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Life after permanent ostomy bag

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Posted 4/9/2010 9:36 AM (GMT 0)
My wife has been suffering from UC since last 8 years. 4'11 weighs 36 kgs. Stool once or twice per day and about 1 tablespoon dark red blood in each stool. She also has piles problems, which has been painful since last couple of days.

Although surgeon advices against surgery, we are thinking desperately about surgery.

We are thinking of going for permanent ostomy bag for her, j-pouch seems more riskier with leaks and pouchitis, etc. I hope bag does not have all such problems?)

But I understand there will be complications, even with bag. Are there any common ones? She has very delicate skin, so I am thinking skin rashes for one. What else?

Being Indian, she is missing spicy food and non-vegetarian food like hell. Having to eat tasteless food since last 8 years is another big issue. Will she be able to eat whatever she likes, without causing any health issues? We can't care less about smell and/or gases and other things that may irritate "others". We want to live our life and live it to the full, without caring much about what someone else thinks anymore.

Will she still have to continue any kind of medications, even after successful perm bag surgery?

Please if you can, just bullet point all possible issues that you can think of with a stoma and bag?

Please spare a few mins to answer, we are feeling almost lost on what to do.
We want our life back!!!
Posted 4/9/2010 1:24 PM (GMT 0)

I had surgery Feb 10 and am very happy to say it was right for me.

No Meds..Almost all healed..Eating what I want...No leaks or problems with the fish tank (bag) yet....Walking 2 miles a day..ready to get back in my kayak..going back to work monday.

Posted 4/9/2010 9:24 PM (GMT 0)
I had surgery on Nov.23 and can say I did the right thing.
I can eat whatever I want, when ever I want. I have had only slight issues at the beginning, mostly from my inexperience. I am on Imuran.

-Allie
Posted 4/10/2010 2:45 AM (GMT 0)
IM using my husbands mini laptop and i beendrinking so my typing is suffereing :D
But once she gets her system dow she shouldnt haveany leaks, it tmay take a few tries though
And as for food, for the first couple months you have to be careful becaus e of blockages and such,but after that you can introduce new foods. I notice that spicy foods give me lots of watery output, but i just try to eat them wheni am either at home, or going home right after. regardless of all that its soooo worth it to have your life back, every day something makes me gald i did it like today i took my son and a friend to an alligator park, then came home and got dressed and went to a party (hence the drinking, lol) all without worrying where a bathroom was! how awesoem is that?
Posted 4/11/2010 12:04 AM (GMT 0)
Surgery is a cure for UC, so it is definitely worth it! I suffered with Crohn's for 7 years before having a proctocolectomy (colon and rectum removal) with permanent ileostomy 4 years ago. It was the BEST thing I've ever done!

I am completely healthy now and do not take any medicine. I work full time, exercise regularly, go swimming, eat whatever I want, and feel great! I love spicy food, so she will be able to eat whatever she likes.

Also, they have ostomy products for people with sensitive skin, so that should not be a problem either. You can find them at the web sites of the companies that manufacture them, like Coloplast, Hollister, and Convatec.

Life without disease is living life to the fullest, so I highly recommend that you find a surgeon who will do the surgery. Best of luck to you both, and please keep us posted, because we also have a lot of great tips to help her through the surgery, as well as post surgery.

Take care,

Cecilia (from Florida) cool
Posted 4/12/2010 11:58 PM (GMT 0)
First issue you have......IT'S A POUCH, NOT A BAG.
Smell should not be an issue. When I came home with my new POUCH I called my dog to my lap. She never sniffed me at all. Gas? You will probably have plenty, especially with spicy foods. Whatever pouch you decide on there will be a way to let it out IN PRIVATE. I take no medications. There are lots of medications to help with any stoma irritations. I had the option of a J-pouch. They told me that I would need a toilet 8 or 10 times a day. I WAS ALREADY DOING THAT. I opted for a permanent ileostomy. Never regretted my decision. I can eat anything and all I want whenever I want. Once your wife and you get used to the pouch, you won't look back.

Lastly, YOU WILL GET YOUR LIFE BACK. I delight in passing rest stops on the freeways!!!

Dan
Posted 4/13/2010 1:50 AM (GMT 0)
i just saw how awful that typing was up there, lol.
But i have to add, it was awesome today, driving back from the beach, and our only stops were to get the kid stuff, and one stop for me to pee! YAY, before i would never have even tried that trip.
Posted 3/1/2011 6:55 AM (GMT 0)
If I had it to do over again (I had toxic megacolon) I would stay with the ileostomy--just felt better, fewer health problems, but, as you can see, not everyone feels that way...btw--if you are in US, it is sad to say that not having money for appliances is a consideration. (it was for me)
Posted 3/1/2011 6:56 AM (GMT 0)
I also cannot eat anything i want and have constant pain.....I havent been able to work or have sex since the j pouch. I am considering an ileostomy, but, I have no health insurance...I hope it all works out!
Posted 3/1/2011 12:03 PM (GMT 0)
I've had my ileostomy for 35 years now and there's nothing I can't do except wear a bikini (but this body was never meant for a bikini anyway - one piece bathing costumes are fine for swimming).

There are times when my bag leaks (it's been a 'bag' to me for 35 years and will forever remain a 'bag' lol) but it's usually my fault, ie I haven't taken the extra couple of minutes needed to make sure it's adhering properly or I've slept too soundly through the night and it's leaked while I'm sleeping... or one of the kitties decides a full bag is a nice comfy place to sleep on at night lol - it's a rare occurance but it does happen approx twice a year or so.

She will probably get a few skin problems at first (most new ostomates do) but as she experiments with different products and finds the right routine for her skin care (no ONE system suits everyone so take everyone's advice as to what works for them with a grain of salt - the same with foods that some people will warn you about. Some people have problems with certain foods, most won't!), skin problems soon become a thing of the past.

I eat a lot of gassy foods because I like them. I refuse to stop eating them because they cause gas. I just choose to empty my bag more often. It all depends on what you consider a priority - whether you prefer to eat whatever you like and don't mind the resulting gas or you'd rather limit food intake, sometimes eliminating favourite foods in an effort to reduce gas - it's up to you.

I've been on no UC meds since my surgery :)
Posted 3/1/2011 1:04 PM (GMT 0)
Only 9 weeks for hubby and the transformation is incredible. Instead of being repititious so much of what is said above I totally agree with.

Currently he does have a rash that we are watching and trying to clear up. It is just a question of finding the right manufacturer and appliance for him. The Hollister New Image 2 piece has worked fine but for some reason I think he is having a reaction to the adhesive part not the pectin. So I ordered wafers without the adhesive that should be here tomorrow to try out. Trial and error....I am more worried about it than he is actually. To be out of pain and now he is in control instead of the UC controlling and ruining his life is wonderful actually.

Best of luck to your wife and you as well.
Posted 3/1/2011 3:58 PM (GMT 0)
Had my ileostomy done 19 years ago when I was 20yo and it changed my life so much for the better. Have had problems with flare ups from CD and having a major flare at moment since last November but still would not have changed the ileostomy.

At the moment on a slightly restricted diet to try and reduce output and also Humira, azathioprine, prednisone etc etc but prior to that could eat anything but would avoid mushrooms as I have a stricture and the mushroom got blocked. But thats just me, others eat them without a problem.

Even with high output having the stoma is so much easier than when I had my bowel intact. I still can't get my head around when people say they refuse to have surgery as they can't cope with idea of bag/pouch but struggle on, running to the bathroom dozens of times a day. This gives you your life back, yes there can be problems and things to consider but most are solved by trial and error.
Posted 3/2/2011 5:36 AM (GMT 0)
I had my surgery last year. I suffered severely for 2 yrs before that.. I lost tons of weight then gained it all back from all the prednisone. I still have the moon face from that. I couldnt leave my house for weeks at a time. (a prisoner) It was no life at all. I am sooo happy with my pouch/bag. Most of the time I forget its there and it fills up..funny  I can eat whatever I want. Chewing properly is a must. Drinking plenty of fluids as well.  I just had curried beef, with beef broccoli and cesar salad...mmmm   I wish you both a long and happier life..good luck
Posted 3/2/2011 9:54 PM (GMT 0)
UC wife
I wear a convatec convex one piece. When I first tried it it itched terribly. I now cover the whole wafer area with Frars. No more itch.

Dan
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