Feel like I may be getting to that point -pros and cons?

I feel like I may be approaching the point of wanting a colectomy and bag. I'm in clinical 'remission' from Ulcerative Colitis due to Remicade (confirmed via colonoscopy and blood test), but I still have the EXACT same symptoms I've always had with zero improvement. I've had upwards of 10+ uncontrollable diarrhea episodes every day for a year and a half now. (Except when I've been on Vancomycin, which made my bowel movements completely normal.)

My doc is using the 'it's IBS' cop-out, and we've tried all the 'IBS' meds to no avail.

I'm 28 years old now. I CANNOT and WILL NOT continue to live my life like this. This is not a life. Ditching this useless organ and getting a bag would give me my life back. All I want is to go for a freaking five minute walk without the likelihood that I'm going to poop my pants.

So all you peeps with ostemies. Give me the cold hard truth: what's good and bad about having an ostemy?

Some people do have IBS after years of IBD however if you had improvement while on Vanco I would say it doesn't sound like IBS. Pediatric patients with both PSC and UC are now being treated with Vanco and while its being used for the PSC most patients report their UC goes into remission while on Vanco.

As far as the ostomy, the big pro for me was it did give me my life back, I work, travel, exercise all like I was never sick and I love it. I can now go on a 3 hour hike without a care in the world! I had a very poor quality of life the 2 years prior to surgery, I was on leave from work and couldn't do any of the things I enjoy. For me having a bag is a minor inconvenience for what it gave me.

Negative is being reliant on medical supplies and knowing I need those for life. However I'm no longer on any medication so that has been very freeing! Also my sex life has not been the same, however I had a RV fistula and that repair is most likely what caused my issue according to my obgyn, not the colectomy.

A few things to think about are, your current quality of life, how much the disease is affecting your day to day life, fertility if you don't have kids yet, sexual risks, and self esteem.

Have you tried budesonide?

Have you had your small bowel checked?

I've tried budesonide, and a ton of other stuff. My issue is not inflammation. My inflammation is gone due to the Remicade. My issue is relentless uncontrollable diarrhea. I'm getting my first endoscopy (and third colonoscopy) next week.

I'm not sure about a Jpouch. I'm admittedly not very well educated on any of this yet, but I'm kinda worried a Jpouch would be risky as far as accidents go?

Post Edited (Canaveral) : 6/29/2017 9:49:59 AM (GMT-6)

Very interesting! I guess I haven't looked into Jpouches enough. I just assumed that if I had to remove my whole colon, there was no hope for not getting an ostomy. What are some reasons people wouldn't get a Jpouch instead of an ostomy?

Let us know how it does with your scope. I think i'd be very cautious about having surgery with your current situation. There is no guarantee surgery will solve your problems since they are not necessarily directly related to your colon. With UC, we remove the inflammation, so we are no longer struggling with the symptoms related to the inflammation. Since you're not dealing with inflammation, what will surgery really cure?

Some people opt for the ostomy because they want to have one procedure and be done with it. Some do because they aren't a candidate for a j-pouch - questionable diagnosis, weight, poor anal function. Some want the ostomy because it is sort of a "no brainer". When you really look at the procedures, in some ways the end result is similar - you end up emptying the same # of times, one is just an internal pouch and one external. The ostomy is, in some ways, the gold standard. You get to retain more of your bowels, you are unlikely to have worries about inflammation in the future since you don't have a cuff or a pouch. it's quicker to recover once (vs two or three times), plus you likely will not have to worry about whether you will need a revision - not that pouch revisions are very common... I am thankful for my jpouch, using supplies isn't the most convenient, though with mail ordering it is as easy as it could be.

notsosicklygirl said...
]Since you're not dealing with inflammation, what will surgery really cure?

Having to literally run to the restroom 15 times a day because I will poop my pants if I don't find a toilet in under 10 seconds after I get my first warning.

All I want to do is to be able to walk to the freaking mailbox without having to worry about having an accident.

It sounds like there are advantages and disadvantages to both approaches. Jpouch seems like you can live a more normal life IF it works out, which is a big 'if' and depends on the person. Ostomy seems like it has more reliable results and quicker recovery time and less surgeries, but it's a bigger adjustment.

Post Edited (Canaveral) : 6/30/2017 7:58:47 AM (GMT-6)

Yeah my urgency is insufferable. I don't know that I would even call it just 'urgency,' because it's not just my rectum that's causing it: the cause is that my entire colon from cecum to rectum suddenly contracts hard and fast, forcing everything out like a tube of toothpaste. I literally do not have enough capacity in my rectum to contain the volume of stool that my colon is forcing out. My quality of life is abysmal because of it, and I refuse to keep living this way.

With ostomies, can anyone speak to leakage? I've heard some pretty horrible stories about people waking up in puddles of poop.

Leaks can depend on a few factors like loop vs end, the stoma length and placement , and properly fitting appliance.

I had a loop for 3 months and now have my end oleo for 16 months. I've never had a leak where I woke up in a puddle of poo. Over this time I've had a handle full of minor leaks where I start to feel an itch or smell a slight odor and I can see the start of a leak under the wafer so I change my appliance before it is an issue. I also sleep through the night. about 25% of the time I will wake up around 3-4 am with a full bag and empty. But most nights I don't empty and just empty right when I get up.

Some people that have leak issues have a flush or too short stoma and have a hard time getting a good seal. That is one question to ask the surgeon how long do you make your stomas? You do not want a flush stoma. Mine is 1 inch. Sometimes it can't be helped if you have already had multiple surgeries, are overweight etc. But most individuals should have a stoma 1 inch to 1 1/2 inch if the surgeon does his job right.

I feel for you. Right before my second surgery I sometimes couldn't make it from the couch to our closest bathroom in time. That was one of my biggest factors because even having accidents at home was no way to live. And like you I couldn't do anything or go anywhere. Even getting to the doctor was an ordeal, I couldn't eat, would take Imodium and wear a diaper.

In my situation my surgeon thought part of my issue could have been damage to my muscles from prior severe inflammation. one other thought since you said Vanco does help could there be a bacteria issue? Or yeast issue? Have you tried a probiotic like Digestive Advantage that can help with bacterial overgrowth and diarrhea?

Post Edited (cupcakespinkgal) : 6/30/2017 11:08:34 AM (GMT-6)

Pro: Wayyy better than UC.

Con:Changing the supplies, but a welcomed annoyance after UC.

I have a J Pouch which has made things even better. Its person to person but mine is awesome.

Canaveral said...
Very interesting! I guess I haven't looked into Jpouches enough. I just assumed that if I had to remove my whole colon, there was no hope for not getting an ostomy. What are some reasons people wouldn't get a Jpouch instead of an ostomy?

Crohn's.

Great news about the plan. You have to remember that generally people on messageboards and social media are people who are struggling. People who are doing well are less chatty. Of course, there are people that go 20x a day, and there are also people who empty 4x a day. You shouldn't assume ,you will be the worst case scenario (or the best - aim for average). It's hard, we all feel like the worst will be our situation. I know I worried I would be worse off, but I am not, I am so much better off than I was. I was in bad shape though. if you're doing well, or even OK, you may not have the same perspective. It wouldn't take much for me to have improvement compared to how I was.

Just popped in for a peek for old times sake... I have an ileostomy and have not been here in ages (and will disappear again for ages) because I basically have no issues whatsoever with ileostomy life since I got one around 4 years ago (and I was battling moderate to severe UC flares for over 10 years unresponsive to everything)... Never tried, or wanted, a jpouch (I still have a non-problematic stub rectum that I will ditch "one of these days", but don't want jpouch) but as far as pros and cons already mentioned, wanted to de-con some from my own feared ileostomy cons from my own personal experience:

-- Having to buy supplies: not a con for me as it is 100% covered by my insurance
-- having to carry supplies in case of emergency: very minor con for being out and about in the day- amounts to a small wallet sized emergency pack in a tiny ziploc; traveling, it adds a negligible amount unless one is travelling for months and even then amount is small.
-- noises: literally zero con or issue for me once initial post-op months were over, silent as a churchmouse
-- bulging under clothes: I use form fitting stoma boxers from Ostomy Secrets that keep my stoma pouch snug, comfortable and form fitting... no bulge unless I eat like a pig and don't go to the bathroom for hours and hours all day long, but in practice one has to pee and that is as good a time as any to empty it all out long before it is ever visible. I guess for me a minor con in that I wont wear tight shirts, but I never liked tight shirts. (My wife misses em a bit tho lol).
-- blockages: zero-con for me once initial post op months were over and I understand to chew food well and not do stupid things like, say, eat a pound of dry almonds non stop in one sitting.... I can eat anything I want but have learned to avoid mass quantities of popcorn or almonds and instead eat varied foods and not pig out on food that doesn't chew or digest in the stomach into a liquid mulch.

As for a pros that I plausibly enjoy over a jpouch:
-- never having to worry about having to deal with urge to go to bathroom again, ever, period, or having to rush to hold it in... with an appliance it is a gradual process and there won't be a sudden crisis, and warning time to need to empty is measured in an hour or so vs possibly minites I guess depending on the sensitivity in ones rectal nerves with a biologically internal pouch
-- having the option of swapping out my bag instead of emptying it in situations where a bathroom or public defecation spot is not available... I could just pull my pants down a couple of inches, pull up my shirt up a few inches, and swap it out in seconds... Not difficult for me to do cleanly once one has practiced and has basic understanding of whether it is esp. active at that moment-- not my first choice, but something that for example Blue Heron on this forum, who is mountain climber, chose an ileostomy over a jpouch for, since pooping on the side of a mountain cliff isn't an option. (This requires, as a matter of obvious etiquette, wrapping up the expended bag and disposing it in the trash later like one would a dirty diaper).


Christopher, very satisfied ileostomate

Post Edited (Probiotic) : 7/19/2017 10:52:25 AM (GMT-6)