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Am I crazy for not wanting a J-Pouch?

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Ulcerative Colitis
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Posted 8/26/2017 2:00 AM (GMT 0)
Thanks cupcake, your insight really helps.

May I ask how long you thought you had UC before being diagnosed with Crohn's?
Posted 8/26/2017 3:29 AM (GMT 0)
You're welcome.

Mine is a complicated history. I was diagnosed with crohns, changed to UC, one doctor just called it indeterminate colitis, then IBD specialist said diagnosis was UC, scheduled for Jpouch surgery in 2015 until I ended up in ER too sick for surgery and Colorectal surgeon decided no jpouch because he was 99% certain it was Crohns, then pathology from my colon resection confirmed Crohns.

Looking back, although my disease behaved mostly like UC and remained confined to my colon I think after my initial diagnosis was Crohns it should have never been changed.
Posted 8/26/2017 3:40 AM (GMT 0)
Oh man, that doesn't give me a lot of confidence in my diagnosis. That is another reason that is probably pushing me slightly toward the ileo rather than j-pouch. I was initially diagnosed with Crohn's (based on pill cam results) and then changed to UC after my colonoscopy 3 weeks later. On the off chance it is Crohn's, I'd be saving myself a lot of surgical work down there by going straight to an end-ileo.
Posted 8/26/2017 1:08 PM (GMT 0)
I'm sorry, noodles, I never read your sig before but having just read your last post and your sig, I would be ultra cautious about going for a j-pouch - if that was Crohn's in the ileum, a j-pouch would be an absolute disaster. If you're still considering a j-pouch, then get as many tests and second opinions as you can before surgery - you need to find out what that ileitis inflammation really was.

My colitis seems to have been on the indeterminate side too (biopsies from my surgically removed colon came back negative and at least one doctor years earlier sounded puzzled over whether I had UC or Crohn's). However, because I had Crohn's in the terminal ileum (I eventually developed a stricture there), that nailed down a Crohn's diagnosis for me.

I am glad cupcakespinkgal confirmed what I said about adapting to the stoma! J-pouchers base their opinion on a stoma after only having it for 2-3 months, whereas you really need to have a stoma for about 12 months to know the full story. Things might get better or they might not, but if you have a reversal after 3 months, you'll never know. I was waking up 1-2x a night with my stoma for the first few months, then gradually I was able to transition to sleeping throughout the entire night. On the other hand, there are some ileostomates who will always need to get up in the night to empty their bag. (But then, after a certain age, most people need to get up in the night to have a pee. I don't - yet.)

And yeah, I appreciate most folks with j-pouches don't want to, or can't be, hanging around for 12 months before their next surgery.
Posted 8/26/2017 1:10 PM (GMT 0)
Yea, unfortunately anytime there has been a hint of Crohns I think patients should proceed with caution for jpouch and trust your instincts.

I was very nervous and unsure about the jpouch surgery, I think because I still didn't trust my diagnosis, even though the GI was pretty convincing to everyone why it was UC. They originally discussed 2 step surgery with me, then when I voiced my hesitation to the CR surgeon he agreed 3 step was better in my case.

He was conservative and agreed if I had any doubt about the jpouch we need to do 3 steps. I also think i started to make him concerned he was about to jpouch a Crohnie! I definitely needed surgery so in my case it was just a matter of ileo or jpouch.
In the end my colon spoke up, as soon as my CR surgeon saw my CT from the ER he changed the whole plan around.

I was only 37 at the time and my GI and some family thought it was too soon for an ostomy but in my case it was the right decision and greatly improved my quality of life.
Posted 8/26/2017 2:38 PM (GMT 0)

NiceCupOfTea said...
I'm sorry, noodles, I never read your sig before but having just read your last post and your sig, I would be ultra cautious about going for a j-pouch - if that was Crohn's in the ileum, a j-pouch would be an absolute disaster. If you're still considering a j-pouch, then get as many tests and second opinions as you can before surgery - you need to find out what that ileitis inflammation really was.

Yeah, that makes sense. My doctor initially told me there was no ileitis and the pill cam just made it look like my cecal inflammation was in the ileum (something about the camera moving in and out of the ileocecal valve). Later, when it was found I was struggling with B-12 deficiency despite having injections, she admitted I had backwash ileitis (or what she believes is backwash ileitis, I guess). The majority of my pain from the start and on an ongoing basis is just to the right of my belly button.

But what really gets me is that the pill cam also found a few aphthous ulcers in my jejunum. My doc dismissed those without providing me an explanation.


NiceCupOfTea said...
I was waking up 1-2x a night with my stoma for the first few months, then gradually I was able to transition to sleeping throughout the entire night. On the other hand, there are some ileostomates who will always need to get up in the night to empty their bag. (But then, after a certain age, most people need to get up in the night to have a pee. I don't - yet.)

I am one of those people who always wakes up once a night to pee anyway. When you say you had to wake up - do you mean just because of the bag being full or because of pain, etc? Also, how long does the stoma area hurt after surgery?
Posted 8/26/2017 11:56 PM (GMT 0)
What the hell? Either that doctor is incompetent or deliberately withholding info from you - I'd consider looking for another doctor. I can't diagnose you with Crohn's, and I wouldn't even try, but there are definitely some alarm bells going off for me.

When you say you had to wake up - do you mean just because of the bag being full or because of pain, etc? Also, how long does the stoma area hurt after surgery?

It was because of the bag being full. Not sure how my brain knew to wake me up, it just did.

As for post-surgical pain, it was about 4-5 months before every last trace of pain was gone for me, but I had open surgery which makes a big difference. Also, when I talk about pain the really bad pain was gone within weeks. I'm sure I could have been off painkillers after 3-4 weeks, but I ended up on oxycodone for 2 months and then having a withdrawal from hell. Moral of the story: don't stay on strong opiates for any longer than absolutely necessary :-/
Posted 8/27/2017 12:34 PM (GMT 0)
I did not read through most of this thread but I just wanted to say my j pouch has been a life saver for me. When I had the temporary ileostomy in place I had a really tough time with it (not mentally but physically) Not something I wanted to have to deal with on a daily basis so I am very grateful I could have the j pouch.

If that time ever comes comes you would have to do your homework and make sure you know all the pros and cons of both and make the decision that best fits your lifestyle. And no, you're not crazy for not wanting a j pouch. But do educate yourself about it and talk to people who have one. And btw, having a j pouch is NOT having diarrhea for the rest of your life. Lol. Again, educate yourself about j pouches.
Posted 8/27/2017 7:36 PM (GMT 0)

NiceCupOfTea said...

iPoop said...
1.) You cannot wait indefinitely to decide if you want a j-pouch or not, as your sphincter muscles will weaken when not used, which would lead to incontinence when a j-pouch is later attached. The surgeon will tell you how long you have, maybe 6-months, likely not a year.

Well, this one is news to me. It didn't happen to me, and I had an ileo for 2 and a half years. Is that 'cos I went back to using my own rectum rather than a j-pouch?

I just saw a post in the Ostomies forum of someone sharing their J pouch experience who said they had their ileo in 2006 and J pouch surgery in 2008 so I don't know how accurate that is.
Posted 8/27/2017 7:47 PM (GMT 0)
I'd ask a surgeon then. My understanding is you cannot wait forever. I could be wrong *shrug* who knows ask the pros lol.
Posted 8/30/2017 9:50 AM (GMT 0)
My surgeon told me I could have my second surgery (to remove the rectal stump and make end-ileo permanent, or to go for the j-pouch) any time from three months onwards. He gave three years as a ball park figure for the maximum time he was happy for me to have a rectal stump. His reasons were all to do with long term cancer risks due to ongoing UC in the stump.
Posted 8/31/2017 1:57 AM (GMT 0)
Thanks, Albannach.
Posted 8/31/2017 2:49 AM (GMT 0)
I have Crohns and I now have a colostomy. I have had it almost one year now. I too carried an emergency bagprior to the colostomy. It was actually bigger than my colostomy emergency bag is now.. I had open surgery. It hurt for about 6 weeks. I took pain pills for 48 hours after they sent me home. I started weaning myself right after surgery. I wake up nightly to go pee so I empty my bag then. There have been a few times where I woke up and my bag was super inflated. My stoma woke me up with little mini cramps when it happened. I empty alot more than most people-probably 8-12 times in 24 hours. It took me 10 months to find a system that worked for me. I still have my rectum. My GI keeps saying we can hook me back up...but Crohns comes back when you are hooked back up. My CRS will hook me back up but states there's a 99% chance the Crohns will come back....so I am not interested.

It takes me less than 5 minutes to change my appliance including removal of the old one. Remove, clean, barrier wipe, stoma powder, barrier wipe, eakin seal, wafer and then attach the bag. No big deal. Bull101 was correct in stating there can be some skin irritation from the barrier. I get that when I get hot. My bag has filled up with gas a couple of times when I was out and had soda. Just went to the rest room and burped it. No big deal. It has decided to sing and grumble a couple of times also. I received some looks but I was laughing too hard to care.

I would continue to research and make the best decision for you. The people here, their experience, and advice has helped me get thru the hot spots. My experience has not necessarily been like anyone else's but their expertise helped me to know when something was not right.

My stoma saved my life...it saved my sanity and it even made my quality of life better in some ways.

Good luck!
Clo
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