Recently diagnosed

I don't even know how to start..... I was told I have UC on Dec 15 2016. Sept I was told by the general surgeon he was going with UC after 5 days in emergency. I was put on my 2nd 3 week course of Prednisone today after my 2nd trip to emergency because I was dehydrated, nauseous, exhausted, in excruciating pain, feeling like something was trying to rip out of my right side and was only getting very small amounts of goop pour out, sorry for the info but I need to share. While there I had a large bowel movement of yet more sludge and although it was agonizing it did allow the pain to move. By the time they got around to seeing me, the pain had changed and wasn't nearly as intense but after 2 days of it I wasn't about to leave without making sure. Unfortunately the nurse and dr spend 20 minutes grilling about if I could be pregnant all because my dr decided that after pain in my right breast I had an infection. My x-rays were abnormal, something about too much air/gas or something and then the following CT was clear. I saw my dr today and had to argue to get prednisone and I was finally referred to a gastroenterologist after bursting into uncontrollable crying because I've been dealing with this for so long with so few answers and the attitude of just get on with it from every health professional I've seen. From everything I've read here and what I've read throughout the rest of the beloved internet, mild to moderate colitis is characterized by no more than 4-6 BM a day. How can I have that when I'm rarely not running in a mad effort to make it in time no fewer than 8 times a day? On my worst days I've pretty much not made it out of there and had a count of around 18! How can mild to moderate colitis have you in such crippling pain before, during, after and in between bowel movements? I can't find any particular food or drink that makes me better or worse in any way other than black tea which I have with milk and sugar, that relieves everything just a little bit. I'm so exhausted, I don't know if it's only from all this nonstop pooping or if I'm getting low in something. I haven't even been told how much of my colon is affected but can only assume it's the entire thing as the pain is all the way round, at no point during the dr doing his exam have I not been in pain. I know I'm gonna feel a lot better for a few days but I also know I'm gonna start getting bad again and I honestly can't take it! I've lived in pain with my hip since I was 12 and finally started getting somewhere with that once again when this hit me. Not to mention we were seeing a fertility specialist to find out if there'd be any possible way for him to have a kid. I'm sorry for whining but I basically alone right now and could really use other people who've been through this to talk to. Not gonna lie, from what I can find Canada is a dead zone for online support and there are no groups within a 2 hr travel time from me, couldn't even tell you how far I'd have to go cos I stopped looking after the 2 hr mark.

Sorry to hear that. Sounds like your symptoms have been really bad for a long time now. It sucks that the disease is unpredictable, I hope your symptoms get under control soon. Unfortunately I don't think many doctors are experienced in IBD. The gastroenterologists empathise with IBD symptoms far better.

I was diagnosed in December too and had a similarly rough time. I saw my GP 3-4 times and had to attend ER twice before I was finally taken seriously. I repeatedly said I was worried I had a systemic disease and did not believe I had food poisoning/norovirus. But every doctor and nurse I saw confidently reassured me, that it must be norovirus because of my job and to drink fluids. The first time I went to ER, they didn't even take blood tests from me. I felt miserable and exhausted for that whole period and questioned if I was just acting crazy - every doctor and nurse was so confident I was fine. I couldn't even sleep more than an hour at a time in the 4 days before my admission because the abdominal pain was so bad - I normally have a high pain tolerance!
I was almost sent home the second time in ER too. Luckily a friend pulled some strings and an actual gastroenterologist saw me shortly before I got discharged again. He was the first person to take a full history from me and instantly recognised I likely had a severe flare of IBD rather than food poisoning. In my head, had I been sent home again, I would just stay home and "deal with it" for the next weeks. God knows if something more serious would have happened to me. I haven't had a full colonoscopy yet, but I know I likely have pancolitis because I had pain all around my colon in December.

This is all my experience as a doctor! I can only imagine how horrible it feels for patients when they don't feel taken seriously. I was lucky to improve quite quickly without medication once I was admitted (on rectal steroids + mesalazine now). The pain has settled, I feel 80% well systemically now (like the last day of having a flu constantly), but only meet the criteria for a minor flare. I've yet to find any correlation in my diet vs symptoms. Other than milk causing pain.

both of you might be interested in the Specific Carbohydrate Diet, or SCD. There are many glowing reports of it. I am currently trying to follow it while doing a wheat and dairy elimination diet. I have to say that I totally feel like crap now, I am still on Balsalazide but it doesn't do much for me. I tapered off a short round of Prednisone and can't wait to get back on it as I am very fatigued and dehydrated and sometimes nauseous. But I am looking forward to reintroducing dairy at least next week.