On and On and On and On

[mollyminer]

Hi All - Crohns Sufferer since 2009

Going through some crazy motions at the moment. Last year was hospitalized by 6-MP Mercaptopurine, reduced blood platelets resulting in 8 days of hospital treatment, transfusion of 4 units of blood, and numerous injections of antibiotics.

After coming out of hospital I was doing ok, the Crohns had actually calmed down (probably due to the 8 weeks I took off work). Back to work at the end of December and by February I had a check up and it was noted that I was suffering from Non Specific Urethritis (inflammation of the urinary tract) and was giving a course of Doxycycline (antibiotic), and then came the flare up!

So since then, I have had some right nasty pains all over the body. I had an ultra-sound on my abdominen and was told I had a mild fatty liver yet was told it'll be ok if I eat well and stop binge drinking. Fair enough! I've been on a course of Predinisone to bring my flare up under control which I have to say it did, as always, quite quickly. Literally though, and I'm not exagerating, the day I stopped the steroids I started losing blood again. The pains have intensified by my right side behind the ribs. It hurts to touch it. I have pains in my lower back and can almost feel some small thing moving around on the veterbrae. I am also getting a pain in my chest, the other day I sneezed and something clicked in my back, "Ouch".

Lastly, I've been given a low dose of Methetrexate with Folic Acid to follow a few days later. Been on this for 4 weeks now.

So this morning, my crohns appears to be flared still and had a bit of an accident which resulted in my pants, sheets and mattress needing a clean. And it was just blood...... (Sorry if that put you off your lunch)

What to do now? Any suggestions? Is the liver worse than I thought with this pain behind the ribs? Bloods showed up everything normal other than the usual inflammation markers. ALT was high but that was down to Fatty Liver. Also noted on the Ultrasound was a slightly inflammed spleen. Lots of issues and I really hope it's just the Crohns but it does make you wonder if there's something more serious going on doesn't it. I'm about to import some L.52 Hymalayan tablets which should help cleanse the liver. Anyone tried these supplements?

Diagnosis, Crohns Disease - 2009

Pentasa - Didn't do a great deal for me.
Prednisone - Works Wonders (told it cause achy bones though....)
Azathioprine - Made me sick
Mercaptopurine - Put me in hospital and nearly killed me (now doing a study regarding the side effects I had)
Methetrexate - On going treatment, double the dose from next week.
Non-Smoker, although was a smoker when first diagnosed.

 

[David]

Hi Molly and welcome Thank you for sharing your story though I'm sorry to hear you're having so much trouble

Let's pray that the methotrexate gets things under control, and fast. You shouldn't have to live like this.

Have you thought about utilizing enteral nutrition to help calm things down? Are you familiar with it?

How about your vitamin D and vitamin B12 levels, do you have those monitored? If so, what were they the last time you were tested?

I don't know about the chest pain and stuff moving around your vertebra though Have you told your doctor? If so, what did they say?

Again, welcome to the forum

 

[Angrybird]

Hello Molly and welcome to the forum, sorry to hear you are not doing well at the moment. The Methotrexate can take up to 12 weeks to start showing an improvement so ususlly when a new maintainence med is getting introduced you are kept on the pred - at a low dose if poss - so the tum is still getting some sort of treatment whilst the new med kicks in.... If you hae not already I would say you need to get a message to your GI about the problems you are having.

I hope things can improve for you soon.

AB
xx