It’s Like Hair Mousse, But it Goes Up Your Butt!

recent picture of me

recent picture of me

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.

Symptoms:

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!

Medications:

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

5 Responses to “It’s Like Hair Mousse, But it Goes Up Your Butt!”

  1. MattNovember 26, 2013 at 2:46 pm #

    Hi Joel.

    I ‘got’ UC in 2004 when, inexplicably I went down with pancreatitis, jaundice, a bile duct stricture and UC all in a couple of months. Prior to that (and now) I was healthy and active. I spent a couple of very miserable years being passed around and trying all sorts of treatments

    Finally a doc (NHS all the way) tried me on Infliximab and it’s turned it around overnight. I’ve had the odd flare but all have been manageable and I’ve not had to leave work. I’ve been on Inflix for about 7 yrs now.

    The reason I thought I’d comment is that, like me, you seem to have a lot going on and I think my UC is just another symptom of something that the docs can’t spot rather than a stand alone problem.

    The only drawback with the xxxxmab range of biologic drugs is that they do a great job on your immune system so when I catch a cold, it’s force 10 and stays with me for weeks. Small price to pay for a relatively normal life though.

    Hope you find a solution bud.

  2. MattNovember 26, 2013 at 2:48 pm #

    PS – the ass-foam gets easier! :)

  3. Joel L
    joelNovember 26, 2013 at 3:11 pm #

    Thanks Matt. Yes, I have a lot going on and it’s interesting to hear your experience of Infliximab. My TNF-a was very high when I began treatment for Lyme and Bartonella earlier this year – though this came down significantly to normal at my last test in August. I have new tests in two weeks (results take a couple of months though).
    If they are high again I will be pointing them out to my gastro. Although these biological drugs are severe in their action, my immune system is dysfunctional anyway. Until I began treatment I was immune to colds and flu. That sounds odd, but it’s true. For years I could not catch one. I think because my immune system was always on on full power. But since treatment I have had two or three bad colds including one right now which is a nasty one. And having seen what Rituximab can do for people with ME/CFS I know these drugs, although fairly drastic and with side effects, can be really positive, just like your experience has been.

    I got on better with the Salofalk foam after a few days, but then after a week my GP put me on a cheaper brand – Asacol which has loads of addatives and my bowel objected to these strongly so I have been taking Salofalk liquid enema for a few days until my surgery can sort out a new prescription for Salofalk foam for me (long story, but they messed it up) which I cannot wait for as the liquid enemas are ok, but not as easy to live with as the foam. I have had no blood since my colonoscopy, but my bowel is still far from being right. I need to keep on a regular treatment for a few weeks I think and hopefully things will be ok. I am also now on Mesalazine tablets 2x4g a day.

    Thanks again!

  4. bevNovember 26, 2013 at 4:18 pm #

    Well, Joel, there is most definitely a link between UC and the use of antibiotics. I assume that the antibiotics used to combat lyme disease are quite strong.

    Over the years, my use of antibiotics are partly what I think led to my getting UC.

    I am happy to hear that you are on a strong probiotic. Never stop taking that. The antibiotics can wipe out the good bacteria that we are supposed to have and some of us are more susceptible to that than others. One thing….make sure that you always take the probiotics on a completely empty stomach, and then no eating or drinking anything other than water for at least half of an hour, but an hour is even better. That will enable the probiotics to really do their best!

    Cheers,
    Bev

  5. Graham from England
    graham leeNovember 27, 2013 at 2:45 pm #

    Hi Joel,
    Sorry to hear about your list of illnesses, I’m also in the UK and feel your pain with the waiting! The IBD part of the NHS is seriously overloaded so I believe you are 100% correct to work on helping yourself. Your UC sounds to be in the same area as mine BTW.

    Smoking kept my UC quiet for years but then I couldn’t do that forever. So I gave up yet again and had a great symptom free year+ on Extra Virgin Olive Oil. Eventually the signs appeared so I was put on Asacol suppositories, 2 months later I had a serious reaction which docs said caused a minor stroke (Folate deficiency). With the cocktail of drugs you must be taking I urge you to keep going with all things natural and not rely heavily on the meds. Many here find diet and supplements really help despite most doctors opinions to the contrary. Let thy food be they medicine and thy medicine by thy food (stole that one).

    Best of luck mate!

Leave a Reply