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8 replies

Just found this online..

T the_originalMember
So ya. Turns out I got pretty ill last year and ended up in the hospital for a month while they tried to treat me with my newly diagnosed UC. I had lost 52 pounds (20 or so kg) in just over a month and had some pretty intense bathroom sessions in which they were pretty graphic before they sent me off for my colonoscopy. They didn't seem very optimistic from the start about medical treatment and a month later I had my large intestine taken out. I just got back from the hospital yesterday after my J-Pouch construction phase (2nd of 3 surgeries including colectomy) and have now finally decided to check out online what these rad little pieces of intestines will bestow upon me in the near future. I might add now, that after perusing this forum for over an hour that I'm a bit discerned that there is quite a bit of negative shop talk about the reconnection part.

It seems to me most negative comments so far are people who have had their surgeries back in the 90's or earlier, is the risk of failure as high now than back then? Surely it's not.

I dealt with the 6 month, physical ileostomy transition surprisingly fine after a month or so and I found the toughest part was the mental battle, especially being a single male who enjoys his bachelorhood quite frivolously, as dealing with a bag with a tongue-like piece of intestine sticking out into it was pretty much the worst idea imaginable. I got back into skateboarding a little bit and actually became a bit more active overall.

I have opted for the J-Pouch as I've heard mostly good reviews about it, I haven't experienced too much other than minor dehydration so far (touch wood) with anything else, and I was hoping to get some feedback from anyone else who has dealt with this, which is all of you I would say..

Also, after my shower today I had a nap and things started functioning in my male-ness again after basically being dormant for the last 2 weeks, I was shocked to find some pretty scary looking bruising and adjacent pains with this temporary maladjustment. I then googled it and it led me to this forum and apparently this is normal, yay!

I was hesitant to join the online world about this and was just going to go about my life as if nothing ever happened, but now I'm glad I've read some real life experiences..

Yours Faithfully,
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rachelravenrachelravenMember
I will say that my GI is saying that the longer one has a pouch, the "older" the pouch is (not the older the person), the more issues are happening to them, down the line. Not to frighten or scare you or whatever, but he says they used to use the word "curative" with J pouch surgery, and now they don't (at least he doesn't). He counsels people that in the lifetime of your pouch, you have a 50/50 chance of *some* complication down the road (be that mild pouchitis to a new dx of Crohn's... runs the gamut).

I had 20 great years, and my pouch, for the most part, is still doing great. Just some other issues surrounding it. I don't regret my surgery at all. It's been a million times better than having UC with a colon, even with the newer problems I've developed.

So. With your new pouch, you may have 20 great years like I did, then something might happen. Or not. It's a crap shoot.

He did say that your genetics don't "go away" with removing the colon (which I figured). They are seeing gene mutations in the pouch, where the mucosa is converting, over time, to a more "colonic" picture (he said to me that pathology on old pouches, when the pathologist doesn't know it comes from a pouch, will often read as "colon.") Also, the fact (in my mind) that pouchitis is almost exclusively a problem of patients who have J pouches because of UC vs those with polyps says something to me about our innate issues to create some sort of "inflammation." I mean, that HAS to be a reason... why else would it strike UC pouches vs. polyp pouches? There's got to be something to that...

Since that might be the case, that the pouch may have these things happening over time, it only makes sense that genetics that target a colon in the way ours did with UC *could* potentially start something new there in the pouch, as the years progress.

Is that a reason not to have a J pouch? No. I'm still a fan. I was only 19 when I had my surgery completed, and it gave me years without an external appliance, which was/is great. I deal with my issues now... I don't love them, but I deal. They're still better than having full on UC flares ANY day.
SpookySpookyMember
I echo what others have said. On a forum like this, you typically only hear from people who are having problems. There is a much larger portion of people who have had this surgery and have few if any issues. They are out living their lives, not bothering to post here. Thus I would not encourage you to heavily base your decision on what you read here.

But, since you are here, I will throw in my two cents. I have had my pouch for over 6.5 years. I had an ileostomy for 2.5 years previous to that. I have had some issues since my takedown, but the vast, vast majority of my days are great. My pouch function is excellent. I take no meds (not even imodium). I am also very active. I work full time. I in fact part-own a horse and I ride twice a week. I also do 3 yoga classes a week, jog, and do weight training. Overall I am very happy with my pouch. While I certainly didn't hate the ostomy and would go back to it if I had to, my quality of life with the pouch is much improved and I am extremely happy with the decision I made, even with the one or two hiccups I've had to deal with. I have never once regretted getting a j-pouch. In truth, most days I do feel like I have my "normal" life back. I would not trade that for anything.
D DogMember
quote:
I might add now, that after perusing this forum for over an hour that I'm a bit discerned that there is quite a bit of negative shop talk about the reconnection part.


I think our adventures in UC are similar. One day, I started being gassy. 10 days later, I'm in the hospital crapping myself to death. One month later, I've lost 50 lbs and had a total-colectomy.

Hang in there, I've had no issues with my pouch!
T the_originalMember
Cheers for the replies guys and gals! Yeah, I was only diagnosed with UC about 25 before my colectomy, I was in bad shape, months of bleeding and weight loss, my haemoglobin was at 59 and I had to get repeated blood transfusions. They admitted me straight after my colonoscopy (or at least partial as they couldn't get past my rectum apparently) and tried treating me with everything.. I did one dose of Remicade on a Thursday and the following Thursday the gave me a double dose of Remicade. To my dismay, none of this worked and I was quite shocked on what was happening.

Needless to say, with low haemoglobin like that and how sick I was before the surgery, recovery succccccccccked and it took me awhile to get back on my feet, but once I was I was fine and adjusted to life with an ostomy without telling anyone I knew. I was being active, gaining weight back, eating EVERYTHING I wanted, drinking coffee, alcohol etc.. with no issues whatsoever. Although I had been diagnosed only just this year, I knew for a long time that something was wrong, and I had had flare ups before but never knew what they were and they usually just went away on their own.

I'm happy to report that 11 days after my construction surgery I'm feeling pretty damn good. I'm not out and about or anything yet, but since I've been home a few days ago my health has sprung back 10 fold.

I've been pretty blind to this whole thing more or less due to me being scared that these reconstruction surgeries wouldn't work, and yesterday was the first time I really looked into any of this online. I wasn't even sure what a J-Pouch was until after they made one inside of me. I made an instagram account strictly for this to kind of document my progress and I'm blown away on how big this community is and how many people are open about this..

Thanks everyone for their 2 cents, I think all in all I'm pretty happy that this is something that can be managed

Yours Faithfully,

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