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I am new here, with Crohn for 8 years, facing a surgery now.

Hi Everyone.
I am new newbie here. I have been diagnosed with Crohn’s disease in 2006, when I was at the college in China. After the colonoscopy, the doctor told me that I got IBD. But She was not sure it’s Crohn’s or UC.

I was under the treatment with 5-ASA for a month, the symptom was less. Then I had no treatment for about 2 years. In 2009, I had an anal abscess, and I just had it cut open at the ward, as I cannot tolerate the pain, and wait for the surgery on the following day. (when I looked back, it was not wise decision.) one year later, the wound finally formed a fistula.

In 2009, I came to the Netherlands with my fistula. And meanwhile, I treat my Crohn’s with Mesalamine. At that moment, I cared more about the fistula, and quite worried about the surgery I might have. I saw a surgeon first for the fistula; he transferred me to a GI doctor. Then I start my treatment with Humira, 40mg per 2 weeks. And it lasts till now.

The fistula did not react to the medicine, so finally I need to cut it open by a surgery. Not as painful as I thought, and I do not lose my control for the anal. I had another peri-anal fistula, but luckily this one washealed by Humira.
My symptoms of Crohn’s disease went up and down for the following years. I did have some “accidents” within these years, spent more than one hour to empty my stomach before leaving the house. And I knew every public toilets on the way to the office. And if there is no toilet nearby, I would feel uncomfortable and nervous.

Things got better in 2013, my stool was still soft, but formed a shape, and I gain more control for the BM. And when I saw my GI doctor, he said there are some scar tissues in my bowel, that’s good sign for the healing. And we made another appointment for 8 months later, instead of three months are before.

I was too early to be happy with my improved health condition. I did not control my diet as much as before, and did not follow the medicine description strictly. Between Sep 2013 and May 2014, I had high fever (more than39C) for several times, I just thought it would be flu or something else, and my home doctor also did not take it seriously, as I usually recovered within 3 days without any medicine.

But in the end, I need to pay all the mistakes I have made at once. In 9th may 2014, one week before my annual trip back to China, I was sent to the Emergency for high fever for a week and CPR number ( 179 ). I was quite lucky at this time, as I moved to a new place and changed my home doctor. This one is really cautious, and they have the equipment to do the simple blood check at the clinic. Actually, my health condition is not that bad at that moment. I even drive to the emergency by myself. After a lot of examinations, the doctor said that they would let me be hospitalized, as they suspect that I may have an inter-bowel abscess. And they would arrange a CT scan on the following day.

After the CT scan, the GI doctor visited me with a Surgeon; they told me that the abscess was confirmed; besides there was a fistula connecting the bowel and abscess. Why did not all the bad news come together. I was hospitalized for 11 days treated by the antibiotics. After the 6th day, my fever was gone. But they kept me there to make sure the abscess was gone. When I was released from the hospital, they told me that the surgery was not avoidable, as the fistula was formed under the treatment of Humira. It can only be removed by surgery.

Then another colonoscopy was arranged, and they can only check the first 30cm, as my bowel is too narrow to pass.

During the coming visiting of my GI doctor, he prepared me with all the possibilities I may face. The worst one: permanent ileostomy. My girlfriend and I were quite shocked by this. We had really tough weekend for thinking the future we may face.

After that, I began to find the forum of Crohn’s to get some support. And it’s really great I come to here. After reading all the stories from you, I do not fear the surgery as much as before. I learned that it would be a tough time after the surgery, but it would be fine. Time can heal a lot of things. And to keep the fistula and narrow bowel in my body are too risky, just like keeping two bombs you never know when they would blow. It’s really strange feeling that I am in my best conditions for last 8 years, but I am facing the surgery. But I do know the advantage for a planned surgery, and persuade myself to accept it. I even go to the forum for the people who have stoma, the life with a dag is not as bad as I think.

I will see the surgeon in the coming Friday. I hope he can give me some good news.

Thank you for reading, I did not expect to write long at the beginning. It feels good to tell my story out.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the community! I'm so sorry to hear you've been through so much :(

As I'm sure you've read, sometimes surgery is the best option and that may very well be the case with you. Yes, it's scary, but I have no doubt that you're going to do great.

We're here for you anytime. Please continue to update us as to how you're doing.

All my best to you!
 
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