I am new here having finally been diagnosed with Crohn’s Colitis having previously told it was Ulcerated Colitis

[gmm55]

A belated Merry Christmas everyone. I have finally had it confirmed that I have Crohn’s Colitis but am struggling with a very bad flare up which, so far, has lasted nine weeks. My GP doubled my medication to 4800 mg of Octasa (Mesalazine) a day but, after two weeks, it doesn’t seem to have had any effect. I saw the Consultant earlier in December who wants me to consider being put on Azathioprine. I have read up on this drug but it seems to have lots of side effects. Could someone give me some advice? Does it help my condition and worth the risks? Any information on Azathioprine or Crohn’s Colitis would be appreciated.

[DWalker]

Merry Christmas to you too ,So Sorry to hear you’re suffering .

I can’t comment on the medication but

just wanted to tell you how my crohns ( and rheumatoid arthritis) has been controlled for approx 10 years without medication .

I saw a really good nutritionist who helped with foods that helped calm my gut and those that worsened flare ups . I still have a bit of irritable bowel ( esp if I overindulge with chocs ) but it can be managed with diet and I take probiotics and prebiotics ( especially if it starts playing up )

I also discovered my vitamin D level was at rock bottom . ( don’t know if this was cause or correlation or both ) . If you haven’t already , I would urge you to get this checked up as if your levels are low the GP can start you off on a larger loading dose to bring your Vit D level up more quickly than by just taking normal supplements alone .

God bless you and help keep you safe and well.

[gmm55 in reply to DWalker]

Thank you so much for replying to me. It means a lot to me. I have taken your comments on board. I will also ask my GP about a blood test for Vit D deficiency. It’s interesting that you mentioned you suffer from rheumatoid arthritis. I had a big problem with my wrist and elbow during this current flare up. Mr GP has referred me to a Consultant for this. However, my Gastroenterologist Consultant was adamant that there is no correlation between Crohn’s Colitis and rheumatoid arthritis!!!🤨 I’m so pleased you are able to manage your problems without medication and hope this continues. Keep well, stay safe and let’s hope 2021 will bring some relief, happiness and good health to the World.

[misty14]

Hi gmm

I'm sorry to read you seem to have been put thru it having had your diagnosis changed to Crohns colitis. I had no idea that it's a possibility of having both. I've had mine 10 years and I'm still learning about it as I must admit mine has changed slightly symptoms wise.

I have U.C and have also had a long flare due to covid stress I feel and this is probably what's happened to you too. How long is it since your diagnosis was changed?. That's all an added stress too.

I just wanted to reassure you about Azathioprine as I was put on it and it helped me so much. My condition improved greatly. It's a drug as you know that has to be monitored as it can affect your blood cells but when you start it you have fortnightly bloods for a couple of months and if ok you go to monthly and eventually if really stable it will be 3 monthly.

You can have arthritis as an extra with these conditions so that's maybe what's happened and Aza will help that too. It's a big step I know but hopefully it will be so worth it.

The Crohns and colitis website is a good source of info too.

Hope your keeping safe and you will be better soon. X

[gmm55 in reply to misty14]

Hi Misty, thank you so much for your really helpful reply. It’s a bit scary knowing you have a lifelong ailment like this. Interestingly enough, I was originally diagnosed with UC back last December 2019. It was early December this year that the locum gastroenterologist consultant diagnosed me with Crohn’s Colitis. I have been under a lot of stress and anxiety related to COVID-19 as my husband and I were locked down in our holiday home in Egypt from March to October when we were only finally allowed to fly through the UK (that was scary) back to the Isle of Man. Here we are very fortunate that we are COVID-free in the community so life is pretty “normal” except the borders are firmly shut to non-residents except key workers who have to quarantine for 14 days on arrival.

Very pleased to hear that the Azathioprine has really helped you. I definitely need something to relieve this flare up as it’s dominating my life at the moment. You have given me the assurance I need and I am very grateful to you.

Thanks again for your help. Keep well and stay safe wherever you are x

[misty14 in reply to gmm55]

Thank you gmm for your lovely reply. You certainly have had a very stressful time thanks to covid 19!. You must be so relieved to be back home safe and covid free. What an awful experience!.

There are lots of other ways to treat your flare up like a short course of steroids. Azathioprine is a longer term option which can take up to 3 months to work. It sounds like you could really do with both at the mo. Hope you've an appt to discuss it all soon.

Its not easy either dealing with locum gastro consultants. Ive had to do similar this year and keep explaining things to each different doctor. So wearing!.

Im glad ive helped you make a very big decision. If you'd like to ask any other questions please do and ill try to be as helpful as possible.

Keep safe for a happy new year. Xx

[JayDT]

Hi gmm and Merry Christmas to you too. We are just about still in Christmas week so it counts. I'm in exactly the same position and I've been agonising over should or shouldn't I start Aza. I should be starting on the 4th Jan and I have all the blood forms ready to book the weekly tests. Quick background, I'm 42, single parent and civil servant. I was diagnosed incorrectly with IBS at 31 and only Diagnosed with Crohns colitis after a colonoscopy 2 years ago when I went to see a private Dr. At that time it was mild but flares and urgency were increasing. I can live with cramps and the moderate joint pain (incorrectly diagnosed as sciatica) but I couldn't cope with the urgency. Anybody that's been through it knows this is not nice and takes over your life, not an option for me being a single parent and stressed out civil servant! so I agreed to start Asacol which is the same as Octasa but a different brand. I did really well on this until Oct 19 when the GP said I was moving to Octasa. She said it was the new protocol mainly because it's cheaper but this was a bad decision. People will say they are exactly the same drug and that wouldn't cause a reaction but I flared up straight away and I've had an ongoing flares since. I had IV steroids in Feb and I've just completed an 8 week course of prednisone. I'm not 100% but I'm managing and there's no urgency but my latest scope and histology tests are saying severe active inflammation. It's then the consultant prescribed Aza. I'm worried I'll catch every bug my son brings back from school, he only has me so I can't afford to be hospitalised or out of action. I'm also worried about covid and will I beable to have a vaccine, nobody is giving me any info about that and I'm also stressing that I might be over thinking all this because I do have a tendency to over reflect. The Dr has reassured me it's a low dose and will not completely switch off my immune system and the weekly blood tests should keep me in check. I suppose this is about weighing up the odds and unfortunately we are stuck between a rock and a hard place because our condition will never be cured. I've also increased Vit D and that's definetly making a difference. Diet is crucial too. It doesn't cause the problem but can make it worse. I'm not sure these ramblings help but you're not alone in this and it helps to talk. Whatever we decide lifestyle changes are required and others need to understand that.

[gmm55 in reply to JayDT]

Hi JayDT. Many thanks for sharing your story with me - it is very much appreciated!!! I saw my GP again this week and he has put me on 30 mg per day of Prednisolone (steroids) for seven days in the hope that it will calm down this flare up. He has also emailed the Locum Consultant requesting him to expedite my next appointment (I’d just received one in the post for 7th September 2021!!!) or advise my GP as to what course of action to take. My GP has explained to me that he is not authorised to prescribe me Aza; only the Consultant can do that. So, it’s a waiting game. I do understand your anxiety over taking Aza, particularly with being a single Mum. However, your GP and/or Consultant will, no doubt, closely monitor you until he/she is satisfied that it suits you. I’m trying my best not to overthink things but I know it can be hard not to. If Aza suits us we will start to feel better and lead a more normal life and what a bonus that would be!!! Please let me know how you get on and try and have a Very Happy New Year and a healthier 2021. Keep safe x

[JayDT in reply to gmm55]

Hi gmm with much arm twisting I've started the Aza. I'll let you know how it goes. I have to say I was surprised your GP has prescribed Pred just for 7 days with an immediate taper? I'm no Dr but I have been on / off steroids for a year and they don't work that quickly for me and if it's a severe flare you'd normally have them through IV initially to give you a good hit followed by tablets and a longer taper starting at 40mg reducing by 5mg weekly. I hope it works but 7 days seems too short. if it doesn't work go back don't be fobbed off. Also at anything above 20mg steroids for a sustained period you're in the higher risk category for covid and should technically shield because they too inhibit the immune system. Stay safe.

[gmm55 in reply to JayDT]

Hi JayDT, thanks for your message. Good luck with the Aza and do keep me posted as to how you get on. With regards the Prednisolone, I saw my GP yesterday as I had had no improvement in my symptoms after two weeks of taking it. He has now prescribed me another steroid called Budesonide which he explained works differently in that it is not absorbed into the bloodstream but targets the intestines and bowel. He wants me to give it two weeks and then report back. He gave me some good news about an appointment for the Locum Gastro Consultant in that he, the Locum, has instructed his secretary to make an appointment for me to be seen within four weeks. Hopefully I should receive a letter any day now. Fingers crossed that you are tolerant of the Aza and start feeling some benefit soon. Stay safe.

[AsitS]

Hello, I am currently in the Netherlands. I have UC for the last 12 years and i was on ASACOL (mesalamine) and had absolutely no problem till Oct20. but then the flare started and continued for 2 months. what a terrible period. I went through colonoscopy and it was told that I have severe inflammation in the large part of intestine. Doctor first prescribed beudonoside which I took for 2 weeks but no positive effect so they put me on prednisone 40 mg which solved the problem almost immediately. Now dose is getting reduced by 5 mg every week. At the moment I am on 15 mg.

On further consultation doctor said for maintenance ASACOL will not work can lead to frequent flare up so I was also asked to start with AZATHIOPRINE. Its 4 days already and so far it is going fine except some joint pain.

I am also scared of side effect of this medicine and will be consulting other doctors as well.

[gmm55 in reply to AsitS]

Dear AsitS, thank you so much for your message. I really hope that the Azathioprine continues to work for you! Because it is still the Festive Season, I have had no word from the medics yet, but I live in hope. So far the 30 mg of Prednisolone has not helped but I have three more days before, I too, reduce my dose to 5 mg per day. We need to stay feeling positive 🤞 A little late but I want to wish you and all the lovely people who have responded to my original post a Very Happy and, hopefully, Healthy New Year. May the World be a better place in this new year of 2021 xxx

[Jmiller623]

Hi gmm. Sorry for your troubles. Crohns can really effect your quality of life. My mom has it and is well controlled. Remicade was her life saver but she had to stop once she started getting herpes zoster reactivation/vestibular neuritis. Now she takes steroids as needed and budesonide (steroid for the gut only). I’d ask about adding budesonide. Interesting they want to try azathioprine instead of remicade or a TNF inhibitor. Maybe because TNF inhibitors tend to make some autoimmune disorders worse like lupus and psoriasis.

I’ve tried azathioprine for my lupus but had liver toxicity from it. I thought it was working well until it wasn’t. Most people tolerate it pretty well with nausea and diarrhea being the 2 biggest side effects. Make sure they check your TPMT levels before starting. If levels are too low, chances of azathioprine toxicity increase.

I don’t know if I’d jump on the azathioprine bus. I’d probably ask about other options esp if your doc is set on starting you on azathioprine without discussion. Usually means they don’t know the answer so I’d find someone that does. If he can convince you it is the best option after discussing others then it’s a good chance that it’s the best therapy for you. All about weighing pros and cons which can be difficult for us since we are so complex.

Happy New Year!!! I sure hope you find some solid relief soon. Nine months of a Crohns flare is pretty darn rough. Sending you hugs. ❤️xx

[gmm55 in reply to Jmiller623]

Dear Jmiller623, thank you so much for taking the time to send me a reply, it is much appreciated 🤗 Funnily enough, your username is the same surname (family name) as my maiden name of Miller - coincidence hey? I have taken your comments on board. I have had a TPMT test and my GP tells me that I am well in range to be able to tolerate Azathioprine. However, I will certainly ask him about trying budesonide. Thank you for that suggestion. Yes, the whole thing is a balancing act. All I want is some sort of relief from this darned flair up. It’s taking over my life and, to my utter horror, is making my dear husband ill with worry 😥 I am not sleeping well at all because of the need to run to the bathroom. He doesn’t sleep well because most of the time he gets up and finds me wide awake - a snowball effect ⛄️

Talking of bed, I must close now and try and get some sleep. Wishing you a happy and healthy 2021. Stay as well as you can and keep safe wherever you are 💗

[Beti_gh]

HiI had behcet since 25 years ago and just 2 years ago my symptoms came back with sever abdominal symptoms and canker sores in my colons

I have been taking Azathioprine 100 mg a day for 2 years and just recently lowered the dosage to 50 mg

It wasnt easy at the beginning with sever abdominal pakn and feeling sick but i went through it

One think i learn is to take it right before taking food 10 min before having a big meal can help tremendous lowering the abdominal discomfort

I also take otezla since 8 months ago which cleared all my canker sores

Its been amazing for behcet however my stomach is acidic most of the time and It doesnt feel good . I feel sick sometimes so i have to take omeprozole or something like that

Hope that helps

Good luck and please take care