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Hello, I am a 37 year old male originally diagnosed with Ulcerative Colitis in 2005. I have been thinking real hard on surgery for about a year now. The last 3-4 years have been especially hard. My energy levels have plummeted, I get extremely exhausted from doing simple tasks. I'm reluctant to go out into public because of the embarrassing outcome of the trip to the bathroom. I've missed numerous days of work, and dealing with HR with FMLA has been very stressful. I've been in and out of the hospital due to flare ups. I've been on every medication from Sulfasalazine to Entyvio in a number of combinations, none of which has gotten me to remission. I've tried the SCD diet, going vegetarian, cutting out red meat and foods high in fiber. Nothing has worked. It seems the only medication to get the flares under control is Prednisone, which I've been on a high dose since November of 2016. However, now that doesn't seem to stop the flares, not to mention how tired I am of the emotional and physical side effects. The GI Dr I'm seeing came straight out and said he is biased against surgery. My old GI Dr and my primary care physician are both in agreement that I need the surgery. I've just had a Colonoscopy and Endoscopy with my GI Dr who said that he suspects that he has found indicators that I may have Crohn's Disease.  He also said that ultimately it is my decision to go forward with the surgery (against his advice), except he believes that I will require an Ileostomy and most likely have to start a new medication, Stelara. So, I guess I'm looking for anyone who has had the Ileostomy and how it has affected your life, good or bad, and maybe a little encouragement on whether or not I should go for this. My quality of life has gone into a downward spiral and it's affecting my family. Any suggestions or insight would be much appreciated. Thank you

Reply posted for Kevin.

Hi. My name is Sophia and I am 18 years old. I was diagnosed at the age of 10. I have been through many ups and downs just like you. I am currently on Entyvio every 4-6 weeks, but I used to be on Humira and before that, Remicade. Last year I was going through a really bad flare up and the only option for me was surgery. I had my 2nd bowel resection and an ileostomy bag was placed on. This was not an easy decision to make, but I can truly say that it was the best decision that I have ever made. Now i'm not saying that having an ostomy bag is a walk in the park. It was physically and emotionally draining. The first couple of weeks were the hardest. It's a huge adjustment, but best part was that I felt free of crohn's. I didn't have one stomach ache, nausea fit, or any of the other side effects we all know. I was gaining weight and practically eating whatever and whenever I wanted, which was very new to me. I had the bag for about 10 months and it was removed last August. I would've done it all over again. Since then, I have been in remission (knock on wood) but I am still having complications from the surgery (fistulas and wound issues). So if you're asking me if getting an ileostomy bag is a good idea or not? I would tell you that it is definitely something to consider. It isn't for everyone but it truly saved me and changed my life for the better. I was able to live life as a 17 yr old, not as a crohn's patient. 

Reply posted for Kevin.

That's interesting. When I had my worst flare (Summer 2014 start) I was on Humira. I switched to entyvio in October which at that point was "too little too late" per my GI. I needed surgery in February. After the surgery I restarted entyvio which gave it a chance to work. 

I'm wondering if your colon is in a similar position, that you essentially need a chance to re-start where the entyvio (or another med) can have a chance to work once the intestine that is beyond repair is removed. 

If you've tried multiple biologics and are not seeing any improvements my guess would be it's time for surgery. BUT I'm obviously not a doctor and I always find it really hard to go against medical advice. Best of luck. 

Reply posted for akr008.

The current GI I'm seeing was recommended by my old GI for a 2nd opinion. He is highly regarded as the leading expert in the GI field and is the director of GI studies at the University of Washington. One of the reasons I was sent there was because the surgeon at that hospital has the most experience when it comes to these types of surgeries. He says he is biased because he is a firm believer in the medicine treatments and how much more effective they seem to be in the clinical trials. He also says that more promising treatments are coming in a couple years, including a more improved Entyvio. But I've heard all this before and quite frankly I'm not convinced any meds would work for me at this point. My colon is 3/4 severely infected based on my last colonoscopy which was just done this last Tuesday. And he says he thinks he has found evidence of CD in the Cecum, which leads him to believe that surgery might not be my best option. Of course the surgeon tells me otherwise. Thank you for your input, I will definitely take it into consideration.

Reply posted for Kevin.

Disclaimer: I dont have an illeostomy. 

However, I have had 2 bowel resections as part of my Crohn's disease management. 

When I was first diagnosed my pediatric GI was very against surgery unless it was our only option. Rightfully so, stats show that once you have a surgery, usually you need another one and at the time I was only 16. We were able to manage my Crohn's with Remicade (after some trial and error). When I switched to an adult GI the conversation changed. I've found that my physicians are hesitant about surgery, they're not jumping in to cut out my gut every time I go to the bathroom, but they realize that surgery can be a successful part of the management of Crohn's disease. 

My first surgery was February 2015 (8 years after diagnosis) my second was November 2015 to repair the first one. I am so glad I had the surgery. I wasn't a functioning member of society, I couldn't get off prednisone, I was at rock bottom. Surgery, and now entyvio, has allowed me to reach remission. It's not always the answer and something you have to think about, but I feel like I will know in the future when it's time for another one. 

Why is your GI against surgery? Is there something in your scans that makes you a poor candidate? Personally I would look into getting another GI if his only reason is "I don't like surgery". Unfortunately surgical intervention is a part of the management of Crohn's and UC. 

Best of luck with your decision and I hope you get to feeling better soon.