Hello one and all
I am a new member of this unique community, having had my iliostomy on January 22, 2004. I parted ways with my colon exactly 44 years and 4 months from the day I started life with it. I don't know if there is any significance to those numbers, just seems strange that it came out that way. (no pun intended)
What can I say, its been a strange journy (but a quick one) to get to my present position. In february of 2002 I decided to end a 26 year relationship with cigarettes. This on the face of it was a good thing, seeing how I was paying so much a day for a habit that was going to kill me some day and take me away from my wife and son before I wanted to go. But as my patches got smaller, my bowels got worse. It was not till May and an endoscopy that the doctors figured out that the blood I was passing was Ulcerative Colitis and not Hemeroids.
I then started on the Asacol gig (they did nothing) and got to know my good friend Prednisone (ya right, never been so fat in my life). The prednisone took care of the symptoms, but the side effects were just a little more than me and my GI wanted to deal with. We tried antibiotics, stool hardners and about 10 other things that sounded just about short of quackery that did not work either. Last November, after my second transfusion in a month, we setteld on 6-mp. I found out that it was the same chemo they used on lukemia patients. I had read that some people stayed on this stuff for years with no problem, and I did seem to be improving and looked forward to maybe going back to a pretty normal life. Then my Hemo counts started dropping again as did my white counts, and my liver enzymes were going absolutly flukey. My GI decided to do another endoscopy and discoverd that there had been no improvement at all since my first 'scopy. Thats when I decided (with some urging from the GI) that surgory was the way I had to go.
Because my UC was Pan-colonic, the only option I had was a complete Colectomy. Re-connection or re-routing was not an opption due to the likley hood that re-infection would occure. ( I wish this place had spell check, and Grammer-check) By Keeping the colon, I was exposing myself to the very real probability of cancer later on, and there really were no other drug options.
The surgery went well, and I felt allright about the decision, till about three or four days post-op when I had my Panic attack. I have allways been what most would call a type B personality, so I did not know what was going on till 5 hours into the hot flashes followed by cold flashes followed by the extreme undefined fear and then disorientation. When I started vomiting (Not fun with 25 staples in my belly) I thought I was going through a bout of dehidration. As I was getting cleaned up I mentioned to my nurse what I had been feeling all afternoon and he replied that it sounded more like anxiety. The Xanex worked great.
I had some difficulty at first, learning the mechanics of the proper operation/care and feeding of a pouch. Pre-op, I had looked on the net and surfed out the subject of ostomies. I found a site that delt with ostomie humor, and read a submission from a lady talking about how she never had to worry about sitting on a public toilet seat again, and about how she got funny looks from a lady whose daughter had blurted out that "That Ladie's feet are facing the wrong way". While I was in the hospital, they required measurement of output, So i was standing and dumping into a graduted pitcher. It was not till I was out of the hospital for a week that I had the ephinay that I could avoid all the disgusting mess and abhorant splashing by just simply sitting down and opening the bag between my legs. That was when I realized that the lady on the web site was talking about a Urostomy, and I guess the Ostomy Training Nurse took it for granted that this was so obvious she didn't have to mention it. It seems almost funny now, but I was really hating life for a while there.
It is so easy to say that this decision is the right decision to make or that decision is the right decision to make. The hard part is learning the reality of and living the result of that decision. I had no Idea what living with the bag was like, and I am still learning. I know the reasons why I had to do this were good reasons and the right reasons. but there are times when I hate the bag, when I hate the stoma, when I hate the mess, when I hate life and what it has done to me. There are times when I cry. But dangit, life is hard.
I Tell my eight year old son "No, you can't have that", and he exclaims "Thats not fair." I return just as quickly "Life isn't fair"
Now I know what that can mean.
Sorry if this rant sounds so negative, but this is all still so new to me. There is so much more I have to learn. So much more that I don't know I need to know. That is why I am here now composing this little introduction to all of you. I am sure my outlook will improve and that is why I am looking forward to hearing from you all and learning from you all.