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Do you still get associated problems with stoma?

Welcome to MeetAnOstoMate
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Posted: Sat Jan 29, 2011 8:16 am
Hi everyone I have ulcerative colitis and find it very difficult to go out places because I cant hold it. I have tryed quite a few drugs now, none of them seen to work very well apart form steroids.

I'm sure there is always more drugs they can find to try out but. Would getting my colon removed and the stoma also stop me getting the associated problems with my eyes, joints, ect.

I would like to know if people still get joint, eye, ect problems associated with ulcerative colitis now they have a stoma bag or not.

Hope you can help with my question. I miss going out to new places for the day. Work and food shopping is all I do these days.
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  Past Member
Posted: Sat Jan 29, 2011 2:45 pm
After the colectomy I noticed relief from many things that I hadn't associated with the UC before like joint pain, etc.  I never had the eye problems though.  Frankly, my health was greatly improved after surgery and (knock on wood)  I've had no other autoimmune response type affictions since the surgery.  That was over 5 years ago.  Good luck with your decision and your health.
Posted: Sat Jan 29, 2011 3:55 pm
I too found much relief from Ulcerative Colitis after my ostomy.  The drugs I had been on before surgery were really starting to affect my health.  One thing I would recommend though, is to make sure they remove your entire rectum when you have surgery.  They did not do that for me and I sometimes get discomfort in my rectum which my new doctor has diagnosed as a continuation of my UC but just relegated to my rectal stump.  It is not life threatenning or anything, but it can cause some major discomfort.  In retrospect I am glad that I had the surgery because now I don't ever really worry about going to the bathroom any more.
Posted: Sat Jan 29, 2011 6:56 pm
I will have to agree with the others. Having an ileostomy gave me a new lease on life and freedom from constantly going to the bathroom. I can remember having to wake up several times a night to go to the bathroom as well as during the day. After my ileostomy I felt great. Other than the Crohn's I don't really recall any of the other health issues you mentioned. In fact, until the last year I never took any kind of medication at all since 1978 when I had my ileostomy. I just started taking blood pressure medication, but I don't think high blood pressure has anything to do with the Crohn's. It's probably from working for lawyers and having an 11 year ild daughter (LOL).
Posted: Sat Jan 29, 2011 9:49 pm
I had my ileostomy along with removal of my rectum in 2007.  I have had UC since 1986 and failed all medications,  and my disease got worse using Cymbalta an antidepressant that should not be used for people who bleed (or don't have a colon)  Anyhoo-  the only assicated problems I have had since my colon etc was removed is the skin and mouth sores I have had during the entire course of my disease. I also have some scar tissues in my eye from the past but the eye doc says there is no evidence of problems since my colon came out.   My life is one million times better since the surgery and with the bag.  I have been soooo healthy since then.  
The challenge for me now left over from having gut problems for so long is now when new problems creep up I always assume (and have convinced the ER staff) that the problem is related to my gut problems.  The local hospital emergency room knows me well and has gotten to the point where I tell them what's wrong and how to treat it and they usually follow my lead.  About a year ago  I developed wicked pain in one area over and over again-  I assumed it was an partial obstruction due to strictures and thats what I told the doctors who believed and treated me as I asked-  in reality it was a benign but wicked painful tumor on my girl parts.  If I hadn't convinced myself and the small town docs that it was an obstruction and all I needed was IV fluids and zofran perhaps I would have been diagnosed and treated succssfully earlier.  I finally stumbled into a new group of doctors due to a change in my insurance,  they convinced me to undergo some tests and wah lah  turns out my small intestine is fine with no obstructions or strictures,  the treatment to shrink the tumor is fairly simple and so far seems to be working- its only taken 6 weeks to shrink it enough for the pain to go away.  I wasted a year in pain because I was stuck in the past.  I have a healthy gut now and just have to get used to it- ya hoo.
Posted: Sun Jan 30, 2011 1:26 am
hi hotstuff i,ve had an ileo. for the last 25yrs. and its due to having U.C., having an ileo. gave me my life back, i was tied down to the toilet before i had the surgery a total procto colectmy and now i do everything i want to do not to mention working full time.  ron in mich.
Posted: Sun Jan 30, 2011 3:41 pm
At first I was reluctant to go very far from home after my surgery. Like you, with my UC, I had to know where all the washrooms were, had pads and cleanup cloths and underwear with me, etc.

But now I go everywhere. Just came back from Hawaii where we spent the major portion of every day snorkelling! Went hiking to remote beaches with NO FACILITIES.

You get used to what you need to have with you -- and I've found that I go to my 'travel supply bag' very infrequently now. I always have a couple of pouches and flanges, wipe cloths and ziploc bag/plastic bag with me -- sounds like alot, but all fits in a small medium ziploc. In the car I have a plastic wide mouth jar (wrapped in an opaque plastic bag - more aesthetically pleasing ) for when I can't get to a washroom to empty.

When we swam and hiked, I added a Starbucks lidded cup to emergency emptying and used that once.

I thought all this would be a depressing hassle ... but no. Yes, sometimes I have to empty when it's not what I want to be doing at that time. I'm just over a year into living with my ileo and making it work.

All the best,
Beatrice
p.s. a 6" rectal stump was left ... will have another surgery to remove it as the UC is active in the stump. Rectal Cancer is still a possibility when active disease is in the rectal area.
Posted: Sun Jan 30, 2011 3:42 pm
Thanks very much for all your replys. Its good to know how people that are living with their colon removed are coping. I really helps people like me feel more happy about making the decision to have surgery or not.
  Past Member
Posted: Mon Jan 31, 2011 9:49 pm
Herculisa,

Did you ever think that the disappearance of the UC symptoms that you had after your total collectomy (leaving you with an ileostomy v. colostomy) was due more to the removal of the meds that you were taking for the UC, like all the anti inflmmatory steroids??? It is well known that joint pain can be associated with such meds. So, please don't mix up your cause and effect something that can be easily done. Also, don't down play the placebo effect which is something that can also be a pitfall.
Posted: Mon Feb 28, 2011 7:18 pm
Hola HotStuff~~~

I had UC for 5yrs or so, had total colectomy and have temp ileostomy with a perianal fistula at the current moment. Let me tell hun- after surgery you feel so much better no more going to bathroom 20 times, accidents, and side effects like athirst joint problems, etc... I had athirst in my wrist hands back legs..there was days i couldnt walk or get out of bed unless i took tons of aspirins and pain meds. I was 60 yr old bone density with 80 yr walk, ...and im only 27 now! Smile
I still look forward the beach days with bikinis... but when i think of " oh wheres the restroom every single place i would go"... No thank you ! I love life way better now then what its was before with UC... As for food, well they say not to eat certain veggies such as corn cabbage potato skin etc... however, i eat everything especially spicy more now then ever! woohoo! anyways i hope this will help!... Good Luck and stay Positive!

Beatriz
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