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Original poster

Immunosuppressant for Crohn’s

16 replies

SetonStitchHelp · 18/09/2023 20:44

I was diagnosed with Perianal Crohn’s today and there is talk of putting me on immunosuppressants to control my symptoms. Does anyone have any experience with this? Are you ill all the time on immunosuppressants? Can you still go on holiday easily when taking them? TIA

OP posts:
UpUpUpU · 18/09/2023 20:46

I have been on them for years (not currently though). I did everything I normally did but I did pick up a lot of infections and a common cold often gave me a chest infection. It was worth it for the relief from the IBD though. I have proctitis so imagine similar symptoms to you.

LondonLovie · 18/09/2023 20:49

My husband has them. He's been on them for a long time, and I can honestly say he is more well than me and the kids!! I've had Covid more than him and the kids colds/ sickness more than him too. He takes very good quality vitamins and has a B12 injection a few times a year but honestly they don't seem to have negatively affected him.

FawnFrenchieMum · 18/09/2023 20:50

I’m on Azathioprine for Crohn’s, I have been on it around five years now. I do pick up more coughs and colds then I did before and they do hit me harder then they did but the benefits outweigh the cons for me. It’s not unbearable illnesses etc.
Going on holiday is fine, I just need to be more careful in the sun as they can cause you to burn much more easily. I am meant to wear sun protection year round and stay out of midday sun totally. I do tan much more easily as well as burn easily.

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Rainraingoawaycomebackanotherday · 18/09/2023 20:53

DH has taken them. First type gave him sever joint pain so he changed to something else .It made him a bit photo sensitive, he burnt the tops of his ears a few times in the UK but was fine on holiday. He seemed a but tired but this was over the period of us having babies/non sleeping toddlers. Didn’t seem to get illnesses anymore often but was considered to be ECV during covid which was scary. His Crohns is currently in remission.

AutumnCrow · 18/09/2023 20:53

I'm on Adalimumab for multiple auto-immune diseases, which is one of the biologics you might be offered for Crohn's. I normally inject fortnightly.

I don't find I have too many side-effects, no, when weighed up against the actual conditions. I've injected today and have lost my appetite and feel a bit woozy, but that will pass.

And tbh, when you've settled into a regime you can always miss a week or two if you need to for any reason. When the Covid vaccines first came out in 2021 we were advised to! (Not any more.) So it's flexible.

Otherwise you can get a travel box and documents.

However, as pp have said - stay out of the sun, and stay away from unwell people.

Good luck.

Windsor1o2 · 18/09/2023 21:08

Crohns patient here too. It may take a bit if trial and error to find the right immunosuppressant but once you're on one that suits you there's no reason why you can't travel (with additional insurance).

I'm not ill more frequently, if anything I'm ill less. Even covid wasn't particularly bad.

They'll monitor your white blood cells closely. It all sounds abit scary at first, my advice is not to read the list of side effects, just report anything unusual to your IBD nurse or consultant.

Hope you feel better soon.

Rubyrach · 18/09/2023 21:21

I’ve been on immune suppressants for 13 years and probably get less sick than friends and family. Do up your hand washing, and carry anti bact. I give anyone with visible coughs and colds a wide berth. Take flights, use buses etc as normal. Be careful with the sun, use spf. It’s also important to get your blood tests done on time. Good luck, it can be a long haul getting the meds right.

Abeli · 18/09/2023 21:25

I'm on Immunosuppressants. They do a fantastic job as intended. I tend to get more ill than other people though so I do try to avoid clise contact with people who are ill. I was very ill with covid for example. I wear a mask when flying but otherwise nothing special.
Other than that I do get annoying little infections like skin infections which don't make me ill but need treatment.

Noimaginationforaun · 18/09/2023 21:26

Sorry to hear about your diagnosis. It is a rollercoaster. I am 34 and now 14 years down the line with an ileostomy.

I have been on large number of various immunosuppressants of different strengths. Some have not agreed with me and others have. Some have been tablets and the ones I’m on now are injections. Others I’ve had are IV.

Some of them will affect how ill you feel and what you can do. The right ones won’t. It’s ok to tell your consultants if one’s are making you feel really awful for more than the initial ‘settling in’ period. You will still be able to go on holiday!

AutumnCrow · 18/09/2023 21:28

I think it's true that you do get much more into the habit of hand-washing, ventilating rooms, Dettol spraying, using hand gel and (sometimes) wearing masks in busy public places. And avoiding people with hacking coughs etc.

It just becomes second nature and not a big deal really.

mynameiscalypso · 18/09/2023 21:31

I don't have Crohns (although my SIL does so I know how awful it is) but I've been on immunosuppressants for most of the last 10 years other than a short period in the last trimester of pregnancy. Most have worked very effectively with zero side effects and I've generally been healthily than normal. My immune system was crazy before so it makes sense that it would be more effective at doing what it's supposed to do when it's not trying to attack me. No issues with holidays nor do I take any precautions really. I have a 4 year old so have been exposed to numerous bugs at nursery and school but have been fine.

LunaFortuna · 18/09/2023 21:38

I was on Azathioprine for Crohns for about 10 years, I was lucky that they worked brilliantly and I was so much healthier. Very rarely got ill, weirdly I’ve had more colds/ flu since stopping them! No probs on holiday but agree with pp about being careful in the sun. Oh, and I had to avoid anyone with chicken pox or shingles. Good luck :)

Labbingtons · 18/09/2023 21:56

Another ex-azathioprine user here. I was on them for 12years. I was very healthy and lived a completely normal life, including lots of travel. I hardly ever got ill despite teaching in a germ factory reception class.

When I was pregnant with my son (12), my Chron’s symptoms went away (common) and never came back (rare). It’s a strange illness.

Best of luck!

Stomacharmeleon · 18/09/2023 22:02

I was on infliximab for years and I was relatively well. I only stopped taking it when I was diagnosed with cancer (not related) It really helped with my crohns.

lapsedbookworm · 18/09/2023 22:08

I am on mycophenolate for an autoimmune condition , no side effects apart from my hair falling out a bit - but not so much that it is noticeable to anyone but me.

I was on steroids and they made me.very ill and I had.dramatic water retention/weight gain (I couldn't recognise myself in the mirror), but other people with my condition find them great and have been pushed into remission by them.

Overall, if the illness is bad enough (and I know from a family member with Crohn's how tough it can be) then I think it is worth the risk of trying immunosuppressive medication

lapsedbookworm · 18/09/2023 22:09

Forgot to say- have four feral children and despite their best efforts I haven't been ill much at all since being on the medication

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