Proctosigmoiditis

I’m from Vermont, and I’m a stay at home Mom with my 15 month old son. I like putting him in his stroller and going for walks when the weather is nice.

I’ve been struggling with urgency (needing to get to a bathroom ASAP when a bowel movement comes on, usually with little to no warning). I also sometimes have stomach pain and bloating, assuming it’s related to the Ulcerative Colitis.

I was diagnosed with proctosigmoiditis (a form of Ulcerative Colitis) affecting the lower 10 inches of my colon.

I was diagnosed in April 2015 My GI doctor had put me on Rowasa (mesalmine rectal suspension enemas). I went to the pharmacy and remember seeing this huge box and was mortified when I realized what I had to do with the medication. I was even more upset after more doctors visits when I learned I would have to take medicine for the rest of my life.

For a few years the enemas worked.

I could eat whatever I wanted and didn’t have the urgency that I do now. My UC got bad after having my son (January 2018), more so once I started weaning off breastfeeding around January 2019. It’s been flare up after flare up since. I’ve had several instances where I was out with my baby, and had to practically run to a restroom and bring him in the stall with me. I was on a walk once with my baby and couldn’t make it to a bathroom. I had maybe 20 minutes still to walk home and knew I couldn’t make it. I was mortified and just wanted to die. I remember thinking how bad I felt for my son that his Mom can’t even go anywhere without having to go to the bathroom and that she has accidents….how embarrassing.

Also, I stopped being able to retain the enemas. They would expell out most nights. I tried soaking in hot baths to try reducing the inflammation in my rectum so I could get the enemas to stay in, but that rarely worked. After dealing with urgency and not getting much help over the phone through my GI doctor, I decided to do a very low fiber, low fat diet which helped a lot. It prevented me from having to go to bathroom as much. Therefore, I didn’t have as much gas and stool and have been able to keep the enemas in. Still taking them every night. It took maybe 2 to 3 weeks to get symptoms under control with the enemas this time, but the urgency is still an issue. Even when I’m feeling good, having formed stools, and having less bowel movements in a day, those bowel movements are still pretty urgent.

Diet plays a huge factor in how I feel and in my symptoms. When I ask about diet, my GI doctor doesn’t say much and that I shouldn’t need to cut out dairy or gluten, but if certain diet works to keep doing it. With that being said, and since I’ve been doing somewhat better, today I tried eating how I used to….eating higher fiber foods, wheat bread, triscuits, oatmeal with an apple (even the skin on the apple) etc and tonight I couldn’t retain the enemas. I having a feeling I can no longer have gluten or high fiber foods. Does anyone have dietary advice that’s helped you? Any suggestions on what, if anything, helps with getting rid of urgency? Also, taking enemas is really putting a damper on my sex life and relationship. I have high hopes for FMT (fecal matter transplant) I’ve heard about in helping with UC.

Medications / Other Treatments:

Rowasa enemas used to help a lot. Now, not helping so much with urgency, but with most other symptoms. My GI doctor called in Lialda pills which I haven’t picked up from the pharmacy yet. Supposed to take those every morning overlapping the nightly enemas for 4 weeks, then try stopping the enemas. I did try pills before ( can’t remember if it was the same ones) but they didn’t really work. Fingers crossed these pills work. Enemas are so uncomfortable to take, and cause me gas and cramping. I think diet is key. I think low fiber and possibly gluten free will help me.

written by Talia B

submitted in the colitis venting area