Diagnosed (more or less) in February, unsure about medicating

Hi there, I'm a 30 year-old male from the UK. New to the forum so thought I'd share what's been going on with me the past few months. I have lots of questions but I guess maybe they'll be better off in their own threads?

So yeah, I spent pretty much of January feeling ill. Just like I was fighting something off. Quite feverish, very fatigued. After a few weeks a mild sort of stomach ache came on which didn't bother me particularly but knocked me kind of sick if pressed in the right place. My GP didn't seem concerned really, did a few tests which didn't suggest anything.

Got to the start of February and after a few days of shivering under a blanket my temp just seemed to be going up and up, it got to 39.2c before I figured I'd best get down to hospital where they initally guessed it to be maybe an odd form of appendicitis or an ulcer but a couple of days later (and one night having to rub myself down with iced water after my temp went up to 40.2c lol) the CT scan showed evidence of Crohn's. Was started on Prednisolone (40mg) then the colonoscopy was done and showed ulceration in the terminal ileum.

Been tapering down the Pred since then (bumpy ride to say the least) and the doc at my clinic appointment said they were 'pretty sure' it's Crohn's.. I thought the biopsies were supposed to tell us that for sure but I guess not! Possibly the element of doubt is because I've had no bowel symptoms whatsoever which seems to be freaking the doctors out a bit, it's like they don't quite know what to do with me as they said for the amount of disease that seemed to be present I 'should be on the toilet six times a day'. Obviously I don't want those symptoms but I can also see how not having the usual signs might make things difficult as far as figuring out triggers, recognising a flare etc.

By their own admission they're hesitant about where to go from here regarding medication due to my symptoms. They're suggesting Azathioprine which sounds like fun stuff although I guess you tend to hear/read more of the bad than the good! Part of me wants to do whatever gives me the best chance of avoiding the Pred again and another part thinks that it was most likely something quite specific which triggered this (I took apple cider vinegar during December to try to ease the bloating problems I've had for years) so I might be OK without. Sort of feels like a dice roll either way though.

Can't really draw any conclusions from my father's Crohn's experience as it's very different to mine thus far: his symptoms are very classic and he just has a bad couple of days with it every now and again. He's never been hospitalised with it and hasn't ever taken anything for it (although they did try to get him on the Pred back when he was diagnosed) so he seems very lucky really.

Apologies for the massive post but it feels good to have hammered it out. No hard feelings if you skipped it though lol. I'd love to hear from anyone whose symptoms are similar to mine and what their experience has been

Hi Panza & Welcome to the Forum:

My daughter was diagnosed five years ago and the symptoms she had at the beginning seems to be very similar to yours as she did not make a lot of trips to the bathroom at the beginning, either, but she did have the fevers, weight loss, loss of energy and hair loss. After initially taking prednisone along with cipro & flagyl, she took Azathioprine, but it did not help her at all so she bounced around to a variety of other meds throughout the years. You really hit the nail on the head when you said, "Sort of feels like a dice roll either way," as that is exactly how I feel about the whole minefield of biological medications. My recommendation is that you not begin any treatment plan recommended by your GI until you do your research, and that is something you will have to do on your own as your GI will not give you a book listing all of the pros and cons of the various medications they will prescribe for you (although I certainly wish they would!).

Good luck and continue to post your questions or concerns here as there are lots of very knowledgeable people in this forum that will offer you great advice or just lend an ear when you need it.

Take care.

Lisa :ghug:

Hello and welcome to the forum

I can understand your hesitancy in started a med like the Aza if your are not very symptomatic, however from the sounds of it the scope did show quite active disease? It can happen that you feel quite well when things are bubbling away inside so the key is to stop from things getting to the stage where you and the loo are constant companions. When will you next be seeing your doc to discuss the treatment plan going forward? We do have a treatment section that is worth checking out if you have not already to look into alternatives to discuss with your doc.

Wishing you all the best.

AB
xx

Drugs like Aza alone won't get you flare free and free from Pred by themselves, but they will significantly enhance your chances to go into remission.

I have tried to stay in remission without Aza and it didn't work. It might work at some point in the future, but in the past it didn't.

I am taking any Aza side effects that might occur any time over Pred's side effects and Crohn flare ups and another surgery. If you got a good GI and go to your regular blood tests every 8 weeks once you have phased in Aza, it is highly likely you won't experience any side effects from it.

Still, regardless of whether your start with Aza or not, you also need to manage your Crohn. That is actually much harder said than really done. I recommend regular endurance sport, really strictly avoiding certain food that just doesn't work for you and potentially also start on vitamin therapy (vit D3, B6/B12, magnesium, zinc, folic acid etc.).

Thanks loads for the replies everybody, all taken on board although they seem to confirm my suspicions that it's hard to say anything very definitive about how this condition will behave!

I'm off doing plenty of reading now so will return with more specific questions I imagine..

Hiya Panza
and welcome

Sorry you're feeling so rough.
Cos your Crohn's is in the terminal ileum, Budesonide (Entocort) might be a better steroid for you than Pred. Unlike Pred, Entocort is non systemic, only goes to the small bowel and start of the large. Pred does the Full Monty, hence the side effects!
I've always done very well on Entocort, but couldn't tolerate Azathioprine.
Some reading up on Entocort for you, good luck
xxx

Thanks for that Astra, I'd read about that somewhere on my travels and then completely forgot the name so you've saved me asking! I think I'd feel a lot less worried knowing that there might be an easier steroid option available. I assume they gave me the Pred instead just to be thorough, maybe because my temp was so high?

It leads me onto something else I'd been wondering actually, I imagine it probably varies a lot but on the whole does Crohn's tend to stay in the same area?

Hiya Panza

I think it can manifest elsewhere over time, yeah.
They found some in my colon during my last scope, hence the Humira now.
I was put on Pred when I was in hospital 3 years ago, my CRP was 261, very high, but it healed me well. I wouldn't hesitate going back on it, but only if I'm knocking on Death's door like I was 3 years ago! It does blitz severe inflammation very well tho
Mention the Entocort to your doc, good luck xx