Crohns help - again please

[lotsofquestions22]

Hi all,
Posting again. In aibu for traffic really.

I posted a week or so again as I have crohns. I've previously been on prednisolone, azathioprine and infliximab but have been drug free for 15 months after having a reaction to my regular azathioprine. I think I'm having a flare although the symptoms feel very different to my last flare which was when I was diagnosed and trying to find a drug to work 8 years ago.

I'm paying to see my consultant monday as I cant get a nhs appointment. 8 weeks ago I started with lots of stomach cramps. It felt like strong period pains. Also worse at certain times of the month. Stomach very sensitive to anything except the blandest food. Then I passed lots of blood and it went through my trousers so i called the IBD helpline. I had a blood test and did a stool sample test. Both showed inflammation so I've been on prednisolone now for 10 days. I have a 6 week course. The cramps have died down and I don't have any panic about getting to the loo. I'd get these urgent need for the loo with lots of pain and cramps and then it would pass after 10 minutes without going to the loo.

The symptoms I can remember from my last flare are diarrhoea and bleeding. I had pain but in very specific places in my colon. My consultant said my crohns was bad when I was really Ill. I was bed bound for about 4 months whilst I tried different drugs to control it. I don't remember any cramps.

So this time the main symptoms are the cramps and they are painful. The bleeding I had was a fissure I think and anusol helped a bit then it went within a day or so of the steroids. I have no bleeding now and haven't got diarrhoea. I go to loo once or twice a day. My stomach is still very sensitive to lots of food.

So I'm not sure what to expect or ask when I see my consultant Monday. Will I likely just finish the prednisolone course, I have just over 4 weeks to go but I'm tapering down, or should I be asking for another maintenance medication like azathioprine?

If I ask for another maintenance medication what are there that I can try? I'm sure the medication has changed in the last 7 years. I think it would be something not as hard core as azathioprine. What should I consider?

I always find it good to be prepared when I see my consultant so thought I'd ask around.

Tia.

I don’t have Crohn's myself but it runs in the family, so sharing based on others’ experiences.

Here, azathioprine is still a standard treatment - and can be given in addition to biologics (like infliximab). The people I know are all on azathioprine daily, I had assumed it was a standard maintenance med as a result so if you’re flaring like this it may well be worth asking for more consistent/regular medication; however it’s always been azathioprine here so I don’t know of alternatives. There are other biologics you can try however, like vedolizumab and ustekinumab; if needed. Also adalimumab (Humira) but I’ve heard this has been stopped or is harder to get now on the NHS, a funding issue.

FWIW a relative hasn’t been put on any steroids for years, the consultant team caring for them has said that it’s an older way of treating the flares and they prefer to focus on the immunosuppressants/biologics. They’re fortunate enough to live near a hospital that has a leading gastro clinic and people travel to be treated there, so hopefully they would know what they’re talking about! However everyone is different and steroids may be very helpful for you.

I would expect the doc may want or need to do a colonoscopy, to really see what is going on. Also you could ask for dietitian/nutrition support. I know FODMAP is pretty much always recommended, but more tailored support can help a lot. An elimination diet with gradual reintroduction can be really helpful, has helped my family a lot to give the gut a rest and then help identify triggers.

Hope your appointment goes well and you feel better soon

I hope you appointment goes well.

It’s really hard to advisenon meds’ as what works for one won’t work for another. It can also be dependant in type of crohns.

It does sound like you’re in a flare and the quickest way to get that under control is still treat with steroids.

With regard to food, I’d be wary of going down that route without advice from a nutritionist, even then take it with a pinch of salt, I was advised to cut out meat and eat more veg. Veg shreds my insides so that went well. The m now happily carnivorous again.

I think I said it on your last thread, it’s such an individual disease it’s hard to advise.

Speak with your consultant, make sure the notes are copied over to the NHS file (or you’ll lose continuity).

Thanks for that. I was on azathioprine for over 5 years and then started having problems with it where my eyesight started to be impacted, hair fell out and my colour changed a bit complexion wise. Once my eyesight started to have problems the consultant told me to stop taking them immediately and my eyesight then returned to normal. Personally I think it was because I was taking too high a dose. I was on the same dose for all those years and in that time I had 2 babies and my weight fluctuated by 5 stone. I was at my lightest when I had the side effects. I had asked my consultant a year previously whether I should reduce my dose and she said no. But I'm convinced that was the problem. I never had any flares on the azathioprine and managed 15 months of no medication after that before my current troubles.

I'm sure my current flare has been caused by stress because it's been a difficult few months. I had a blood test early July and all clear. Colonoscopy in march and all clear. Then within 6 weeks of the all clear blood test I'm in a flare during a stressful 6 weeks. I'm trying to exercise again as that makes me feel better to reduce the stress but not sure if I need drugs first then try not to get that stressed again!.

Maybe going back in aza would be an option as it controlled the crohns and a lower dose might be the answer. I was incredibly sensitive to the sun with it though and couldnt go out in the sun at all. I also had terrible skin on my face and the skin always looked angry. I didnt realise it was the azathioprine causing it until I came off it.

Its only been 8 weeks but I'm sick of the stomach pains and the steroids are making me put on weight and I cant sleep. I'm starting to think going back on a maintenance medication and being well would be better than trying to tackle it with steroids.

My 18yr old son has had crohns for 10 years. He is on infliximab and azathioprine. We were warned about sun damage when he was first prescribed the aza.
When he is flaring stomach cramps are the worst for my son. He gets cramps everyday anyway, but when flaring they are really bad. Have you tried Buscopan to try to help? It doesn't take all the pain away, but it does ease it.
Are you still on infliximab? You could ask for methotrexate to go alongside infliximab.
Another option would be to start humira. The problem with starting back on aza is the length of time it takes to start working, usually estimated about 3 months.

I hope that you get some help, crohns is just awful and I know from my son how bad it can be when flaring.

Hi @lotsofquestions22 sorry to hear you are feeling rubbish. Can. Recommend that you look at the NACC website? It has loads of material and resources re drugs etc and trials of new treatments. There is also a chat thing for ibd sufferers thats good for getting support.

As PP have mentioned drugs are moving in apace so I'd go,in with an open mind, be clear about your symptoms. As you are now in the private route be prepared that they may send you for scans and other tests that will also be chargeable.

shocking you can't get an nhs appointment- personally I'd have gone to a&e if it's that painful- key to successful crohns treatment is early intervention. Might also be worth going back to your gp and seeing what pressure they can bring to get you in front of your proper gastro consultant too.

I wish you luck

My mum was diagnosed with Crohn’s aged 13 and lived with it for 60 years. In the early days she had many surgeries and bowel resections as medicines weren’t so good at controlling it. She ended up with about half her bowel in the end I think and suffered many serious flare ups. Anyway my point in posting is that she could never get on with the immune suppressant medications like azathioprine and so on. She’d just become more and more unwell. What actually worked for her is taking steroids non stop at a lower dose all the time. Her one of choice was prednisolone and she took that for the last 20 years of her life at about 20-40mg depending on how she felt and managed to stay out of hospital all that time. Something to keep in mind if you do go down this road though is Adrenal insufficiency (both mum and I have / had this due to taking steroids for different things). It’s very dangerous to just stop steroids suddenly if you take them for long periods and some people (like me) will need to take them forever to survive - have a google. It’s just good to be aware of all the things related to this. Saying that the steroids changed her life. But yes she did find it difficult to sleep at times and did put on some weight. She also ate a very bland beige diet- no fruit at all and no hard veg. No brown bread or nuts or seeds etc.

I wish you luck with feeling better.

My son has had Crohn's for over 30 years. He does very well on methotrextate. He was on steroids in the early days, but these gave him osteopenia, and the long term side effects can be bad, so doctors try to avoid them.

He's found that physical exercise keeps his flare-ups at bay. He doesn't exercise if he has a flare-up. Rest seems to be the answer there, but when he is well, he goes mountain-biking regularly, and works out with weights at the gym. Since he started doing that, about 10 years ago, he has had no serious flare-ups, and his consultant is happy with his condition. There is some literature on the effectiveness of exercise for Crohn's.

He's also had a specialist gastro-enterology team looking after him for years - which you should have. If he had the kind of symptoms you describe, they would have had him into clinic just like that. I don't think you are getting the best support and treatment here, OP.

Clearly, right now, you need to get on top of what sounds like a bad flare up. I wish you well.