Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

New here

Sat, May 18, 2019 10:15 PM

I haven't ever really talked to anyone outside of my close family and friends about this. I was diagnosed with Crohn's disease in 2010, a few months after my wedding. My GP was worried when I lost 70+ lbs in less than 6 months, and I couldn't keep food down. I was sent to a GI, and diagnosed with Crohn's after a colonoscopy. 6 months later, after a month on Prednisone and Azothioprine, I had a blockage, resulting in a surgery to remove a foot of my small intestine. I went in and out of remission for a few years. I tried Azothioprine, then we added Cimzia. That didn't work, so we tried Humira. Then, the abcesses started. I went to my GI who referred me to a surgeon. They both thought it was a one-off. I had 7 or 8 in 2 years. Finally, I was referred to a new CRS. He found that I had scar tissue that suggested the abcesses were caused by a fistula. He did "exploratory" surgery in Feb 2018. When I woke up, I had a seton and a new diagnosis of perianal Crohn's disease. My GI started me on Inflectra. I had the seton for about 7 months, all of which were excrutiatingly painful, and then my CRS took it out after 3 infusions. A month ago, I noticed a sharp pain while working. I went in, and my CRS and GI ordered a bunch of tests, MRI, stomach ultrasound, fecal test, blood tests, and CT scan. My GI said my Crohn's is in remission (yay, even though I haven't had a solid BM in over a decade and use the bathroom 15+ times a day), and my CRS said he didn't see anything. He thought I had just "walked too much". Less than a week later, I noticed a tender bump right over the abcess and seton scars. After an in-office ultrasound of my buttcheek, my CRS said I had an abcess and he wanted to put the seton back in the next day. I had a panic attack in the hospital and begged him not to put that horrid seton back in. He agreed and just drained the abcess and did a partial fistulectomy. I went home with a hole the size of a quarter. It's healing faster than normal. I went for my post-op and my CRS said he still thinks I should put the seton in. He said that I just have to accept the pain. I'm having a really hard time accepting that the seton is my only option, and that I'm just going to have to be in continual pain for an indetermined amount of time. There must be other options, right?! Sorry for the long post... I don't know anyone with these issues and I've been holding this in for a long time.

FPO Trmpt241
Joined May 18, 2019

Thu, July 11, 2019 11:31 AM

Reply posted for charbs.

I have perianal fistulas with a Seton. I used to have 2 but they removed one. It doesn't cause me much pain. However I did have an abscess last month and that hurt quite a bit more than the Seton.We all feel pain differently so we just have to weigh the pros and cons of having the Seton procedures or passing it up. My advice is to get a second opinion.

FPO T joy
Joined Jul 11, 2019

Mon, May 20, 2019 6:12 AM

Reply posted for charbs.

Hello Guys!!
I am really sorry for all your stories. I also have the same experiences as your's with one of my friends. I used to stay with her in the hostel and she has zero control over her reactions. She used to get a lot of anger for no reason. In the initial stages, I didn't feel good about it, but later when I understood her problem I was with her. I used to make her laugh to come out of anger and thought even some good books would change their state of mind. But nothing worked instead, she used to fire on me when I make her laugh. Some or the other time I was also angry with such behavior. There were so many fights happened in between us, we didn't even have a talk for a few days. But all those fights were only for time being because we were like soul mates.
 I thought I was the only one who could help her because obviously the rest of the world won't understand her. I have asked the suggestions of my family doctor to control the anger he told to use some medicines. But I was not satisfied with it because there may be some side effects. I searched over the internet for the solution and heard most of the people talking about <a href="" rel="noopener" target="_blank">cbd</a>. I suggested her to use it but she was very afraid, then I showed some of the case studies, some live experiences etc. After reading all that she accepted as there were no side effects. 
I finally thought of knowing about the best brands of CBD which works to control anger. I finally ended up deciding upon nuleaf naturals brand and also got a discount of 25% from She started using it and seriously you do believe or not, but slowly I was able to find the change in her behavior. There are also other proven facts that CBD can control ADHD. Later, she was thanking me a lot because I was forcing her to go for it and she is really getting cured with the help of it. Hope you people would also try it and let me know your views regarding this. It is just a suggestion from my life experiences do not take it wrong:)

FPO Sravani75
Joined Apr 25, 2019

Sun, May 19, 2019 4:26 PM

Reply posted for Trmpt241.

I’ve had multiple fistulas after a proctomocollectomy. Had to have emergency surgery for a bowel obstruction, and a number of setons put in. Without the drains, the fistula would eventually get clogged and fill up like a giant pimple. It was excruciatingly painful, and when it eventually popped it looked like a gunshot wound. I have pain on a daily basis, but it’s not near as bad as before the drains went in.

FPO charbs
Joined Oct 31, 2016

Related Topics

How do you attend meeting...
Author Image dede1
Joined Jun 27, 2018

With my career I am often having to be in long 2-3....

read more

Finding a job?
Author Image Erinmohn86
Joined Apr 15, 2019

I have had Crohns for over 17years and have gone t....

read more

Needing some advice.. (A ...
Author Image CarolinaChux
Joined May 23, 2019

Greetings everyone, I am relatively new to the for....

read more