For Collicat

Hi Guila, I am sorry to hear that you and your family are also dealing with the crappy disease. I don't know how long this has been going for your son. I assume he has tried most of the meds and they have failed. It is such a hard time.

My son, Dillon, was first diagnosed just over two years ago with ulcerative proctitis. At the very beginning it was controlled with just suppositories and then he had to move on to asacol. A year ago he had a bad flare and he had his first round of prednisone which worked like a charm but within weeks of coming off it the flare started back. Over the year he had the ups and downs of three flares. Every time prednisone worked less and less. A colonoscopy showed that his whole colon was now involved. At this point he was hospitalized for two weeks. He was started on Remicade which seemed to be working but at about the 5th infusion he started only having a few days of "good" and then the flare would start again. It ended up that his body made antibodies against the drug and thus he could not take it any longer (and it wasn't working anyway). Our last choice was azathioprine but he was getting sicker and sicker and we did not want to wait the couple of months to see if it would work. As well our GI and surgeon did not want to see him get any sicker before heading into surgery. Over this time we had been talking with many people about the possibility of surgery and had been very lucky to get set up with one of the best colorectal surgeons in the county. We live in Toronto, Canada and our Mount Sinai Hospital is the best for this type of surgery. His surgeon was Helen MacRae and I truly believe Dillon owes her his future.

In Sept, considering he was so sick, they did a subtotal colectomy and are now giving him time to recoup and get healthy and get all the meds out of his system. I mentioned in my other post that immediately after surgery he felt like a new person. He truly did. Very quickly his blood work started to improve and you could just see him coming back to life. He will have his J pouch built in January and in the meantime has an end ileostomy. To be honest he does not like it very much but I must say that he has accepted it better than I thought he would. Very quickly he learned to deal with it completely on his own and has had no problems with it. We have been told by all the nurses and our family doctor that this is because our saint, Dr. MacRae, made such a "beautiful" stoma. I gather it is quite an art. Anyway he says that he would hate it if he found out that it would have to be permanent but I really believe he would deal with it just fine.

Surgery is a big deal and the recovery takes a while. You have to remember how long these kids have been sick and it takes a while to get the body back to where it should be after surgery. Our next surgery is more involved but at least he will be going into it healthy. We have been told that about 80% of Dr. MacRae's patients get the pouch built and connected in the next operation. She will not know if she can do it all at once until she gets in and sees the health of the tissue. If she feels there is any concern, Dillon will then need the ileostomy for another couple of months after which time she will reconnect which is a very minor operation. All in all we were told to expect a year for full recovery. For him this has happened at actually a good time. He managed to graduate high school (somehow considering all the time he missed) and get marks good enough to be accepted at university. He has deferred his acceptance for the year so he has can take all the time he needs for complete recovery and then will head off to school next fall.

My heart goes so out to you. It is such a terrible worry. I absolutely HATED the drugs and am so happy to see him completely off of them. But at the same time these surgeries are really major and there can always be complications. We are fortunate that Dillon came through the first with no lasting complication (there were a few bumps at the beginning) but we still need to get through the next. I have to believe that everything will be okay and that what ever comes up that we, as a family, can deal with it. I do know that we had no other choice. One way or another he need to get his health and his life back. We were told that 95% of patients, when asked a year after their first surgery, said that they were very happy that they had it done. I figure that you cannot get much better odds than that.

My best advice is to find the very best colorectal surgeon that you can. This surgery is very complicated and there are many judgement calls that need to be made along the way. For someone who does a few of these a week it is no big deal but do not let someone inexperienced near your son. That is one concern of leaving things too long. If things got really bad and emergency surgery is needed you usually get the surgeon on call. This is not who you want doing this operation.

We are open to any questions so please ask anything that is on your mind. I promise to be completely honest. I know that leading up to our decision of surgery I was craving every little bit of information that I could get. I have to tell you what a "sense of peace" I now have knowing that that " *&&*(!" colon is gone. Our surgeon told us afterward that Dillon's colon was one of the worst she had seen and it feels like such a VICTORY to know it was thrown in the garbage.

about a month post surgery Dillon went out on a Friday night with his friends and as he was walking down the street I could hear his laughter for ages. It had been so long since he had been in that place. I really felt like my prayers had been answered.

Sorry if I have rambled on too long...but you did ask...lol

Don't hesitate to ask any questions.

Cathy

Guila, you click on the "Control Panel" tab at the top of the page, then select "Edit Profile." The box just above the first blue divider line should show your e-mail address. Go to the first line below the blue divider and select "Show my e-mail address" then go to the bottom of the page and click "submit".

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