• 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.

Pentasa wasn't working, doctor prescribed Imuran or Cimzia due to wanting to conceive

Back in June I was put on my first medication, Pentasa for a month after a small bowel resection and still had flare ups in my small bowel. Because I wish to plan for more kids in the near future, my doctor has now suggested Imuran. I told him my fears of Imuran (and all meds really) so he also suggested Cimzia. Any positive experiences, suggestions or pregnancies on Cimzia out there? Even Imuran.

To give a little background, I was officially dx/treated for Crohn's ilietis last year. For the last 15 years, I've had one or two flare ups a year and every few years they result in a trip to the ER for a bowel obstruction. I've had GI's flirt with the idea that I had Crohn's, but Colonscopy(s) always came back looking good and no other indications i had it, as the inflammation and blockage would go away by the next morning and I wouldn't have it again for another year or two.

So, fast forward years later where I had gone on a gluten and lactose free diet, as I had my allergied tested. When I avoided these, I felt great. I had a baby in 2011 and was able to eat things with no symptoms, so I cheated when I craved things. It wasn't until my baby was just about 8 months old that I started having the flare ups again. My flare ups involve the beginning of some minor cramps, gas, bloating, sometimes constipation, then they either quickly or over the period of the day the increase and fluctuate throughout my upper and lower right side. I stick to liquids when I fear it may turn into something and they still involve the most horrible pain. I'm moaning and crying on the floor or in bed for hours, just hoping I will pas out and awake and it will all be over. Bowel movements don't relieve the pain and soon, my stomach becomes distended or bloated and I vomit a great deal. I ride it out until the pain has gone done. I have been to the ER many times for these too.

After having my son, I started seeing my step Dad's GI and he did a small bowel follow through/MRI and found scar tissue in my small bowel. Due to this, he suggested a resection and to take Pentasa after as it is released in my small bowel where my inflammation appears. I decided to get a laproscopic small bowel resection this May. I wasn't on anything until about 2 weeks after surgery, then I was prescribed 500mg horse pills of Pentasa. I always felt off taking these, like they would not sit well in my stomach. I'm a horrible pill taker anyway; all of my supplements are liquid, chewables or gummies :) It has also been very humid and hot this summer and when I'm running around after my toddler, I easily forgot to drink a ton of water, so this could contribute as well. Two weeks after taking them, I wound up in the ER with another bowel obstruction, NG tube and stayed in the hospital for a week on a liquid diet. I was put on a low residue diet and my pill size was reduced to 250mg of Pentasa (4 pills 2xday) and Enticort (3xday). Well, two weeks later (also after slowly adding some cooked veggies to my diet) I was in the ER again with a partial bowel obstruction. I've had probably 8 episodes since my surgery in May, so my doctor took me off Pentasa and Im now on Prednisone. It's been over two weeks on Pred. and I feel good, but have a decision to make about my future meds. I have horrible anxiety and research the heck out of things until Im exhausted, so I wanted to see what anyone else thought. I am still new to Crohns and all of its treatments.

Since I wish to continue growing our family once Im in remission, I wish to choose meds that will work for me, but also are safer to take during pregnancy. I'm already freaked out about the idea of a needle, when I was just getting use to the thought of having to take pills for the rest of my life. In addition, I have fears of cancer and other risks presented for Imuran and these meds. My only experience with Imuran is that my step dad was on it for a week before he had a heart attack. He also was taking other meds and they may have counteracted with them, but he is now on Remicade and doing well. This story is also why I fear Imuran, even if my dose was to be small at 40mg. I've also come across many contradicting opinions on its safety during pregnancy. I feel somewhat confident with Cimzia, but the fact that its an injection and a TNF Blocker used to treat moderate to severe Crohns, makes me I feel like I haven't tried many options yet. Any thoughts to help educate me or help relieve my anxiety? My GI is very supportive and says a lot of his patients are on Imuran, but Cimzia is good but just hasn't been around as long. Is there any other meds I should suggest?

This is my first post here, so its a novel...thanks for reading it!:eek2:
 
Last edited:
Hello and welcome to the forum!

I am also trying to get into remission so we can start TTC and I have just started cimzia as my rheumatology and GI dr said it has been used successfully and safely before and during pregnancy. So far it is going really well and the injection isn't as difficult as you think it is going to be the most difficult part for me was the night before my first ever injection I was up all night worried but it was for nothing. I did the injection nice and slowly so it didn't hurt and then carried on my day and I have already noticed after two loading doses a massive improvement in my disease. For me this medication was one of my last choices before surgery or trials so I am in a different position in that respect as I have tried most other meds. I have read a few stories of people going on to conceive whilst on certain meds used for treating crohns hopefully someone will come along so to share their story. I hope you figure out what med you want to try soon x
 
Last edited:
Thanks Kayleigh! I'm glad to hear Cimzia is working well for you. Do you find you feel ok after the injections? I've read a lot of people feel tired and can feel nauseated. I'm sure it will be different for everyone, but just curious. I'll look around the site more. Good luck with your remission and future TTC as well! Thank you again for the reply.
 
I haven't noticed feeling any more tired than usual or any sickness, the only thing I have noticed is my stomach does feel slightly tender after the injection but I guess that is normal with almost any injection. That's the problem it is so different for everyone it's hard to know what it will be like without just going ahead with it and seeing what happens in a lot of cases but making yourself as informed as possible can make it a lot easier.
 
Top