Single mum of one. Crohns for 13 years. Hi!

[finallyawake]

So I thought I'd introduce myself.

I'm 32 and have had Crohns since 2002. I was 20. I was diagnosed after I went to the gym for the first time in maybe ever, and developed DVT's in both legs. I'd obviously had symptoms for a long while before that but had written them off as being down to my bad diet or uni lifestyle. Obviously that experience has put me off exercise ever since!

For the first 5 years I was pretty much asymptomatic. I was put on azathioprine and asacol from the get-go and pretty much stuck to it (after trying pentasa and 6MP) along with the occasional flagyl course for the first 3 years. For 2 years I was entirely unmedicated, and during that time I had a successful pregnancy.

After my son was born everything went catastrophically wrong. I've had psoriasis since I was a baby but its never been more than the occasional spot. After I gave birth my psoriasis went mad, as did my crohns. I ended up losing nearly 1/3rd of my bodyweight and it took a long time on steroids to get back to normal. Ever since my psoriasis has always been a very good barometer of what my crohns is doing. It tends to flare at the same time.

Recent colonoscopies (Well, the last was 2 years ago) have shown that I have pancolitis crohns throughout the entire colon and that it is apparently severe. I am still on the azathioprine and asacol, although I have dropped the azathioprine recently. I have some gyne issues that are really getting me down and I seem to have decided its all the azathioprines fault.

Family wise we have a history of gastro issues - bowel cancer, potentially undiagnosed crohns, coeliacs going back 4 generations. My younger brother also has crohns and has fared a lot less well than I have.

So that's me. Hello!

 

[David]

Welcome to the community.

That you have severe pancolitis and are only on Asacol is extremely concerning to me. Has your doctor brought up the idea of trying a biologic?

All my best to you.

 

[finallyawake]

They have, many times. I guess I was diagnosed back in the days when infliximab was seen to be for really severe cases, so I've always been wary of the biologics and favoured what has worked in the past.

I'm now a good 2 months Azathioprine free, and touch wood, no flare. My psoriasis is going crazy though, which it was clearly keeping in remission.

I have a colonoscopy booked for next week and my GI is aware of my desire to stop immunosupression. He seemed 50/50 on whether I would be able to do it or not.

I think I need to take this disease and it's treatment more seriously, to be honest. I've been burying my head in the sand for years.

 

[24601]

I'm concerned about you only being on asacol too. I understand where you are coming from about being influenced by the early ideas surrounding infliximab - the idea that it was only indicated for the most severe cases and also the concerns over risk. But in the last 15 years or so those ideas have changed so much with studies showing the benefit of using biologics early in the course of the disease and the risks have been shown to be much much lower than was once thought.

I'm sure you know that the consequences of uncontrolled or undercontrolled Crohn's can be severe and that it is better to prevent a very severe flare or complications rather than to treat them. It's not easy facing up to that reality but I hope talking to people on the forum with similar concerns might help you make the right decision for you :ghug:

Good luck! Let us know how the colonoscopy goes!

 

[David]

I agree wholeheartedly with 24601. If I had severe pancolitis I'd be on Remicade.

 

[Tuff]

Because of my fears, I put off going on Remicade for two years. My condition got worse and worse, because the meds I was on was not healing my colon. My fistulas healed in a month on Remicade, I wish I had started it sooner. My last colonoscopy showed that my rectum was a mess. I was afraid that I would lose it, but upping my Remicade seems to have healed it. I'm going to have a scope eventually for my GI to see how it looks, but I think it's ok. I would rather have Remicade than surgery.

 

[David]

Tuff, I notice you're on Warafin. Is its' use somehow related to the Crohn's?

 

[Tuff]

I was diagnosed with Crohn's after I almost died of massive pulmonary embolism. IBD patients have a threefold increased risk of developing DVT or PE. I'm going to be on blood thinners for the rest of my life, which has its own risks.

 

[finallyawake]

My CRP levels have quadrupled in the last 3 weeks and my colonoscopy was rescheduled to who knows when. I have therefore restarted imuran today. My gastro did tell me I had a 50/50 chance of being able to come off it. It's just so hard when its helping one part of my body but hurting another. Plus after 13 years it was SO nice to not lose handfuls of hair in the shower and be able to go out in the sun without burning in 2 seconds.

I have to be sensible though - like you guys are saying, this isn't the kind of disease I should be messing around with. Thanks for the reality check. I'll talk to the gastro about remicade next time I see him.

 

[24601]

Sorry to hear you're doing worse

Are you going to do a course of steroids or enteral nutrition while you wait for Imuran to get to therapeutic levels?

Hope you can get on a treatment that gets you properly in remission. It sounds from your previous colonoscopy that things weren't looking good even on azathioprine so it certainly sounds like Remicade or Humira would be worth trying for you. While using an immunomodulator like Aza in combination with a biologic is useful to prevent antibody production, there are studies that show that the most benefit is gained by using the immunomodulator for the first 6 months - so you might be able to come off Aza after that time period and avoid the hair loss and photo sensitivity. It might also be possible for you to try methotrexate instead of azathioprine.

Best of luck. Let us know how you go :ghug:

 

[Honey]

Hi there and welcome, Wishing you well again soon. I was reluctant too to go on Remicade but I had to go for it, and it worked. So I hope you find the right treatment that helps you. Best wishes.