Meet Ashley:
I was diagnosed with Ulcerative Proctitis about 11 years ago. It was very mild and when I experienced a flare, a short dose of mesasalamine suppositories would kick me back into remission. In March of 2013 I had my son and in June I started to experience the worse flare of my life. After battling it for 7 weeks I ended up in the hospital down 60+ pounds and on morphine. My GI started me on Remicade and its been a life (and colon) saver. My disease has gone from mild ulcerative Proctitis to moderate/severe UC. I am currently going for remicade every 8 weeks (800 mg/kg) and 150 mg of Imuran daily. I suffered a mild flare that began in August and have just stopped taking the salofalk suppositories as a scope and bloodwork indicate that I’m out of the woods. This disease has changed my life in the last year. I’m definitely a more anxious (some would say neurotic) person and I’m working hard every day to not let Ulcerative Colitis rule my life.
Some more background info:
I’m a mom to an amazing almost-two year old little man who is my whole world. I’m currently on disability and am grateful that I can stay home with him everyday.
Colitis Symptoms:
Currently not experiencing too many symptoms other than occasional loose stools if I eat something that doesn’t agree with me. Normal BMs range from 1-3 a day right now as I’m not actively flaring.
Thinking about Baby Number 2
I have 2 questions…
First, is it possible to experience some symptoms without being in a flare (IE, having increased BMs or looser stools on a given day). Does that mean a small flare or just a bi-product of this disease?
Secondly, now that the mild flare has stopped, my husband and I are trying for baby number 2. I got clearance from my Dr at the beginning of October but we’ve waited a while longer until I felt comfortable. I am so excited to give my son a sibling and at the same time terrified of another massive flare either during pregnancy or post-partum. Does anyone know what the likelihood is approximately of experiencing a flare pp? Also because I’m on remicade and Imuran, if I do flare, can I expect it to be at least manageable (ie not have to go to the hospital)? My GI made it clear that I shouldn’t get pregnant until I was experiencing no symptoms to reduce the risk of flaring during a pregnancy but hasn’t given me much indication as to what to expect afterwards (and I’m a planner so I like to know these things). Also, the game plan is to stay on both medications throughout my next pregnancy as the risk of having issues if I come off them is much greater than the risk of staying on them.
My current medications include:
- Remicade 800 mg/kg once every 8 weeks
- Imuran 150 mg daily
- Salofalk Suppositories as needed
I have also made some recent dietary changes that have had a huge impact on how my gut feels on a daily basis including cutting out most gluten, all caffeine, all artificial sweetener and high fat/deep fried foods. In fact, since making these changes, my last blood draw shows that my active inflammation levels are almost non existent (lower than they’ve ever been post flare) so I know that making these changes has played a part.
During a Big Flare I Tried:
Salofalk Suppositories
Asacol
60 mg Prednisone daily
IV solumedrol (not sure of dosage)
An ER Dr also put me on Flagyll and Cipro (big mistake)
written by Ashley M
submitted in the colitis venting area
I was diagnosed with Ulcerative Proctitis about 11 years ago. It was very mild and when I experienced a flare, a short dose of mesasalamine suppositories would kick me back into remission.
Hi Ashley,
I think you might benefit from reading Brittany’s story from November 29, 2013 (just about 1 year ago exactly:).
Also, there’s a section on the site you should also scroll through with pregnancy related stories (your story is now in that section too:). here’s the link for those: https://ihaveuc.com/category/colitis-stories/ulcerative-colitis-news/pregnant-with-uc/
And, definitely give a read to this survey of 107 women all about their previous pregnancy results with regards to flares etc… Lots of good info in there for you:
https://ihaveuc.com/pregnancy-and-ulcerative-colitis-107-person-survey-results/
On to flares… I think most with UC would agree that its normal to have a few looser than hard bowl movements from time to time without considering themselves to be in a “flare up”. But when that along with the other symptoms like cramping, bleeding, urgency start to come into the picture, well I think that is more safe to say a flare up is starting/going on.
wishing you the best,
-Adam
Hey Ashley,
Personally, I don’t consider myself in a flare, unless I have several symptoms that persist for over a week. So if I have pain in the gut for a couple days after eating something I don’t tolerate well for some reason, I don’t consider it a flare. I am definitely on high alert though, and do everything I can to soothe my gut.
I think it’s not a flare, it’s a “bi-product” or maybe a pre-stage.
I remember my first GI almost refused to label me as “in remission” for the longest time, even though I considered myself to be there. I know you want certainty so you can try for baby number 2.
I just don’t know if there can be certainty. I am now 21 1/2 weeks pregnant and was in remission before. I got a huge flare, though it was because several doctors recommended to get off the meds and you already know that you will stay on because it’s too dangerous to mess with it.
I think there will always be a chance to flare during pregnancy, because there is just so much going on. But if you alert your doctors and have some good specialists, you have to worry much less of ending up in a hospital.
Also, like you said, giving your son a sibling is wonderful and probably worth it in the end. Even though I had such a bad experience in my pregnancy right now, I will have more, because now that I am over the flare, it is just the best experience, and my baby seems to be doing amazingly.
Good luck to you :)