Hi all. This is my first time to this site. So far, I am really liking it. Thank you. I got on here due to the fact that I am 2 weeks post surgery with an ileostomy. My mood is not good. As I type, I'm trying to keep from crying.
A little background: At the age of 17, I was diagnosed with UC. My entire senior year was spent in and out of the hospital. I was on high doses of steroids and had, I think, every side effect possible. Despite all the drugs and diet changes, I never did go into remission. Before all this, I felt like I was on top of the world. I was junior homecoming duchess, did a couple of commercials, company leader on my dance team, honor student, etc. The steroids really messed me up. Ever since, I have had major confidence issues. Soon after I turned 18, I had the 2 part j-pouch surgery. I have always said that having the ostomy bag in between my surgeries was the worst couple months of my life. Of course, it didn't help that my midline incision had become infected during the hospitalization of my first surgery. The surgeon ended up opening the wound and my mom did sterile wet to dry dressings until my next surgery. I had lots of problems with my ostomy due to my skin being sensitive to all the tapes/adhesives. During my second surgery, they actually had to do a slight tummy tuck where the stoma had been because the skin was so bad.
Now to today...
My biggest fear over these last 17 years was to end up with a permanent ileostomy and, now, here I am with one. I know that it is so vain to be this upset over something that has saved my life, literally, but I am having an extremely difficult time knowing that I have to live like this forever. I am trying to stay positive; especially for my husband, but it is so hard right now.
To back up a little: Ever since my j-pouch surgery, I have had problems with diarrhea, nutrition, hydration, night-time stool incontinence. Then starting several years ago, my symptoms slowly got worse. At first, the docs thought it was due to my endometriosis. I had 2 surgeries related to this in which the second surgery, my right ovary had to be removed. I tried Humira. After a year, it quit working. Then we tried Remicade. That seemed to help until I started to have debilitating joint pain all over my body. I also ended up with Blastomycosis due to my weakened immune system. Remicade was stopped last fall.
These last 6 months have been the hardest. I had become a regular in the ER followed by an admission every time. It was then discovered that just above my pouch, my small intestine was scarring closed causing dilation above that. A fistula also made it's appearance. Every time I ate something even somewhat solid, a blockage would occur. Surgery then became the only option. My surgery was scheduled for August 21. The surgeon would go in and do whatever needed to be done knowing that if there was any way to save my pouch, they would. I had a good surgeon lined up. Unfortunately, he could not get me in any earlier than late August.
Well, this last hospitalization changed everything. We could not wait until August. In fact, the same day I was admitted, I had surgery. The surgeon who did the surgery I had met once before. He had been very polite. After surgery, not so much, but that's another long story. So, here I am now. My j-pouch had to be removed, part of my small intestine removed, ileostomy created, and anus stitched closed. I had no idea they did that last part. The surgeon did not close my midline incision all the way. He was concerned about infection because I am not in the best nutritional health and also because of the Blasto. I have stitches on the under layer, but the top layer is open. It starts just below my chest to just below the pubic line. I have a wound vac in place and a home health nurse who comes every other day to change it. I then have my stoma and a drain.
I didn't mean for this to be so long. :boring:
I guess I just really needed to get all that off my chest.
My husband and I have been through numerous challenging situations (infertility, a failed adoption after having cared for our son for 10 days, numerous surgeries on the both of us) and have held strong through all of them. I know deep down in my heart, we will overcome this too. I do look forward to not being so dependent on a bathroom everywhere we go. I also know God won't give me more than I can handle.
A little background: At the age of 17, I was diagnosed with UC. My entire senior year was spent in and out of the hospital. I was on high doses of steroids and had, I think, every side effect possible. Despite all the drugs and diet changes, I never did go into remission. Before all this, I felt like I was on top of the world. I was junior homecoming duchess, did a couple of commercials, company leader on my dance team, honor student, etc. The steroids really messed me up. Ever since, I have had major confidence issues. Soon after I turned 18, I had the 2 part j-pouch surgery. I have always said that having the ostomy bag in between my surgeries was the worst couple months of my life. Of course, it didn't help that my midline incision had become infected during the hospitalization of my first surgery. The surgeon ended up opening the wound and my mom did sterile wet to dry dressings until my next surgery. I had lots of problems with my ostomy due to my skin being sensitive to all the tapes/adhesives. During my second surgery, they actually had to do a slight tummy tuck where the stoma had been because the skin was so bad.
Now to today...
My biggest fear over these last 17 years was to end up with a permanent ileostomy and, now, here I am with one. I know that it is so vain to be this upset over something that has saved my life, literally, but I am having an extremely difficult time knowing that I have to live like this forever. I am trying to stay positive; especially for my husband, but it is so hard right now.
To back up a little: Ever since my j-pouch surgery, I have had problems with diarrhea, nutrition, hydration, night-time stool incontinence. Then starting several years ago, my symptoms slowly got worse. At first, the docs thought it was due to my endometriosis. I had 2 surgeries related to this in which the second surgery, my right ovary had to be removed. I tried Humira. After a year, it quit working. Then we tried Remicade. That seemed to help until I started to have debilitating joint pain all over my body. I also ended up with Blastomycosis due to my weakened immune system. Remicade was stopped last fall.
These last 6 months have been the hardest. I had become a regular in the ER followed by an admission every time. It was then discovered that just above my pouch, my small intestine was scarring closed causing dilation above that. A fistula also made it's appearance. Every time I ate something even somewhat solid, a blockage would occur. Surgery then became the only option. My surgery was scheduled for August 21. The surgeon would go in and do whatever needed to be done knowing that if there was any way to save my pouch, they would. I had a good surgeon lined up. Unfortunately, he could not get me in any earlier than late August.
Well, this last hospitalization changed everything. We could not wait until August. In fact, the same day I was admitted, I had surgery. The surgeon who did the surgery I had met once before. He had been very polite. After surgery, not so much, but that's another long story. So, here I am now. My j-pouch had to be removed, part of my small intestine removed, ileostomy created, and anus stitched closed. I had no idea they did that last part. The surgeon did not close my midline incision all the way. He was concerned about infection because I am not in the best nutritional health and also because of the Blasto. I have stitches on the under layer, but the top layer is open. It starts just below my chest to just below the pubic line. I have a wound vac in place and a home health nurse who comes every other day to change it. I then have my stoma and a drain.
I didn't mean for this to be so long. :boring:
I guess I just really needed to get all that off my chest.
My husband and I have been through numerous challenging situations (infertility, a failed adoption after having cared for our son for 10 days, numerous surgeries on the both of us) and have held strong through all of them. I know deep down in my heart, we will overcome this too. I do look forward to not being so dependent on a bathroom everywhere we go. I also know God won't give me more than I can handle.
