Just been diagnosed with UC

A couple of months ago I started passing a little 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 hemroid, 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'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!

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 intollerances 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!

No hard data on this but if antibiotics triggered your UC, which sounds likely, then it makes sense to use probiotics to try to restore healthy gut flora. UC seems to be caused by different triggers in everyone. If you know what that trigger was in your body, that might well give you a leg-up in the fight against UC. I believe my UC was triggered by poor diet and surprise, surprise, dietary changes seem to be effective for me (which also may well have something to do with gut flora, although probiotics didn't seem to help much in my case).

UK,

Welcome to the forum.
IMO, these could certainly all be related. I'm not sure I could tell you how exactly.
There are other members who have reported struggling with Lymes and UC, and antibiotics as well.

You're doing probiotics already, which is great. Definitely VSL#3 is excellent, and I would suggest adding: S. Boulaardi as well.

There are other things you can do, diet modification which you are already doing - good for you!

I'll share with you what's helped me, and hopefully it can help you as well.

Some meds work for some and not for others.
For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with worsening its symptoms!

I found that by doing these things it helped control my symptoms by 75%:
1) adequate high intake of vitamin d3 ( need to get your levels checked first)
2) probiotics are key, and you're already on those
3) slippery elm powder to coate the intestinal tract helped greatly
4) l-glutamine amino acid powder for long term colonic repair
5) food combining
6) diet modification as in gluten and dairy free, Paleo diet
7) rectal meds help lots of folks out


The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission.
If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.
I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone. BTW, LDN has been shown effective with Fibromyalgia, and I think CFS (?).

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

UK,

My pleasure.

How high were your vitamin d3 levels?

Good he'll be testing kidney and liver functions too.

Let me know what he says about prescribing LDN for you.
And BTW, if he does prescribe it for you, there are different variations with fillers, types, etc...
Based on my experience I would recommend either oral LDN with sucrose filler ( no other fillers), or transdermal LDN. Just thought I'd give you the heads up.

I went back and saw another GP (I'm in the UK so have to attend sit-and-wait and see whoever is available)

No you don't.

If you want to see the same doctor every time, you make an appointment with that doctor. Might have to wait longer, that's all. I've been seeing the same GP for about six years.