UC: my story (please help)

I realise this is a massive post and basically my life story for which I apologise but honestly I need to get this off my chest. If you take the time to read any of this and want to respond with either advice or your story or anything please do. I would appreciate it as I feel so alone and in despair.

Ok here goes. Two years ago I was diagnosed with ulcerative colitis at the age of 18. I had been experiencing mild stomach cramps and diarrhoea frequently for a few weeks. Now this was usually at its worst in the morning and then I would live the rest of my day pretty much as normal. However, I knew something wasn't right and suspected I had a stomach bug or something even though I had no other symptoms. I called my doctors and they brushed it off and said 'there's nothing we can do for diarrhoea. It will pass on its own, just stay hydrated.' This happened several times. But of course, my symptoms continued on for several more weeks at which point my doctor suggested I do stool samples. These revealed nothing abnormal. Finally, a doctor suggested I go for a colonoscopy as she suspected I may be celiac, or suffering from Chron's or colitis, among other things. So I went for the colonoscopy which revealed I had mild to moderate inflammation on the left side of my colon, aka ulcerative colitis. When I was diagnosed, I didn't really think anything of it. I had never heard of this disease before in my life and while I was a little scared at first, my symptoms didn't stop me from living my life and weren't a massive inconvenience. The disease was very mild at this point. I was prescribed pentasa granules (mesalazine) per day, made no change to lifestyle or diet and off I went and lived my life for two years in blissful remission barely giving colitis a second thought.

Then, just over 2 months ago, my first flare up began and my eyes were opened to the true horrors and meaning of ulcerative colitis. Sorry if I sound dramatic, but the last 8 weeks have been the hardest and darkest period of my entire life. It started off as the good old stomach cramps and loose bowel movements which were becoming more and more frequent. I didn't even realise I was flaring, I thought oh it will go back to normal soon surely. But it kept getting worse, to the point were my food intake dropped dramatically. I would barely eat anything just to avoid stomach cramps and make it through the day. Now what really frustrates me about all this is the fact that I had just finished a 4 month summer holiday from uni (yes our summer holidays are very long in the UK if you're at uni). I was back at university, for my fourth and final year, all of three weeks when this started. Three weeks. Why could this not have happened during my fourth month vacation?! Anyway... I also have a part time job at the weekends by the way. Safe to say both these aspects of my life have been put on complete hold the past 2 months. I am most likely going to have to restart uni next year and watch all my friends graduate without me. My muscles feel non existent because I have been in bed for two months and I am so weak and fatigued. I miss my friends and my life. But back to the story...

My mum started noticing I stopped eating and asked what was going on. I told her my colitis was acting up and we made an appointment with my IBD consultant. It was around this time I was no longer able to function and the flare up completely floored me. This is where the 8 week battle starts. My IBD consultant prescribed 40mg of prednisone which I was on for about 2 weeks before realising it was doing nothing. It made zero difference so I went back and he increased the dose to 80mg which I stayed on for about 2/3 more weeks. Again, zero help. I was deteriorating fast, not eating, vomiting and having over 20 bowel movements a day with no sleep as it was always worst at night. Blood tests which had been taken each time I visited my ibd consultant are what put me in hospital though. I received a phone call one morning weeks later from my amazing IBD nurse, Lyndsey, who had just been hired. It seemed she was the only one with the good sense to bother to call me to inform me that my blood results revealed I was suffering from dehydration, anemia and high levels of inflammation. Had she not been hired I honestly don't know if or when I would have been informed of this. Anyway, she made it clear I needed to be admitted to hospital. I was terrified. To cut an already too long story short, I went into hospital and received IV steroids which, guess what, didn't work so went for an endoscopy (worst experience of my life) which revealed moderate inflammation in my rectum (proctitis) and a blockage in my colon which I was given small dosages of laxatives to clear. My temperature and heart rate were sky high but this eventually came down with hydration drips and IV iron which improved the anemia (docs wanted to give me a blood transfusion but thankfully opted for iron). Now my only problem was the inflammation. The laxatives made me vomit but moved the blockage. The stomach pain finally subsided once I got home from the hospital. I spent a week in there and was so glad to get home. But the pain in my rectum recently has been unbearable. Every time I have a bowel movement I am screaming in pain. I was prescribed asacol foam enemas which I administer twice a day. Been on them for a couple weeks maybe but had to stop yesterday cos the pain is so bad now I don't want to go near the area. FYI the other meds I have been started on are azathioprine (imuran), iron supplements, calcium supplements, pentasa and the enemas which I have recently stopped. I started on a low residue diet about a week ago. I am still having anywhere up to 20 bowel movements a day, barely sleeping and in severe pain at times in my rectum to the point where I am crying and screaming. I have only had very little blood on the tissue at times. I know the medication takes time to work but is this normal? This pain? Does anyone have experience with proctitis? Please help me I don't know what to do. I feel like this flare up will never end and I want to give up but there is no escaping this. A small side note, started getting weekly blood tests because of the imuran and got a call this morning to say I need to go for an emergency blood test tomorrow because recent blood work showed my potassium levels are low. So that's another thing. I just feel like I am not getting better and I am so worried that no medication can help me. My 21st birthday is also in two days time which is pretty depressing but oh well. Anyway thank you if you read any of this and any advice or questions are welcomed. Thank you!!!!!!!!

Thank you so much for your reply. I will definitely discuss some of this with my gastroenterologist. I forgot to mention that I was on IV antibiotics whilst in hospital just as a precaution. They started me on them even before having the stool tests done. So maybe that rules out the C. Diff?

Okay I'll definitely look into getting those tests done to be sure! Thank you for all you advice, it's been very helpful. Glad to know I am not alone in this. This site has been so informative and I am glad to have found it!

with 20 liquid bm a day, you anal area could just be raw. while a fissure or other defect is possible, it may just be raw. You can try creams with numbing agents. Dibucaine works well for me.

I agree the c.diff testis important. When there is no response to steroids, that is my 1st thought.

Low potassium is likely just a result of too much D. With Imuran it is the liver enzymes that really have to be watched. There are also blood tests to tell if you are at a therapeutic level of the Imuran. Ask for that.

The iron supplements can cause GI distress. Given you are having so much symptoms, I would ask if you could get an IV iron infusion instead. You do not need anything adding to your symptoms right now.

You could also try small doses of Immodium, but be very careful since you have a history of blockage. As long as you are passing loose stool or D you can be fairly sure the Immodium is not harming you. But if you ever went a day w/o BM, you should stop immediately.

good luck

When hospitalized for a different disease I left with c diff. We thought it was my uc flares causing the horrific painful awful smelling diarrhea but two days out of the hospital it was still going on and I screamed every time I went to the bathroom. When I called my GI to tell him what we were doing for my uc wasn't working he laughed and said it was probably c diff and I would need to be tested for it. The very same GI who said there was absolutely nothing like a prescriptive suppository for rectal pain but my PCP willingly prescribed one.

Hi girlwithguts,

Your story was heart-rendering. I am sorry your docs brushed it off so long! I wish you a speedy healing, to be back on your feet soon. I am new here too because of a recent flare (after 2 years of remission, and without meds). It's pretty astounding that there isn't a commonly known easy fix for UC. Well, I'm determined to find it, and here's what I know thus far:

I have tried the SCD diet, which does help, but its so rigorous and it leaves your mind somewhat foggy. I couldn't concentrate at work the way I need to.

I have tried Jini Patel's "Absorb Plus" elemental shakes, combined with her other protocols (she healed her Chron's). Seems to be easy food for me, and it gets me through the day. There's mixed reviews about it though.

Also happy birthday!!