Flaring 1 month, remission for 2 months

I'm new here, and I got diagnosed about a year ago at age 20. I'm really really angry and depressed because I never had any health issues of any kind before this.

I have proctosigmoiditis. I usually have a lot of blood from my 8-10 bowl movements per day when I flare. And sometimes, I'm still bleeding when I'm in remission.

I'm currently on Lialda, which I'm convinced is completely useless. I'm on 2 tabs a day w cannassa. In flares, I'm taking 4 a day. Right now, I've been using corticosteroid enemas. The last time I used it, I got remission after a week.
I'm on day 4 now with the enema, and I'm waiting until I'm done with it at day 7.

I can't handle this anymore. I don't want to keep taking steroids, definitely don't want to get oral steroids or immurons or anything that could potentially induce unnecessary health problems. My mom is diabetic, so I'm prone to it. This is the last thing I need on top of my UC.

I'm really considering surgery JPouch. I don't have complete info, but people seem to be "cured" and happy with the surgery. I consulted my gastroenterologist, but he seems pretty against it. He only recommends surgery for people who can't handle the meds/drugs, which I don't want to take in the first place.

What do I do? I feel so lost and depressed. I want to live my life. I've yet to live my life. I don't want to be a slave to this disease.

Hello & welcome :)

I am sorry you're feeling so defeated with this illness. It is truly terrible. I don't think it's fair for your doctor to dismiss your interest in a j-pouch. It's really not their choice, it's yours. I don't know what kind of health insurance you have but you can consult with a colorectal surgeon and get more details on the surgery. Are you on any medications for your UC? Lialda helps a lot of people and it's a mild medication without many side effects. A lot of us use it orally and rectally. You could also consider rectal steroids, they are a steroid which i know you don't want, but they have less side effects. Entocort is another steroid that is absorbed in the colon and has less side effects. There are things you could try like fecal transplant or probiotics, we have lots of members having luck with diets. Please check out the resources thread for more info.

Sorry you're having a difficult time. I started out with initially being diagnosed with proctitis and it quickly became full blown pancolitis (because I was an idiot and didn't treat it). The symptoms are certainly awful and everyone on this board can relate to your mental state and general outlook toward the disease and it's medications. It took me a while to finally accept and try immuran/6MP, remicade and humira. The first two didn't work and the 3rd I start this week.

I think your doctor shouldn't completely brush off your inquisition about surgery as it's always another option and you should know your full range of options since it's your life. But at the same time, realize that once it's out it's out. For good. With your disease being in the lower left side (I think) of your colon and not anywhere else you should certainly look at all the medicinal options. There's always a real chance of remission while keeping your colon. Then maybe someday down the line they'll find something safer for a "cute" who knows.

I know for me that surgery, while a great option was/is a last resort. I wanted to make sure I tried all the meds so that if there are any complications with the j-pouch or 5 years from now they do have a cure then I don't regret my decision because at the time I know I was suffering but I did EVERYTHING I could.

Hopefully the enemas will work for you, they do take some time but work wonders. Try and stay positive and keep an open mind about the different medications. The risks they pose usually pale in comparison to the risks you take driving to work everyday, but you still need to get paid just like you still need to be healthy.

Good luck!