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Crohn's Disease Forum » Surgery » Stoma Subforum » Nervous-about-ileostomy-Help


03-04-2013, 02:06 PM   #1
crohnswifey
 
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Nervous-about-ileostomy-Help

Hi everybody! I am actually writing this in behalf of my husband, he has had CD for about 6 years. He has been on every medication possible and nothing seems to work. He was on remicade and it was helping but his rectum area never seems to get better. He was diagnosed with peri-anal disease and developed several fistulas and now has a ceton. His rectum can't seem to response to the medication or any other treatment so the colo-rectal surgeon is considering having an iliesotomy. This is consider the last resort for him to have a normal life. This is suppose to be only temporary to let his rectum area heal enough to be reconnected.

Any advice? if you have one i would love to hear from you and how has it helped you? for better, worse? and complications? how long have you had it? and regrets?

Thanks so much and hope to hear from you guys!
03-04-2013, 03:27 PM   #2
BlondeBunnie
 
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Hello, I had an ileostomy for 13 weeks. I had my colon and rectum removed I had one so my inside clould heal. It worked but it was difficult for me. The seals won't stay on they would fall off in the middle of the night making a big mess. It got to a point I was using duck-tape to make them stay. And the supplies are expensive.
Wishing the best to you and your husband.
03-04-2013, 07:14 PM   #3
2thFairy
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I have had an ileostomy for only a year, but I don't regret it at all. I have had my colon removed because of ulcerative colitis. Having an ileostomy was such a great relief from all of the misery of being glued to the toilet, butt burn, never wanting to leave the house for fear of having an accident, food restrictions, etc. Having a stoma brings its own challenges, but life with one is so much better for me than before.

There is a mixed bag of positive and negative experiences on this forum, so definitely check out the rest of this Stoma Subforum for other stories and advice. As BlondeBunnie said, yes the supplies are expensive, but most insurance companies cover the cost with little hassle.

BlondeBunnie--I'm sorry you didn't find us when you had your ileostomy. We could have helped you find a solution for your difficulties with leaks. There are so many different manufacturers of supplies and so many tricks to prevent leaks.
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03-04-2013, 07:15 PM   #4
2thFairy
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p.s. Welcome to the forum, crohnswifey and BlondeBunnie!
03-04-2013, 07:31 PM   #5
Sue-2009
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I had one temp. It was hard to deal with. But he will feel so much better. He won't be sorry!
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03-04-2013, 07:51 PM   #6
annawato
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Ileostomys can be difficult in the beginning but through trial and error it is usually possible to find the right products and solutions that work for you. I think most people are thankful for them in that they help so much with the disease by easing symptoms or as in my case keeping me out of hospital. Everyones experiences and problems with them differ but when all else has failed they do help. Its amazing how quickly you can adjust to life with an ileostomy or stoma. As 2thfairy said browse some of the other threads in the stoma sub forum to learn more about the benefits and problems, keeping in mind that most people come on here because they have a problem so life with a stoma is not as negative as a lot of the posts may seem.
Complications I have had are a high output which means I have to be careful about not getting dehydrated and keeping my electrolytes in balance. At first Mine was very prone to leaks and skin irritation but, touchwood, that seems to have settled down now. i'm am happy having mine because before it I spent more time in hospital than out.
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Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
03-04-2013, 08:39 PM   #7
Jaano711
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Hi Crohns Wifey

I have a similar history to your husband. Only I've had crohns for 21years with no real remission and failing all biological except for humira. Unfortunately the humira had no effect on the peri-anal disease. I had a panprocectomy in August last year. This is where they remove rectum and anus and form an Stoma. I technically have an colostomy but due to multiple resections I only have 5 cm of colon so the colostomy acts as an ilieostomy with liquid and high output.

I have to say that life is easier now than it was a year ago. Not saying it has been easy but i never thought it would be.

Good luck.
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03-04-2013, 09:07 PM   #8
crohnswifey
 
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Thanks guys for all the great tips and advice. Seeing my husband go threw the struggle of each day wondering if he is going to feel better or scared of every bowel movement is hard, i admire all of you and wish you the best!!! So ileostomy is set for friday i hope everything goes well. Wish us luck!! And thanks again.
03-04-2013, 09:56 PM   #9
Nyx
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I've had my colostomy for just over 3 years now, and mine is permanent. I used to have very bad disease in my anus and rectum and I just dreaded going to the bathroom as the pain was horrendous! I wound up perforating my colon, and my stoma was born. I don't regret it for one minute. My quality of life has gone up at least 100x. Don't get me wrong, surgery was hard, and recovery was long, but again, worth it in the end. Make sure you ask the surgeon if there's anything you can do about blood clots during surgery - I developed 2 in my lungs, but not sure if there were any preventative measures that could have been taken (I only mention this because I just read in another thread the we Crohnies are more likely to develop clots than healthy people).

Good luck with the surgery...I'm sure he won't regret it.
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Crohn's Diagnosis: May 2006
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Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

03-05-2013, 03:38 AM   #10
annawato
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All the best to you and your husband.
anna
03-05-2013, 06:39 AM   #11
Jaano711
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Don't forget we are always here if you or your hubby need support or just a sounding board. Please let us know how he gets on.

Thinking of you both

Janette
03-05-2013, 07:32 AM   #12
bigtruck
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I've had two illeostomys over the years and now have a loop colostomy, like your husband my disease is also in the tail end, in my opinion he should give it a go if nothing else is working he will feel so much better. Good luck and keep us posted and if he wants to ask me any questions fire away.
03-05-2013, 01:14 PM   #13
2thFairy
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Let us know how your husband gets on with surgery on Friday. Best wishes to you both!
03-07-2013, 06:53 AM   #14
mflaum
 
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Hi CW, I just went through this surgery 4 weeks ago. It's been a challenge, but worth the battle. Similar to others here, My rectum was removed and given a colostomy, and in 2 weeks, they will remove my anus and remaining fistulas.

I can honestly say that days after the surgery, the pain in my fistulas were gone. I can sit on my duff again now.

Getting used to my bag has been tough mentally. Mine is permanent, so thinking about doing this for the next 50 years is sometimes daunting. But my family is my driving force and this has worked so far.

Hopefully the hospital can give you a few different brands of ostomy supplies to try. Finding a comfortable and strong ring is very important. For me, Holister has one with an adhesive ring that is much stronger than the ones with tape. Changing an exploded bag stinks.

It will take time to recuperate after the surgery. It's been a month for me and I think I need at least 1 or 2 more to fully heal and get used to long with a bag. I've been battling gas as I've been getting used to eating normal foods again.
03-07-2013, 01:57 PM   #15
crohnswifey
 
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Thanks again everybody for the great responses, each and ever one of them are greatly appreciated.

Nyx-thanks about the advice regarding the blood clots, i will make sure we ask that. I do remember though since he has been in the hospital a few times there were giving him a shot for the blood clots (that he refused a few times) or would either make him walk around. Good to know, thanks again!

mflaum-Good luck and stay strong and thanks for the advice. I'm sure if you able to sit on you bottom again you are heading towards the right path, and that's great! My husband has also finding it mentally hard, but im sure with your family support you will be good.

Thanks again everybody!!! i feel so much better now, knowing that i can come here and receive all sorts of advice
03-11-2013, 05:31 PM   #16
2thFairy
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How did everything go on Friday? Thinking of you and your husband!
03-11-2013, 05:56 PM   #17
BoyMama2000
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Yes, we are thinking of you and hope things are going well.
03-12-2013, 08:34 AM   #18
Susan2
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I hope that everything went well on Friday and that your husband is recovering from the operation and learning to deal with his new stoma.

I've had my stoma for 13 years now and, as the others have said, there have been ups and downs, but the positives definitely outweigh the negatives.

Please feel free to ask any questions - nothing is off limits here.
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
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