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Crohn's Disease
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Posted 12/18/2020 10:23 PM (GMT 0)
Hello,

I have crohns in the terminal ileum and take 50 mcg azathioprine per day.

I have been feeling slightly off every few months throughout the year. I don’t know if it’s because I put weight on and my blood test showed my azathioprine levels were a little low.

Monday evening I ate steak for tea and don’t know if that was connected to me waking up in the middle of the night in agony. I then had two days of intermittent waves of pain which subsided on the third day with two episodes of diarrhoea. While the waves of pain have stopped I still feel like crap and have struggled to eat and work and feel bloated and aches/pains. I suspect a partial bowel obstruction.

The issue is my blood tests are perfect and my fecal calproctectin result was 21 - the lowest it has ever been (generally in the 60s though it’s only ever been over 100 twice). I am really confused based on this what to do. Is this episode inflammation related? To my knowledge I don’t have scar tissue though I did have a resection 9 years ago.
Posted 12/19/2020 1:03 AM (GMT 0)
If you've managed on only 50mcg's of Aza for the last nine years, then you've been doing really well. Your dosage does sound low, and am surprised you haven't been on any other maintenance meds along with it. Might be time to consider a biologic.

Before all of that though, the best thing to do would be to get some updated diagnostics done. An MRE is the least invasive, but you might want to get a lower scope done as well. As for your symptoms, it could very well be an obstruction. You could have narrowing due to inflammation or scarring, even scarring at your anastamosis.

In the meantime, you might try a low residue diet. Give your system a rest. More fluids and supplements like ensure or boost for a couple of weeks. Considering the time of year, along with the virus going on, you need to get things rolling sooner than later. Good luck, hope this is just an anomaly, and you get to feeling better soon. Keep us posted.
Posted 12/19/2020 8:54 AM (GMT 0)
Thanks, I was misdiagnosed with perforated appendicitis when I had my op and so was on nothing until 2016. I was then diagnosed and it was discovered actually a crohns ulcer had perforated before. I went on 50mg azathioprine in 2016 and that’s it.

I’m in the UK so treatment with a biologic could take months to approve and then would only be temporary. I did go on 75mg of azathioprine for 6 months but it caused my white blood cell count to slip too low so I had to drop back down again. I will ask for an MRE. I get married in June hopefully so want to avoid a scope until after then if possible.
Posted 12/19/2020 9:55 PM (GMT 0)
Pain ramped up so I took myself to A&E and an X-ray showed my bowel to be inflamed I think the edge was thickened? And I think gas was stuck. I think I’m going to be here for 24 hours and receive steroids. Just feel worried what this means for my treatment I know the UK only fund biologics temporarily and once you are well they are withdrawn. Maybe they could up my aza dose instead.
Posted 12/20/2020 12:55 AM (GMT 0)
A course of Prednisone may certainly help you. Be sure if taking it for more than a short course, to follow the descending dose for the full 8 weeks. Are you sure about the use of anti-TNF's in the U.K.? It would be very counter productive to only offer them for a short time, as you can build antibodies which would prevent intermittent use. They are meant for long term maintenance only. Something to check into further. Once again, hope you're feeling better soon. Further diagnostics will tell you much more.
Posted 12/20/2020 3:55 AM (GMT 0)

eleanor_rigby said...
Just feel worried what this means for my treatment I know the UK only fund biologics temporarily and once you are well they are withdrawn. Maybe they could up my aza dose instead.

Not at my hospital - you can stay on a biologic for years. You need to look for a new hospital if your one will only give you biologics short term. Don't know what area you are in - if it's the southeast/London I can give you a couple of suggestions. A general rule of thumb seems to be that teaching hospitals are better funded and thus more likely to fund expensive meds like biologics.

That said, now is just about the worst possible time to be applying between Covid and Brexit. But what else have you got to do? Might as well kickstart the process at least.
Posted 12/20/2020 9:03 AM (GMT 0)
Thank you. The other issue is that I had optic neuritis in 2007 putting me at risk of MS so have read I shouldn’t have the anti - TNFs, I’ve also read entivro takes ages to work and I don’t feel like my bowel wants to wait around. That only leaves stelera? Not sure whether they would go straight for that. Do you think upping my aza dose could work? I felt pretty good on 75mg but my white blood cell count dropped so i went back down to 50mg. Could combine with Allopurinol?
Posted 12/20/2020 11:19 AM (GMT 0)
Upping the Aza would certainly be worth a try. Even with the risks you mentioned, I would strongly consider a biologic. Stelara is getting very good reviews. Even rivalling Remicade now. Hopefully you get the imput you need to make the right decision going forward.
Posted 12/20/2020 1:31 PM (GMT 0)
I would be happy to start stelera. I don’t think my mental health could cope with an MS diagnosis on top of crohns. The only thing I enjoy in life is hiking and going on holiday and if they were taken away from me I couldn’t cope. So remicade would be an absolute last resort for me.
Posted 12/21/2020 3:39 PM (GMT 0)
Optic neuritis is beyond my paygrade. Seems to me that's something you would need to talk to an MS specialist about - I don't think a GI is likely to know a lot.

You could try asking about an AZA + allopurinol combination. Alternatively, you could switch to 6MP - 50mg of 6MP is roughly equivalent to 100mg of AZA and may work as well without hammering your white blood cells. And while you're waiting, in the meantime you could ask about trying a course of Entocort. (Generic name: budesonide.) It's a topical steroid, so safe to stay on for a few months.

Good luck - I hope you find a med combination which works.
Posted 12/22/2020 12:24 PM (GMT 0)
Thanks so much for your advice! I’ve been transitioned to budesonide since yesterday and awaiting my MRI scan tomorrow hopefully afterwards I might get discharged! I did have a really good Colonoscopy after a year of AZA so maybe fiddling around with it and your above suggestions could put me back into remission.
Posted 12/24/2020 6:08 PM (GMT 0)
Just an update - my MRI was normal! No thickening, no narrowing, no fistula, no active Crohns apparently! Not sure how the MRI could be normal with no active Crohns and an X-ray ray 4 days earlier showed thickening/inflammation? Did the steroids work so well?
Posted 12/25/2020 1:28 AM (GMT 0)
The MRI is far more definitive than a regular film xray. My first thought is the quality of the xray that was done too. Prednisone can kick in pretty fast, how are your symptoms?

I hope you are feeling better.
Posted 12/25/2020 8:31 AM (GMT 0)
I had IV hydrocortisone so I suspect that kicks in either faster than pred. Still bizarre though. I’m feeling load better and can eat normally and function again. I was discharged yesterday after my MRI results smile
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