great perspective on Colectomy not "curing UC"

https://keepingthingsinsideisbadformyhealth.wordpress.com/2013/07/16/can-ulcerative-colitis-be-cured/

Great advocate in the IBD community wrote a blog piece about her recent Colectomy surgery. And her perspective on the "cure" she received.

Thanks for sharing this, very good stuff! Every time I see surgery referred to as a "cure" for UC, it really gets under my skin. Not just for the reasons mentioned in that article. Problems with the colon are not the only symptoms/issues that can be caused by UC. Yes, the colon stuff is THE worst of what UC has to offer, but there are many more parts of the body that can be effected. And the possibility of developing some of the other symptoms does not go away once the colon is removed.

You should all consider it a cure. Once you consider it a full cure, even the mental aspect (placebo) will play a role and making you feel even more cured than you are.

If you have major surgery and then you don't adhere to the belief that you are cured, you will never feel right.

At least thats how I view it.

"...other than going to the washroom a bit more than they would normally."

Surgery is not to be taken lightly as it is complex and not easy peasy. But the bathroom visit thing. seems to be a common misconception by surgery avoiders-- one actually does not go to the bathroom , minus a colon, any more often than a normie with a colon (though one does go less often, probably much less often, than a typical UCer that is not in 100% remission). This is because normies go to the bathroom to pee more times a day on average than any jpoucher or ostomate will ever go to empty their pouch. Minus a colon, some bathroom visits are twofers i.e. combo no 1/no 2's. So the bottom line is that after surgery one doesnt visit the bathroom more often than a normie, and normally it will be much, much fewer daily visuts than with UC. As to total TIME spent in the bathroom, speaking as an ostomate I can say it'smuch less even than a normie, and a massive reduction in time vs my UC days. I usually empty the pouch in about 15 -20 seconds plus another 15 s or so to clean the tip with TP and then a quick handwash. Compare that to the 20 minutes plus I often spent on a bathroom visit with UC.

Post Edited (Probiotic) : 7/16/2014 8:26:45 PM (GMT-6)

one actually does not go to the bathroom , minus a colon, any more often than a normie with a colon

Yeah, I do. Go to the bathroom way more often than I did pre-Crohn's. Only had a BM once a day pre-Crohn's; I hardly ever had to go to the toilet. Now if I go out for a few hours, it seems like I have to go to the bathroom at least 2-3x to empty the bag. It also takes me about a minute to clean the tab; quicker if the consistency is very watery, longer if the output is a gunky nightmare. I can't hurry this stage either, 'cos otherwise there will be seepage, which makes the velcro tab yukky.

Even my life with early Crohn's was simpler than it is now, 'cos I only had 2-3BMs a day back then and was literally done in seconds; IBD in Easy mode. (You play videogames, don't you? <_<).

Anyway, nitpicking pedantry aside, I read the article and fully agreed with it. Nothing which leaves you with a permanent ileostomy or 4-8 BMs a day is a cure in my opinion.

Nicecuppa, I was NOT talking number of BM's, was talking number of bathroom visits. That said, you seem (?) to have high output. I go around 6x a day to empty (could do 3x a day if I didnt care about the bulge) and usually pee then too , which is less than the number of times i go to to the bathroom period either now or pre surgery or pre-UC. I think pre UC AND IN uC remission (which was rare for me in the past 10 years) I did BM once a day but I went to the bathroom to pee another 6-8 times a day or so, sometimes just a few times if I didnt drink enough or was sweating out my pee due to exercise and obviously not drinking enough water. I had an iron bladder as a youngin' but after that one cant hokd pee in more than a few hours.

Now, re. the little article-- of course i think it speaks volumes to how primitive so-called modern medicine is that "in order to save the billage we had to destroy it" so to speak, but that said, speaking from personal experience only, life with an ileostomy for me is noing more than a very minor inconvenience vs life pre-UC. I honestly feel that I spend less total time in bathrooms than normies (yes, normies! As a pre-Uc normie I used to sit 20 minutes or so in the bathroom after breakfast, just as my wife does now, and my total visits to the bathroom now total less than that), and ostomy life does not affect my day to day life in any tangible way. Am i atypical? I cannot answer that question. I am grateful that i dont have skin issues, nigh output or whatever, and hope those that do (or have chronic pouchitis with a jpouch or urgency with a joiuch or whatever) find answers, all I am saying is that for me personally, someone who desperately tried everything to avoid surgery for over ten years, i truly am 100% in the camp that wishes I had done this a decade earlier. Life is good now, without qualifications a million times better for me than with my IBD sizzling in semi-remission even.

Post Edited (Probiotic) : 7/17/2014 6:42:50 AM (GMT-6)

Sometimes it is surgery or die.
In my sons case he was crapping all blood about 35 times a day and a lot of it,sleeping by the toilet.
The is was after colon rescue therapy failure,lost about 40 pounds real quick.
They could not even do the colectomy for about a week and a half until he was stabilized from
dehydration and malnutrition with TPN.
Part of the problem people have after colectomy and j-pouches is pouchitis, some of the pouchitis is caused by cuffitis,due to UC still in the 1/2 inch of rectal cuff they usually leave.
While cuffitis is easier to control with meds than UC, even that 1/2 inch of rectal tissue can make
you real sick.
Old Mike

I'm cured. I don't have UC and I don't have UC manifestations, and I don't have other AI diseases. When they discover more about UC they will find it has many subsets and as we know treatment varies from person to person, just as surgery results vary from person to person.

It's definitely not a cure for everyone but I think most people would say that life is better post surgery even if they have other EXI problems.

Sue

Right on CarenZ. I play tennis for hours (no need to empty, I know how to time out eating if I am going to play for a few hours), I bike, i hike, I travel, with hardly the slightest thought about my ostomy. And yup, emptying is darn fast, a minute or so tops. You are doing fantastic for weeks out so this bodes very well in a few months.

@eva lou- yeah re. Meds year after year-- aint that the truth. I was low dose pred dependent but even all the non pred drugs did horrible things to me-- gave me bursitis, cellulitis, headaches, fatigue, nausea, you name it. So happy to be just eating real food again and full of energy I was drained of whether due to pain, meds, or both when with UC.

Ref the one minute wonders of preUC or full remission some report- more power to you, but In my experience most normies are on the constipated side and need awhile to finish the job. Either way, I dont spend any more time in the bathroom than a normie does on average. As a male, the one slightly obnoxious thing for me is that mens rooms often have just one stall. With an ostomy, since there is no such thing as urgency and one can wait hours if need be, that isnt a true issue but if you are in a hurry to get the job done for some other reason it may mean finding another mens room. Years of UC though developed in me a sixth sense on hiw to sniff out the quieter hidden public washrooms.

Post Edited (Probiotic) : 7/17/2014 11:13:42 AM (GMT-6)

yeah, this is an interesting question... while I consider myself to be cured of UC, there is no cure for UC, really. I mean, I love the ostomy compared to my colon- I have boundless energy now, take no meds, go hiking, biking, swimming, day trips, kayaking, you name it... all the things I tended to avoid due to the "What if...?" nature of poorly controlled UC. And heck yeah, I'm far happier now than I was pre-surgery. But it's not a true cure. Surgery, I mean. Whether you go the j-pouch route or an ostomy, I consider both to be just treatment options for IBD. Probably the best out there, truthfully- little to no risk, minimal expense (after initial surgical costs), very good long-term outlook... I shudder somedays to think of all the drugs I pumped into my body over the past 12 years. It's kind of gross! My poor liver.

Never got a chance to check back on this post.
interesting replies.

I do consider myself cured of UC. Well... once I get my rectum out and stop having mucous and urges. I even had tenesmus a few times! Did not feel good on the surgery parts!

I just found her blog post to be really interesting... a neat perspective.

I think I will always talk about UC and say that I have it when I do talk about it... atleast I still call it My UC when I talk about it... but I do feel cured. Remove the diseased organ... Remove the disease.

Though extra-intestinal things can still happen and that sucks. But usually those things lessen as inflammation lessons in Active UC so not having UC helps them happen less.

Currently I am not even 4 weeks out and I empty about 5 times a day and once at night when I get up to pee anyways. Having a bag is no where near the hell of having UC (for me) and I am so glad I dont have to deal with UC anymore!

Of course I had to have my colon out. No med was helping and without steroids to help get me from one med to the next, or holding out for a new med.... I haf no choice. Hell, I was in the hospital for a week a month before my surgery!

But yes... love perspectives and different voices.
I use healing well, Twitter and recently Facebook - for my support needs.
I like the different attitudes and perspectives.

I used to think having your colon removed would be the worst possible thing. After reading about some experiences regarding colon removal, it seems like it isn't as bad as what I thought it was. I thought you would be confined to an extremely limited diet and have limited energy and just kind of be a shell of a person. But it seems like that is far from the case. Even though having your colon removed is no easy decision that should be taken lightly, I feel if my disease takes a turn for the worst, all is still not lost.

As far as calling it a cure...perhaps it might be more accurate to call it permanent remission? But if you feel cured and better, I say, more power to you. Enjoy that feeling to the fullest.

Ideally, a cure would involve finding the cause or causes of UC and treating those instead of just the symptoms of the disease, and it didn't require lifelong use of any sort of medication. Maybe those standards are too high, but I have hope that researchers will get there eventually. Establishing the cause(s) of UC would be a great first step.

I have had surgery, I have no colon, I have a permanent ileostomy. I feel great! I do everything I did pre UC. I don't mind my ileostomy one bit...it doesn't restrict me, it doesn't disgust me, the little problems I have with it are no big deal to me at all. I am VERY happy and satisfied with my choice to TREAT my UC with surgery.

That said, I am not cured....there is no cure. Taking out my colon did not take away my UC, just got rid of the part of me most effected by the disease.