Posted 1/27/2012 7:00 AM (GMT -6)
Good evening Ostomie forum!
Let me just start by saying this forum has been very helpful in calming my concerns during my surgeries. I haven't posted anything, but with all the things I read I hope maybe I can return the favor and maybe I could help someone by writing a little piece.
My names Marek, I'm 25 years old and have been fighting with UC since I was 14. For many years I felt ashamed of my condition, and tried to hide from it. It made life difficult at school, and at many jobs that I've had over the past ten years.
Kids used to block bathroom stalls and throw things at me when I would use the washrooms at school, when I got older I had bosses that would put me down for pooping so much.
I was 15 the first time I went to a gastrointestinal specialist. This doctor was fairly certain I have UC. He attempted two colonoscopies on me, both with out sedation. Both times failed. I was 16 and taking 4 asacol 4 times a day for two years. Asacol did nothing for me. The stuff passed right through me whole, and I still was going to the washroom a lot. My GI did't change my perscription
I told my GI I wouldn't go through another colonoscopy unless I was sedated. Gladly he said he could not do this procedure so he referred me to another GI who was known to sedate people for scopes.
I was 17 at this point, my parents sadly did not help me at all with this illness. They thought I just didn't like going to school and that I was faking this illness. So finally I have an appointment with my new GI she listened to me about the asacol and my bowels not even breaking the casing. So she put me on pentasa, same dosage. 4 pentasa 4 times a day. She completed my colonoscopy successfully and told me they found irregular mutating cells in the biopsies. My GI discussed these results with me a week or so after, she told me at that point I should get my colon removed, and that occasionally it is possible to reattach the small intestine so you can poop normally. She also said that being I'm so young she would refer me to other GIs for second opinions.
Needless to say this scared me, I felt alone, I felt I couldn't talk to anyone about my sickness because I felt ashamed. I know that's silly now, and I wish I was stronger then! I missed my next appointment with the GI, didn't reschedule... I was in denial. This denial lasted about six years or so, I was on pentasa still however it never did anything for me. I tried avoiding foods that made me feel sick but I was in and out of the hospital due to dehydration probably 8-9 times in that six years. I was traveling, trying to enjoy life and things just kept getting worse. Finally I moved back home and continued to struggle with the disease feeling like I was stuck like this.
I was 23 at this point and a lot was going on in my life. I finally had a great job, had a great girl, and she was pregnant with my baby! I didn't want to feel the way I was anymore. I was going to be a dad! I worked hard at my job, and luckily got a permanent position. That's when my life started changing for the better, mostly because I had good benefits and could actually afford medication. I got really sick again, my boss told me to go to a specific hospital, as she knew there were really good GI's there. So I did exactly that, I was put under the care of a wonderful GI, he seemed to be much more knowledgeable than my previous GI's. He admitted me to hospital, and gave me a colonoscopy during that visit. Turns out that the irregualr mutating cells were not cancerous. But I had a lot of necrotic tissue in my colon, and it turns out I have primary sclerosing cholongitis.
He gave me four options: 1) clinical study where I could just be getting a placebo, which I declined. Like I said I'm going to be a dad I can't take that risk. 2) immuran. 3)remicade or 4) surgery.
He sent me to the surgeon even though this was not my first option. He wanted me to be informed, so I met the wonderful surgeon. He talked to me about it, and put things into perspective for me.
So i went back to the GI and I agreed to try immuran as I was not keen on being cut open. He had me on prednisone since I first saw him at the hospital, which really helped but gave me bad insomnia and terrible nightmares. He told me immuran can take about three months to start working. At which point he would ween me off prednisone. I could tell once I was on a lower dosage of prednisone that the immuran was doing nothing for me. I had my follow up and we discussed remicade, I got approved for pharmacare already and technically could have started taking it, I decided against this. With primary schlorising cholongitis I figured a up drug that's hard on the liver would only be detrimental to my health in the long term. I had decided on surgery. I was so scared. At least now I had a great woman that was supporting me the whole way. It really helped a lot having someone that I could trust and tell how I feel.
So here I was 25 years old now. I had my colon removed September 30th, 2011. I had a temporary loop ileostomy. This was mentally stressful for me. Luckily my employer has been really good to me, they approved my short term disability claims no problem. By Christmas time I was feeling comfortable with the bag, and I was starting to get used to having a stoma...however I'll be honest it made self conscious. I had a hard time looking at myself with no shirt on. I went back to work for about a month, and my reversal surgery was booked for January 24th. I'm currently at the hospital, told I could be discharged today.
The best tip I got for this procedure is to bring your own roll of soft toilet paper. Most hospitals use sandpaper that deceivingly looks like toilet paper, do yourself a favor if your getting your reversal and pick up some good TP!
One thing I noticed is that the hospital didn't ask me what I can and cannot eat. They tried feeding me broccoli and other things that cause gas. I would say it's a good idea to tell your nurse that with out a colon you can't eat certain foods. They had me on fluids the first two nights, my BMs started moving wednesday night. Thursday morning I got to eat toast for breakfast, had a chicken sandwich for lunch and salmon for supper. So far everything has been going smoothly.
The only part I'm not a fan of is the packing of the stoma wound. Luckily they are sending me home with home care, so a nurse will come pack it every day until it's healed. I'm experiencing some mild pain where the wound is, 2 Tylenol 3 generally make this pain virtually unnoticeable. I also noticed that while using a morphine PCA it really helped to take a shot a few minutes before the nurse came to clean and pack the stoma wound.
Was it worth it? Yes. Absolutely. After feeling what I thought was normal for many years, I now regret not taking care of this when I was younger. I have full control of my bowel movements, the first night of the reversal I had some leakage over night but it was minimal and luckily did not happen again since then. I feel satisfied knowing I don't have to take crazy medications anymore, and I'm looking forward to spring so I can get active again.
Thanks for reading, cheers!