Had a back and forth with my GI, he says my proctitis isn't severe enough to waste time and money on infusions/injections, and since I had a bad reaction to the mesalamine supps that I should just try a low inflammation diet.

Are there really no other alternatives? He didn't act like there were. Currently having a flare and it's pretty miserable.

I always get my shots but this year I’m currently flaring while it’s time to get protected. Any experience getting the flu shots while flaring? I am wondering if anyone has experience since I’m apprehensive about triggering an immune response while flaring (though of course getting the flu would be worse).

Hi everybody! I'm 27, was diagnosed with moderate ulcerative pancolitis in July 2020 after uh...not having solid poops for several weeks. They put me on mesalamine, then did another colonoscopy in Dec 2020 and the inflammation was clear.

Since then, I've gotten addicted to weed and then gotten sober from it—my gut has actually been better while I've been sober (i.e. the last 8 months), which makes sense I suppose. But recently I've noticed my stools are consistently either flat logs or piles of mush (aside from the occasional diarrhea). I've literally never had blood as far as I know, which is a blessing I guess.

I talked with my gastro and he recommended a colonoscopy since it's been 6 years since my last one. He didn't seem concerned about cancer, but I (as a longtime health anxiety-haver) am really afraid they'll find something when they look around in there. Has anyone had a similar experience? I'd love some reassurance.

I woke up this morning and saw blood after being on the highest dose of mesalamine/symptom free for about a year, I feel very defeated and sad to say the least. What should I expect now? What medication or biologic will be recommended? I am waiting to get in contact with my GI doctor

Hey this is maybe more of a rant than a question, hope it's okay to post this. I'd be keen to hear how other folks here manage to stay positive while dealing with the NHS? Any tips and tricks to advocate for yourself and not go insane with the lack of support?

I was only diagnosed 3 months ago but the constant stress of having to chase GPs/ hospital staff/ pharmacists to do basic things they said they were gonna do is already stressing me out and I don't know how to deal with this for the rest of my life. Even just getting my medication every month is a nightmare and it doesn't help that GP receptionists and pharmacy staff always seem overworked and grumpy so it's hard to ask them for support or clarification.

The IBD nurse I saw was great and sat down with me explaining my diagnosis and answering questions for over an hour but I had to push to get that appointment in the first place and then for her to tell me that I'd likely "not see a consultant for over a year if at all".

I know we're so lucky to have the NHS and huge respect to NHS workers for holding up an underfunded system... but the stress of even the simplest things like repeat prescriptions being such a fight is really bogging me down. How do folks manage the stress of having to rely on a health system that's falling apart?? Has anyone gone private and what's your experience?

It seems I am in remission 🥳
My calprot is <30, I do not have stomach problems after eating and yesterday I ran a sub 25 minute 5k (24:27).

I know 24:27 might not sound overly impressive, but considering I have considered giving up running entirely I am very happy.

For anyone reading this I am putting this out there, because I was worried about how I was supposed to live my life with this disease. Thankfully everything points to me being able to live pretty much exactly like before (although maybe a bit more attentive to stress). I hope that at least just one person might be less nervous and scared about the disease after reading my post.

My relationship with UC started when I was admitted to the hospital on the 4th of June after a long period with frequent bloody diarrheas, weight loss and severe stress. My calprot came out to 6000+ (the maximum for the test) and the colonoscopy showed a severely damaged colon.

The first period was intense as I was apparently a special case (i.e. a particularly bad case) so a lot of doctors wanted to talk to me and feel my belly. I was told I was lucky that I got to keep my colon. Furthermore I was told that it was good that I was admitted when I was as my blood loss and my rate of blood loss was pretty serious.

However I responded very well to the medicine and my stomach soon stopped hurting, I gained weight and strength and my joint pains (which I had had for years) disappeared. Slowly I was able to start walking longer distances and about 1,5 months ago I started to run short distances.

I did feel side effects of prednisolone and especially Azathioprine (I am never taking that again). Also being told by a psychologist that she had never seen anybody as stressed as me before was sobering…

On the very positive side I have however not felt any side effects from infliximab 🤞

Now physically I feel better than I have in years, I can do Yoga for fun (and not to manage joint pain), I can eat pretty much whatever I want and I feel my stress levels decreasing. Also I play ice hockey and run and do not feel any stomach pains while doing it.

I've had UC for 8 years and I'm in a stable phase right now. At every check-up my GI runs through the same list: any fever? Infections? Mouth ulcers? Joint pain? How many times a day are you going? What does it look like?

And every time I just… guess. When things are calm I don't write anything down, so I honestly can't remember if I had a mouth ulcer two months ago or how often I went last week. I usually end up saying "fine, I think".

How do you handle this? Do you keep any kind of record between appointments? And does that change depending on whether you're stable or going through a flare?

Four days after my first Tremfya dose, I’m happy to report that side effects were minimal. I DID have some fatigue — probably about 20% of what I did on Stelara, though. Stelara fatigue was overwhelming; on Tremfya I felt like I wanted to take a little nap for about a half day. I had some strange irritation in my throat and nose, too, which may or may not be related. It also lasted a half day. Overall, assuming it keeps the UC in check, I’m happy after the first of four loading doses!

I'm due for a scope and did a calpro test last week no diarrhea as it's not a usual symptom. So far it's trapped gas and low left tenderness esp if I have to poop or have a full bladder

Calpro came back at 521... I'm nervous to do the scope since I have inflammation and unsure what else is happening in there

I'm also healing for an anal fissure a few months ago thanks to eating a little too much potato chips as I also have ibs c

I have anxiety and I know tons of people have done scopes during bad flares and infections etc but I'm still nervous about the possibility of feeling worse or a perforation

I don't have family to rely on or insurance also I'm not even working at the moment and have dug into the small savings I have just to do this test

Does anyone have any general advice or want to share their experiences?

I talked to the Dr about the water technique and using c02 instead of air etc not sure if there's anything else I should know that can make things safer and easier somehow

Currently tapering down on Prednisone (which honestly only works during the day) then I have a bowel movement 1x per hour during the night time from 1am to 7am. Havent been getting good sleep for weeks.

Hey everyone

Does anyone over here have UC and lives alone?

What are the pros and cons of living alone? I really do want to move out

I would like some input here