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Flaring again.....whats my options?

Hello! I haven't posted in a really long time, I guess Ive been really well & all things crohns havent been on my mind.

I was diagnosed with crohns of terminal ileum in 2009, with strictures. I didnt go on any meds til 2013 when I started on azathioprine which I took successfully until late 2018 when I came off it due to being in remission.

Things had been going well, and I even had my first baby this year - no issues crohns wise. However, 4-5 months postpartum Ive started with loose bowel movements & alot of urgency, but no pain, bloating, blood or anything else.

Symptoms are mild but recent fecal samples are showing high levels of inflammation - so looks like Im starting to flare. My IBD nurse is discussing course of action with consultant this week.

However, given current covid situation, i really really don't want to be immunosuppressed just now but fear it may be my only option (I dont think 5-ASAs are very effective are they?).

Those of you with mild/moderate disease - what treatments do you take?
 
Hi there! I don’t have information for you right now, but I can offer you my thoughts after I have a virtual appointment with my doctor this Monday. I have the same question as you, actually. I have mild Crohns and have never been on maintenance meds, just a round of Budesonide every 5 years or so when I have very minor inflammation seen during a scope. But now my site has significant inflammation and I had a dilation procedure for the obstruction this week, and will start a small dose of “something.” I was very allergic to Pentasa 20 years ago, so am curious what the recommendation will be. But my concern is the same as yours during this time. I’ll circle back by Tuesday next week. Congratulations on being a mom!!! How wonderful. Sorry you aren’t Feeling 100%, but glad it’s a lesser flare. Take care,
 
I had a similar experience. I was on Aza for many years (10-15) and stopped due to being in remission. Had a big flare about 15 months later, the biggest flare of my life, with a fistula for the first time ever. Yay. Unfortunately, I tried Entecort for a month alongside Aza, then Prednisone for a month alongside Aza, but nothing helped. I was then put on to Infliximab.

In terms of Covid - I may be wrong but Im quite sure that there isn't much risk with being immunosuppressed per se. I was told as much by the Dr who put me on Infliximab. In fact, the literature that talks about high risk patients refers specifically to "immunosuppressants such as Steroids". I believe the issue is not the mediaction. It's that if you got ill with covid, and they needed to stop the steroids mid-course, you could be in a bit of a pickle.

So, to cut it short, I think anything but Steroids and you should be fine Covid wise. Of course, ask your Gastro- team.
 
Hi There, First I want to say “I’m really sorry,” for having gone MIA after my GI appt. As the Medical POA and caregiver of my 91 yr old mom, she went into the hospital after my last reply, things went poorly over the next two months, and she passed the week of Christmas. There’s been a lot of admin and sorrow over not seeing her ”properly,” during COVID constraints after 6 years of spending lots of time together at her AL facility. I know there’s a lot of this going on, for so many people, whatever the struggles during 2020—it’s probably a “field day” for Crohns, right?!

So, here is what I should have mentioned to you quite a bit ago...have thought of you and hope you are managing ok. I was started on a 4-month taper of Budesonide because in addition to my terminal ileum acting up, they found a very small, second area (far from the terminal site) of inflammation for the first time. We are all floating the idea of “getting my gut in optimal health with meds first,” and then possibly having another resection at the terminal site (it is 2-3cm, and the new area is 2cm). It was finally time to also discuss maintenance meds since I had never been on them. The decision between us all was Stelara, because of very positive response to that among local patients, with little to no side effects as a rule. I had my Stelara infusion in early Nov., and am self-injecting (very easy, extremely short needle, and great syringe mechanism). I’ve had those in January and March, next one is early May. I had immediate relief within the first 4-8 weeks of Budesonide, then things seemed to plateau. Now I am seeing further improvement as the Stelara has finally aided my healing (reduced inflammation incrementally) enough that I can tell. My issue was strictly ;) obstruction-related, so I was on some Miralax each week to “go” normally...motility was slow. To add to the fun, my first Pfizer shot gave me “Montezuma’s Revenge” for a week, and now, since I have been off Miralax for 3 weeks total, and things seem to be heading into a more normal rhythm, I hope that I can solve for regularity with foods instead. :). I work very diligently on exercise, breathing, and healthy Whole Foods to compensate for stress and aging (turned COVID 60! in 2020). Raised 3 great kids and a crazy Lakeland Terrier and my Crohns stayed awfully calm...but 2020 has been quite the test. Still helping out my in-laws who are out of state and will be visiting with them relatively soon. Second Pfizer is this Sunday 4/11. Fingers crossed! I have a scope scheduled for early June, and perhaps a CT as well to see how Stelara has worked. I also entered my hospital’s COVID & IBD Study, so I will have Covid Antibody tests over the next 18 months and answer surveys for data on how well we IBD patients (both on and off immunosuppressants) Build immunity to COVID. They will share my antibody test results with me. :). Please feel free to ask questions, and I promise I’ll get back to you promptly. Best wishes to you and those who helped with this thread!! Last thought...Yes, mesalamines/Pentasa are not even an option anymore—my doc said they really didn’t work very well.
 
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