and roundabouts!

My scar is very impressively awesome too!
I'm very proud of it.
 
Hi I had my reversal done 2 weeks ago, b ut does anyone else have a throbbing pain by their stoma site? I find it difficult to bend forwards, sit up etc. For the first week I had no pain there at all, but for the past 3 days I have had constant pain. The dressing is changed daily and the nurse said it is healing nicely with no infection, but the pain is difficult to cope with. Would be grateful of any advice? I'm on tramadol and paracetomol but to little effect :( Thanks in advance
 
Your surgery was only 2 weeks ago and everything is probably still raw. If it gets worse see your surgeon but any pains in the first few weeks at the site of the operation are most likely normal unless you have accompanying symptoms like fever, distended belly etc.
 
Feel better, rest up and try not to bend too much or do any lifting. I hope your reversal is a success. Keep us posted.
 
Hey willow, has it got better? How you doing Samboi?
Sorry for being so appalling at posting, just been so busy with Uni stuff, exhausted most the time.
Still get bad d at times depending on how tired / happy/ sad / hormonal I am but seems to be getting slightly better... thank god
 
Reversal is all good.
Scar is healing.
No return of the severe perianal disease that brought me the stoma.
Intestinal flare though - the Humira is not working so I'm also on Pred.
6MP failed. So just waiting to see what control med the GI will try next - I'm almost out of options.
But the reversal - wow - just delighted. Could not be more happy.
 
Samboi, sorry If you've mentioned it before but how much colon do you have left? I'm hoping for a reversal in January and so you're story gives me hope.

K x
 
My colon was only given a trim.
I have plenty left - although they found equivocal dysplasia in the bit they snipped out - so it will be removed eventually.
Kela80 had his removed a few months ago and had his stoma reversed - it has worked out really well for him. His story is the one that gives me hope.
It can be done.
 

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