Life with stomabag

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Jan 30, 2011
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My son has been struggling with Crohn's for so long and tried every medication. He is going to be 18 soon and feels he's missing out on life. We have talked about surgery,but don't know anybody who has done it .I would really appreciate if anybody could let me know if surgery helps and if quality of life can improve. I'm talking about stoma, he has already had a resection.
 
You also might want to try the section called Parents of Kids with ibd. I am going to tag Maya 142, my little penguin
 
I don't think we have parents on there who have kids who stomas, currently. There will be many more adults who have them.
 
Hello,

What sad to hear about your son. I cannot give you advice since I'm not diagnosed yet nor do I have a stoma. But it must be hard from him, does he have an account on this forum?
 
I would read up on it, there is quite a bit of information here on these forums. As mentioned many who have a stoma are older. I was middle aged when I had no choice but to get one as I had a life threatening infection in my rectal area. Its been almost 20 years now, it was supposed to be temporary but ended up being permanent. I am retired now. There is life living with a stoma, I would try to avoid getting one unless the situation warrants the surgery.
 
Thank you all. He is on TPN now and bowelrest. We also were able to up the dose on his Remicade and this has helped. Just wondering how long this will last. It is hard to stay positive when we have been let down so many times before. Now, I'm trying to stay more focused and realistic. I was hoping to get advise from people with this surgery,who have "real"stories to tell. Will life change for the better? Surgery is always something to avoid,but at some point there might not be another option.
 
I have had a temporary one for just under half a year. While I wasn't looking forward to it, I was actually in many ways a little disappointed when the reversal happened.

For me, pros were significant. No more straining to go, very quick when I had to empty the bag, no more worrying about getting to washrooms. No more pain.

Cons: mine was done on an emergency basis, so it was not well situated for long term use. It was just above the belt line, so I had to get used to track pants. Hockey and golf with its location were both no-gos. I know there are special restraints that can be had for those with more active life styles.

My stoma was before I started remicade. It took about a year to get my dosing correct (it included adding imuran), but it definitely works. I was up to a surgery every two years with the occasional dilatation thrown in before, and I have not had to go back for anything other than a very minor stretch that was done during a follow up colonoscopy.

I would imagine that he would like feel quite self-conscious about the bag. Kind of difficult to hide it at a day on the beach. However, it could also help him focus more on relationships that are more genuine. That is actually a pretty big upside in the current world. Tough to sell that one though. As a 20 year old, I let my crohn's run my social life. It is about the only regret that I genuinely have during my time with this ever-so wonderful disease.
 
I had ileostomy for 1 1/2 years -Ileostomy is a stoma constructed by bringing the end or loop of small intestine out onto the surface. My rectum fistula was infected and drain setons and antibiotics no longer worked. At the same time I started Stelara injections and take 100 mg Imuran. All my problems in the rectum went away and fistula healed. I had a reversal Feb 20 of this year. The surgery was 90 min and I was in a hospital for 5 days. Stoma nurse showed me the basics of changing the bag in the hospital, then a home visiting nurse worked with me for about one week at home. It takes a while to find what type of bag and all the parts that go with it to find out what worked for me. There is soo many types of bags and styles.My problem was the heat ( I live in Fl)- tape would not stick and I had few issues with my skin until i found what worked. For some people having stoma saved their life's, it is certainly helped me to heal. Please let me know if you have any specific questions.
 
I had ileostomy for 1 1/2 years -Ileostomy is a stoma constructed by bringing the end or loop of small intestine out onto the surface. My rectum fistula was infected and drain setons and antibiotics no longer worked. At the same time I started Stelara injections and take 100 mg Imuran. All my problems in the rectum went away and fistula healed. I had a reversal Feb 20 of this year. The surgery was 90 min and I was in a hospital for 5 days. Stoma nurse showed me the basics of changing the bag in the hospital, then a home visiting nurse worked with me for about one week at home. It takes a while to find what type of bag and all the parts that go with it to find out what worked for me. There is soo many types of bags and styles.My problem was the heat ( I live in Fl)- tape would not stick and I had few issues with my skin until i found what worked. For some people having stoma saved their life's, it is certainly helped me to heal. Please let me know if you have any specific questions.



I was 18 when I had an ostomy because of bad fistulas. I didn’t handle it very well. It worked but I hated the bag. I was really self conscious and thought it would be for the rest of my life. I was thrilled when they reversed it. If the dr is suggesting it, I’d go for it
 
I had a temp ileostomy in Jan 16 and made it permanent last August for severe perianal disease that didn't respond to meds. I was lot a lot older than Max when I made the decision but it sounds like he has already had a long, hard fight and needs some time to enjoy being young. Even though I still have some issues, my stoma has freed me from constantly worrying about the loo - where I can find one, fearing others hearing/smelling what one of my friends called "Satan's butt", how much time I have to spend there etc. etc. When I was first diagnosed at 20, I thought that I'd rather die than have a stoma but now I wouldn't want to go back. I would suggest that Max do a lot of reading about the procedure, how other young people cope with bag life, and have a positive view of what he is going to do. I also found my stomal therapists a great source of support and information - no question has ever been too dumb or weird. Wishing you all the best & happy to answer any questions.
 

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