New in town with questions

Hello. My name is Chad and I was diagnosed with perianal crohn's back in the summer of 2003. I had my first ostomy surgery, loop ileostomy, in Feb. 2005 at 14. Feb 2006, I had a colostomy and they removed my entire rectum. 2007, I saw one of the world's leading experts on Crohn's, Dr. Stephen Hanauer and had a proctocolectomy (learned that term today). After the proctocolectomy, I have been disease free since the colon was the only affected area. I have had another stoma site move because my ileum was nicked on the LAST stitch, found that 9 months later.

Okay now that you have my ostomy history, lets begin. I am a 22 year old college student. I am engaged, as of a month ago. I work at Babies'R'Us and love it. However, I feel like as of late, my life is being controlled by my ostomy. I almost feel like I am on the verge of depression because of it. I am just so sick and tired of avoiding activities because I know that it could come off at any moment. I should currently be in class, but my ostomy strikes again! I just wish I could go a month without waking up covered in my own stool.

With my Crohn's, I can eat/drink anything and not have any issues. My ostomy however, I have to watch the amount of sugar and things like that because if I get too loose, my bag will come off.

Recently, I have heard talk of an "internal ostomy pouch where all you have to do is just drain it out." I started to research things today while I am letting my site air out and realized that the "internal ostomy surgery" is a J-pouch. I always thought a J-pouch was only UC patients and was only a temporary surgery because they go back through and reattach it later. Can you have a J-pouch made and then just not reattached? Its not like I have a rectum to reattach it to.

Welcome Chad! I hope you find this board supportive and knowledgeable. We are a fantastic group here, and as others chime in, hopefully it will help you in every way possible!

Crohn's patients usually have resections or a protocolectomy, as you. As Trigirl said, because of it's re occurrence. The information your coming across is actually 2 different things. An 'internal ostomy pouch' is aka BCIR/K Pouch. Not many people opt for this because of it's cons.....pouch perforations and valve replacement. But some stories I've come across, it's liberating. The J Pouch, which is a manipulation of the ileum to be like the rectum, is what is normally performed and then the stomal reversal consists of connecting the Jpouch to the anus.

I've had my ileostomy for over 2 years now. I'm usually happy and content, but I have my days. Sometimes I catch myself, referring to myself as 'handicapped' or 'disfigured'. I quickly try to get over it, because I know my potential and I don't want to be defined as these things. When I have a leak, it is nerve racking and sometimes I break down. But I tell myself I'm entitled to these moments and it's OK, we can't be strong all the time after what we've had to endure. This support group has enabled me comfort because I know I'm not alone. With this comfort, I put myself together again and continue on with my day.

Your being limited is what's causing your depression, lets help that! Your an active 22 year old in school and engaged, you shouldn't be controlled by this. Your diet and your appliance is what's causing these leaks. I use convex wafers, along with an Eakin seal and an ostomy belt. I can get 7-10 days wear time and have no food restrictions. If you could elaborate on your appliance products and usage, I could help, as could others here.

The world is at your feet, please don't let this steer you otherwise!

I agree that you need to post the products/appliances you are using and your application process.  You should not be "controlled" by your ostomy this far out post-surgery and should be getting 3-4 worry-free days, at the very least.   

Some men need to shave the area, moisturizing soaps and adhesive removers leave residue, powders can hinder application if not done properly.

Dial soap to wash off adhesive remover residue, barrier spray/wipes [not recommended by some], a whole Eakin Seal, Convatec Convex Moldable, heat & pressure have all contributed my my "bomb-proof" set-up for getting 7-10 days wear.    Prior to what I am now doing, I only got 2-hours to 2-days wear.

Coloplast does not stick well on me, but many others on this site have excellent results with Coloplast.  Hollister worked pretty well, but I fell in love with the moldable feature of Convatec.    All of the companies are very generous and prompt with samples for free, as they want our business, so give them a call.  We are all different in what sticks well and what our skin does and does not like.

Here is a recent thread that has some helpful info from others and my heat & pressure step along with another step I have found to be useful in getting even & steady pressure around the stoma.

https://www.healingwell.com/community/default.aspx?f=33&m=2485519

Some have a minimal application process and get good results, others may have to do a few more steps for longer wear time.