New and need advice on what's next to try for medication

Hi,

I'm Chrissy. I'm 38 yrs old and the mother of three. I was formally diagnosed with Ulcerative Proctitis yesterday by my GI doc. Although I'm thankful that I do not have cancer, the though of having a life long illness that could potentially get worse, is really frightening me.

This all started with my entire family getting a stomach virus that lasted for about two weeks. Everyone got better but me. I started having more urgency to go, frequent trips to the bathroom as well as passing blood and mucous with and without BM. I had a colonoscopy two weeks ago that revealed through biopsy, "idiopathic chronic proctitis". The biopsy is clear to state that it is suggestive of IBD but per the biopsy, there was not enough evidence to label it as such. However, after having my follow up appt with my doctor yesterday, he feels this is "most likely" a variant of ulcerative colitis-its just in about 5cm of my rectum. The rest of my colon looked great-no polyps or inflammation.

The doctor had given me a sample of Rowasa after I left the colonoscopy. I used it that night and was fine. But my prescription was filled generically and after I used the first generic one, I had a bad side effect. My body felt like I had the flu and my legs felt so sore. I called the doc and he switched me to cort enema to use for two weeks. My doctor said likely that this will be chronic and that he just wants to see how I feel when I'm finished with the meds. I'm used the cort enema for 9 days so far and I've had less frequency of BM's and no urgency. I'm still having some bleeding during bowel movements but not nearly as much. I asked the doctor if this is where I'm supposed to be for this far into the course of enemas and he said yes. I thought the enemas just treat the symptoms but that we need something to take to help our immune systems. I already told him I will only take prednisone as a last resort.

My questions:
In my situation, what is the most typical thing a doctor will prescribe after the initial 2 wks of cort enema? Are there any people who only need to use the enemas or does everyone need to be on oral medication of some kind? Is it normal for doctors to have a wait and see approach to this?

Thanks for your help

I take Canasa and Lialda, along with a few herbs (see my signature)

I would ask the doctor more questions at the next appoint. Proctitis is tricky and most cases are not UP(UC) but caused by infection or radiation. A few people diagnosed with UP never require treatment again or get by without maintenance drugs. Might just be those people were misdiagnosed and had infectious proctitus. Having been triggered by an infection makes me wonder. So does they biopsy report.

Canasa is now approved as a maintenance med for proctitus. I found it to be very convenient to use.I had some very bad ulcers in the rectum and they healed it in days. You can get the equalivant in Canada for $70/30 if you have a high deductable or poor brandname coverage

It does make me wonder though if you are 5asa(mesalamine) intolerant( or intolerant to sulfa in the enema). In that case, maybe that is why he changed you to cort enema. I don't think canasa has sulfa but it is a 5ASA

I would hold out hope that you don't have UP. Sounds like maybe your doctor does too

"My doctor said likely that this will be chronic and that he just wants to see how I feel when I'm finished with the meds. "

Doctors tend to prepare you for the worst not tell you you might be lucky.

I have poor insurance and not much money but if I were in your situation I would think about going to Mayo or a similar clinic and spend some money getting a full evaluation.

Or really question your GI to see how sure he is. He doesn't sound that bad to me.

If you have a family doctor, maybe talk with him.