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Crohn's or UC, still, three step surgery and reversing. Currently at Step 1

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Ostomies
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Posted 12/19/2012 1:36 PM (GMT 0)
I'm now an ostomate, and they are saying it's just temporary.
I have pancolitis, and still waiting for results. Perhaps it was Crohn's, perhaps Ulcerative Colitis.

The surgeon (who I really trust him), told me he wants make me a j-pouch if it'll be found Ulcerative Colitis, and not if it's Crohn's.
If it's Crohn's, I'll keep my rectum (although, as a pancolitis sufferer, it is really diseased) and will get my reversing surgery as a ileo-rectal anastomosis, trying to cure my rectum using local medications.

Do you think this is a right track? Has anyone had the same kind of surgery with Crohn's?
I'm looking for real life experiences... As I was told a permanent ostomy is not really common, but there are many people who live with it... I'm not so scared about ostomy apart I think as I'm a single 31 y.o. man I won't get anymore the chance to marry, go at beach and perhaps have sex.

Post Edited (asdrubale) : 12/19/2012 6:42:55 AM (GMT-7)

Posted 12/19/2012 2:32 PM (GMT 0)
It's important to know that there is no test that can definitely tell if you have UC. They will do biopsies on your colon, and if they find granulatomas, then you definitely have Crohn's, but if they don't find them, you might still have Crohn's. There are a lot of folks kind of in the middle.... I had a rare skin condition that biopsied as Crohn's, but then when my colon was taken out, it showed no evidence of granulatomas (my gi was very surprised). So, it is a bit of a crapshoot, as one major cause of failed jpouches is that it turns out that the person really had Crohn's....

No matter what you decide regarding surgery, however, you need to know that you can go to the beach with an ostomy, you can get married, and you can have sex. Most or many of us on this list go to the beach and have sex, and many are married, including some who got married after surgery. Really all it does is change where your poop comes out. There's a learning curve, and a lot of people have body image issues with it, but you absolutely can have a very full life with an ostomy.

You might want to look up the stealth belt -- you can see pictures of a guy at the beach wearing it, doesn't look weird at all.

As for my own experience, I opted for the permanent ileo because I didn't want to have 3 surgeries, and my gi thought if I got a j pouch it was more likely to fail. I have had my share of complications, but I don't regret surgery one bit -- it gave me my life back. Often when I go to the bathroom and empty the bag when I'm at a show or a party or at work I think about how this bag is what made it possible to be wherever I am that moment.

But these are hard decisions and hard recoveries. Feel free to ask more questions, and welcome.
Posted 12/19/2012 6:17 PM (GMT 0)
Thanks.
I began quite well with my stoma; I read lot of infos in the last year where I began to talk with the surgeon, and already knew that most of the time people well adapt to the new condition and body image.
Also, I think that with a bit of willpower I can do it, but, still, being in the condition it could be temporary and not definitive (but, in the meanwhile, knowing my rectum is diseased, and could progress in the disease, in the future, so that I will be obliged to get the full permanent ostomy) it's, perhaps, a source of anxiety, as you still don't know your future.

I don't know if it's right, but, since the first time I used my stoma, I considered it permanent, I want to get well used to it because, if it'll be the case, I want to be ready to live with it forever.

But the start is not so encouraging; I find my movements limited, as the adhesive "pull" my skin.
I don't know if I'm cutting the skin barrier too small and perhaps I'm "harming" my stoma, although it's easy to pull it out (but it still bleeds a bit when I wash it), and so I really don't know if that is a temporary issue or if I am still technical unaware of something (I wash the skin, dry it, shave it, and so on); I also find the that the second day is a bit itching.

Finally, my abdomen is short and so I don't think I have the right amount of space to keep my boxer up the stoma, although I didn't try it. (Where is that picture?)

Yes, living should be nice with an ostomy, but I'm afraid I'm not very suitable with it.
Posted 12/19/2012 9:51 PM (GMT 0)
Here's the picture http://www.stealthbelt.com/ . The belt is higher up than a boxer, but it doesn't scream medical device. A lot of men also just wear tank tops at the beach. For swimming, I got a pair of women's running shorts that have underwear built in. They cover the top of my bag well (I have a tankini top to go w/them)

Having your stoma bleed a little is no big deal. The tissue that it's made out of bleeds really easily -- it's the same tissue as your cheeks. Bleeding a lot is a different story.

Do you have a good stoma nurse (WOCN)? It's good to get someone to look at what you're doing and help adjust. I was cutting my wafer too close at the beginning. The hole should be about 1/8 of an inch bigger than your stoma all around, and you should measure every week or so at the beginning, as your stoma will shrink. It's also possible that your stoma is not round, so it's good to measure from the top/bottom and left/right to check (with the half circles, not the circles).

What are you using to wash your skin? It should be just water and maybe a mild soap with no oils or fragrance.

I'm not sure what you mean saying that the adhesives "pull" the skin. Do you mean it hurts when you move? Or that your skin is getting irritated?

Emotionally, I think it's smart to think of the bag as permanent. Just from reading this forum, it seems to me that often the people who know the bag is temporary have the worst time with it.... sometimes they just count the days, rather than figuring out how to make things work.

I don't think the start is encouraging for any of us.... it does take a while to find things that work for you, so please try to be patient.
Posted 12/19/2012 10:26 PM (GMT 0)
Just a question: today I was changing my skin barrier, and noticed that where there's the stoma, the abdomen is much swollen. Is it normal? Perhaps the poo is not exiting as expected?
It's not tender. Just I noticed swollen (asymmetric). And will become normal after reverting?

BTW: I don't like tanks at beach. At beach no men dress tanks, in my country...

In answering you, I think I'm cutting my skin barrier too tight, so that I'm irritating the stoma, or perhaps I can't move well, but I'm not sure.

I'm trying to cut it the smaller possible in order to not let the poo touch the skin, but perhaps it's too much until you can't move well if the inner part of the stoma is always touched by the skin barrier?

Post Edited (asdrubale) : 12/19/2012 3:34:59 PM (GMT-7)

Posted 12/19/2012 11:09 PM (GMT 0)
Swelling in the skin is normal -- it might or might not go down, depending.... I am still a bit asymmetrical. If food is not getting through, it'll feel very hard near your stoma and you'll start getting nauseous and feeling sick. That doesn't sound like what's going on for you.... but there's going to be swelling just from the surgery.

Do you mean that you're cutting the wafer too tight? Do you use a skin barrier like an eakin seal or adapt ring? These are soft sticky moldable rings that you can put under the wafer, and it will go right up against your stoma -- it even "turtlenecks," so it kind of goes up and hugs the stoma some. It protects the skin. Your stoma will get a bit wider and then narrower as it pushes food out, so you want a bit of space there.... but the skin barrier ring can protect that skin.

Where are you from, if you don't mind saying?
Posted 12/19/2012 11:38 PM (GMT 0)
I'm from Italy;
however, I'll check the situation in 2 days when I'll change the skin barrier if there are problems and perhaps will ask to my nurse about.
Thanks :)
Posted 12/25/2012 12:27 PM (GMT 0)
Sorry I dropped this conversation, have had a virus the last few days. How are you doing now?

We have people from Germany, England, Australia, Canada, the US and a few other places on this list.... I think you're the first I know of from Italy. Did you look at the pic of the stealth belt? Would something like that work at a beach in Italy?

Have you looked for an ostomy association in Italy? Here is a website for the European ostomy association, the vice president listed is from Italy: http://www.ostomyinternational.org/European.htm . There are other men in Italy with ostomies, and maybe some of them would have some beach tips to share....
Posted 12/26/2012 6:12 AM (GMT 0)
I am confused. I also had ulcerative pancolitis but did not have a diseased rectum. None of the eight doctors who worked on me ever mentioned the possibility of a diseased rectum. Has this been confirmed? I was told pancolitis only refers to the whole colon not the rectum.

I have a j-pouch now but if I have to go back to an ostomy I will not be upset. There are many advantages to having an ostomy especially when rock climbing, kayaking or mountain climbing.

Locally we have a company called Ostomy Secrets that makes a swim wrap that goes around the stoma and under your suit. I wore the wrap for a few months just for the extra support. It turned out I did not need it. You can buy wraps that are same color as your suit and low cut. Unless you wear a super low cut suit (below hip level), you should be ok.

There are similar companies in the UK that make brilliant ostomy men's swimsuits. Check out the London Ostomy parade on You tube and you will see some hysterical as well as stylish ostomy fashion statements. Due to the styles worn in Italy, you will have to buy an ostomy suit in Europe. The American ones would really stand out on an Italian beach.

It is better to cut the barrier a little loose and fill in the empty space with stomadhesive paste or powder. The paste or powder will protect your skin from leakage burning.

Good luck!
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