I have ME/CFS, late stage Lyme disease and chronic Bartonellosis. And now, UC as well. As you can tell, I am not that lucky. I was diagnosed with UC (14 Nov 2013) following a colonoscopy.
Some more about me:
I live in the UK and I’m very sick. I’m 32. Male. Married with a wonderful two year old daughter and I am so disabled now that I don’t get out much or have a very interesting life. But if I get well enough I’m going to be a writer.
Bleeding. Frequent, loose bowel movements. Tenderness. Plenty of mucus.
It’s Like Hair Mousse, But it Goes Up Your Butt!
So a couple of months ago I started passing blood and then my bowel movements became a lot looser. Prior to this I had been passing mucus for a couple of years, but as I have ME/CFS and bowel issues are common in that illness, I just put it down to that. Now, I wonder if it was related as well. Does anyone know how long you have UC before you start noticing symptoms?
Anyway, I went to my GP and he said it was probably just an internal hemorrhoid, so he prescribed me some suppositories but they didnt make it any better. I went back and saw another GP (I’m in the UK so have to attend sit-and-wait and see whoever is available) and she thought it sounded more serious than hemroids, and referred me to a gastroenterologist. A couple of weeks later I saw the gastro and he said my symptoms sounded pretty serious and I needed a colonoscopy. He said it was probably crohn’s (which my mother had years ago) or UC. And so a couple of weeks after that I went and had that done, and that was yesterday.
In the UK they just sedate you, they don’t give you a GA but I didn’t notice any sedation and felt completely lucid the whole time, and I remember it all which normally you don’t. This didn’t surprise me though because drugs often don’t work on me. But it actually wasn’t that bad. Sure, it wasn’t my idea of fun, but it wasn’t painful except for the trapped wind you get from it, which in my case post-procedure was actually pretty bad and my blood pressure dropped a lot. I was told it was because I had so much air that it was pressing on a major nerve. Sounded a bit dubious to me, but once I passed the wind it got a lot better, so perhaps they were right.
As I was awake I got to see the whole thing on the sceen and the doc talked me through it all. Basically, my upper bowel is ok, as is the bit of the small intestine that he could have a look into, and my rectum is ok too, but the sigmoid area for about 20cm is very angry looking. Swollen, red, bleeding, pus everywhere, lumpy. Not good at all. He took biopsies from there but also higher up as well. It’ll be a couple of days yet before I get the results of the biopsies, but he said he is almost certain that it’s UC.
My family are very supportive, and my sister-in-law even took a day off work and drove me to and from the procedure, so that was very nice of her.
As well as UC, I have ME/CFS but also late stage lyme disease and chronic bartonellosis (a common Lyme co-infection which is even worse in many respects). Trying to treat all these diseases is hard and I am very disabled and tired now. But I am trying. I have been on anti-biotics and some supplements including lactoferrin, strong probiotics and berberine, for Lyme and Bartonella for around 6 months now so one question I have is whether there is any link? Could it have triggered the UC in some way?
I think it is interesting to see that there are some studied and current trials of Rituximab for UC – a drug which is also being trialed for ME/CFS and looks very promising indeed for that.
I’m starting to think about diet. I read that grains are bad, but does this include oats? Because of my ME I have food intolerances so I already cannot eat gluten, so wheat is out, and I can’t eat corn either. Dairy, eggs and alcohol are also a no go area for me for the same reason. So I think I may struggle a bit if I have to cut much more out!
I’ve been prescribed a mesalazine foam which I am supposed to spray up into my colon. Nice. Tried it last night but couldn’t hold it in. I will try again tonight. It’s just like hair mousse, even the sound the canister makes!
written by Joel L
submitted in the colitis venting area