• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Freaked out facing reality

Hi everyone. I'm new here and really just getting started on actually facing what's been going on with my Crohn's. Since being diagnosed in early 2013, I've really dragged my feet on taking care of things. After over a year of usually not even being able to read about Crohn's for more than a few minutes and not really wanting to talk to anyone about it, I finally made my account here and will see how this all goes. So "my story" then...

I've always had a relatively "sensitive" stomach, but nothing really troubling until 9 years ago when I started having episodes where bloating would build up over a couple of hours to the point that I would have to vomit to release the pressure. Typically, this would resolve on its own overnight and just leave me a bit spent the next day. This has happened an average of four times a year on average.

I went to the ER about 7 years ago during one particularly painful bout where I was experiencing pain at the site of a small benign umbilical hernia that I'd had for 15 years. The surgeon on call suggested that I have it repaired with the theory that it was "tethering" the intestine and causing an occasional kink. I did the surgery, which initially appeared to help for a year, but then symptoms returned.

I went back to occasional bouts of the bloating/vomiting with no other day-to-day symptoms of Crohn's. In fact, no one even ever mentioned Crohn's until my primary referred me to a gastroenterologist about 2 years ago. About 1.5 years ago I was hospitalized 3 days with a particularly acute partial obstruction that ultimately resolved with no more than hydration and observation.

Following that, I had a workup that involved an MRI, colonoscopy, and a second opinion with the Crohn's gurus at Brigham in the summer of 2013. I did a brief trial of budesonide, but no other treatment besides stress-management and a bit of dietary stuff. My last episode was 5 months ago, but a repeat MRI this month showed expanded SB inflammation and a slight impression of the beginnings of a fistula formation. On the theory that it's better to knock out the inflammation before developing scar tissue (fibrostenosis) or a fistula, I've started the ball rolling on medication with Remicade.

I'm feeling a bit better about starting medication, but have been struggling with some real bouts of freaking out about the immunosuppression and cancer. I've got a little distance on it now, but at times it's felt a little like I'm poisoning myself to save my gut.

I don't really know what to expect from here, but just writing all this seems to have been a good thing for helping all this sink in.


Forum Monitor

Welcome to the forum.

I understand your apprehension. Obstructions are awful.

I've been on Imuran for a year with no issues. It did take a few months for my body to adjust. I just started remicade and have already noticed a slight improvement.

Hope it works great for you. Sending you my support.
Welcome syzygy,
The medications are an issue. I've had a bowel resection, but I'm still on Remicade, Budesinide and Lialda. Have been for more than a decade. It can be scary at times, but I finally came to the conclusion I didn't have much choice. If I don't take Meds, life is miserable and I'm headed for more and more surgeries- which are also scary. So, I march on daily and know that my quality of life is good because I'm treating this disease.
Keeping my fingers crossed for a cure.
I will mention that I finally got serious and made significant changes to my diet and that also made a considerable impact for the better. (Paleo and FODMAP)
I love remicade! It totally gave me my quality of life back! The side effects are definitely scary. But I also try to remember how scary it would be if i didn't take care of my crohns to the best of my ability...and that scares me much more!

Good luck with everything! Know that you always have an ear here!
If the meds side effects and possible side effects are freaking you out, you need to do a little more reading, especially on these forums, there are some real horror stories of what people have and are going through even with the meds.

For just about any chronic disease the list of side effects and possible side effects always sound worse than the disease itself, just got to bite the bullet and get on the ones that work for you and improve your quality of life, not detract from it.

Be happy there are some for us that will do this, there are diseases out there that the meds detract from your quality of life and they have no choice but to take them anyways or die.

Anyways, welcome aboard.
Thanks for the kind words everyone.

Reading some of the stories has been intense and helped me realize how fortunate I've been in terms of avoiding really serious consequences so far. Not that partial SBOs aren't potentially dangerous, but at least there haven't been any perforations, emergency surgeries, etc. In some ways, despite having episodes for the past 9 years, I feel like I've caught this early. Having imaging showing the worsening inflammation has been a part of the decision to start Remicade.

The diet hurdle is going to be a big one for me. I have a relatively healthy diet by typical standards, but it's a mess relative to the SCD and paleo diets that seem to help folks here. I'm great with healthy meat and veggies, but a really nice crusty bread or plain old chips are real comfort foods for me.