Hello All,
In mid January, I started to get sick with symptoms you all will recognize. By the end of the month, I'd been diagnosed with Pan Ulcerative Colitis.
The oral steroids had no effect on my symptoms and I was put into the hospital on 2/8. On 2/14, my bowel perforated and I had emergency surgery. The surgeon counted six perforations before stopping, and found that most of the colon was rotten. I woke up with an illeostomy. Complications and an allergic reaction to an antibiotic kept me in the hospital for just under a month. I came home down over 40lbs, malnourished, etc.
Now, two months after leaving the hospital, I'm feeling much better. I've put 20lbs back on, I'm walking 3 miles a day, I'm back at work, and my surgeon is looking to schedule the creation of my J-Pouch in July, pending a scope on my next visit at the end of this month.
My biggest issue is the comfort of my appliance. My skin is sensitive, and the appliance adhesive is incredibly itchy. It's not leaking, that's been checked and re-checked. It's just a skin under the adhesive portion reacting to the adhesive. I'm also ALWAYS aware of the appliance--it sort of feels like it's pulling on my belly and it drives me nuts. Is there anything that can be done for this? In the grand scheme of things--what with me not being dead--I can live with these issues, but I'd love to find some relief.
I also have some J-Pouch questions (actually a lot, but I'll do more reading before I ask them all.
First is what to expect in terms of output. Is the type and frequency of output from my ostomy any indication of what to expect from the J-Pouch? I don't have any major food issues (gluten, dairy, etc are all fine), and I seem to be tolerating anything I swallow just fine, with an output that runs from very thick paste to porridge 90 percent of the time, and I have to empty the bag about five-six times per day on average.
Second is timing of surgeries. My surgeon seems to be a fairly conservative guy (and he did quite literally save my life, so I'm okay with that), but he's saying 12 weeks between creation of J Pouch and take down. From what I've read, 8 weeks seems to be pretty standard. I can live with the bag, but unlike most of the people I've spoken with about this condition, I didn't suffer for a long time with UC. I pretty much got sick and a month later woke up with an ostomy I wasn't expecting or prepared for, and I don't like living with the bag, and want it out of my life ASAP.
Thanks for taking a look and sharing your insights. 2014 has been quite a journey...
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