Hello this is my story

[ScottBoyd]

Hello! I'm new here so bear with me!

I've had symptoms for about 8-9 years and was diagnosed with crohn's and perianal crohns about 4 years ago. I've been on remicade for about 2 years and things were going great until recently!

Since June (ish) I've been brought forward to every 6 weeks and had a dose doubled 6 weeks ago today(10 mg per kg).

My usual symptoms are tiredness, cramps in the colon and recently a deep setted pain behind the left buttock and the remicade doesn't seem to help that.
I've had umpteen abscesses and setons in place.

The conversation has begun about surgery and I'm expecting it in feb next year, it's a bit worrying that I've tried aza remi and pred and the only thing that seems to work is flagyls. Any other treatments that people are having?

I've never hidden my illness but I've never seen it as a problem. I accept that it's tough sometimes but I refuse to let it get me down even if I'm I'll!

Recently I've had problems with my lips and eyes. My eyes are red and itchy and sometimes cloudy? My lips are red, dry and cracked and very painful! I like food and find it difficult to eat much at the moment! Any idea how to deal with this?

 

[Ian]

Hi and welcome

Sorry to hear you're not doing so greaty anymore, Remicade unfortunately tends to lose it's effectiveness eventually for most people.

Do you know what kind of surgery they're planning for you? As for other meds, Humira is normally the next step when Remicade fails, have you discussed this with your doctor?

I'm afraid don't have any advice re: food and your sore lips, I personally haven't experienced any extraintenstinal symptoms but many others here have so hopefully someone will come along with some words of wisdom for you. There are also subforums for Extra Intestinal Manifestations and Diet, Fitness, and Supplements on here if you want to take a look, might be some useful stuff there.

Hope you enjoy the forum, if you're willing please tells us more about yourself - age, occupation, insterests etc .

 

[billyjoel]

Scott welcome to the board; I too get inflammation in the eyes, I also get strange looking bumps on my skin and I have inflammation in my joints all due to Crohn's. If my eyes are itchy and red I use eye drops called Roto drops I think, they have one for redness. I live in the US, but I am sure they are sold in the UK as well. For your lips I would actually suggest petrol jelly like Vaseline, it works really good.

 

[Grumbletum]

Hey Scott. Glad you found us, but really sorry that the Remi is failing you now :-( Have you had a look over on our subforum? A lot of folks over there with persistent fistulae and those who have had surgery for them. Have you had to take Flagyl on a long term basis?
Keep fighting x

 

[ScottBoyd]

Thanks for the interest guys,

It's a shame the remi isnt working, we discussed humira and Lthough it may be a good option the crohns seems to have deteriorated in my anus and rectum (dignity gone) but the remi seems to work for my colon which used to be my main problem.

My issue these days is mostly a deep setted feeling behind my left buttock which painkillers (tramadol 2x50ml + 2 x 30/500 co codamol and oral morphine when required) doesn't really do anything! I find sitting on a hot water bottle works a treat mind you! If I'm out I discreetly find the nearest radiator haha!

Ill tell you a bit about myself: I'm 28 years old, I own a deli/outside catering company in Edinburgh. I enjoy anything to do with Motorsport and have competed in stage rallying and some circuit stuff. I love football and rugby too but to be honest any sport with a hint of competitiveness does the job!

I was diagnosed with crohns whilst at university and it's taken it's toll at times... I have had a good few years with remi but unfortunately this is not the case anymore!

Flagyl seems to get things under control but I'm worried about the side effects, it also makes me very nauseous and it's christmas and I can't have a whiskey

I'd love to hear your experiences and I'm glad I joined this forum I hope this helps my situation as I hate worrying family/friends with my condition.

The BBC have approached me to be involved in a documentary about IBD but don't worry my girlfriend is a film producer so I will to allow it to be taken the wrong way!