crohns and immunosuppressants???

[Awbee23]

hello all first time poster after being recently diagnosed with crohns post colonoscopy which showed long term inflammation, ulcers and some restriction in the intestine. First presented with mild stomach pain and some blood in poo but NO other symptoms.

I feel lucky to have so few symptoms compared to others but my doctor has recommended and is being quite pushy about going on immune suppressants which I’m not keen on as I have no real symptoms and the risks/horror stories I’ve heard do not sound good he has advised this so that I don’t obstruct???? Is this a normal thing considering at present I’m not affected much?

He has also said other than surgery this is the only treatment option I’m hoping there’s something else I can do?

this was my first consultation and I can’t get through to the ibd nurse at present but it has left me panicking slightly, all the information I’ve read on the disease seems to describe very different and more extreme symptoms to what I’m experiencing

[Frasina]

There are lots of different medications out there for Crohns. Some are proper immunosuppressants, but there are other meds you may be started with. You need to do your research and speak to the consultant or IBD nurse to find out which drug they want to start you on.

I have patchy pancolitis which is also IBD and I am on mezazaline (MezavantXL) which I take 2400g a day and have done for over 2 years since diagnosis. If I flare (even a mini flare), I double the meds for 2-4 weeks and I am ok). Others when they flare need steroids such as Pred or Busedonide short term to get it under control.

You are clearly lucky that you do not have many of the symptoms others have from Crohns however, this does not mean you should not take any medication at all (the fb crohns and colitis group all say that without meds their crohns would be far worse).

The thing to remember is this; even without many symptoms things can be getting worse in your gut and often meds completely slow down the progression. In your shoes I would ask what meds they are suggesting then see what others say about the meds they want to put you on. Overall, the majority will say it has benefitted I'm sure.

[Valbaty54]

You may not be feeling much in the way of symptoms but blood in your poo and the colonoscopy results show that the disease has been damaging your colon for some time. It sounds as though you have a swollen area which is a narrowing and if this gets blocked, that is a major emergency situation. I would follow your consultant's advice and accept whatever meds he suggests. Many of us are finding these successfully control the disease and allow us to keep our colons for a little longer. I know it's difficult to get your head round it at first!

[Steve2357]

I have had Crohn's for over 40 years. I have been reasonably lucky in only having 3 operations with at least 10 years between them and each time they took out less than a foot of bowel each time. The surgery has got a lot better over time, like keyhole, but for my first operation they cut me across my torso from one side to the other a good 20 inches. Each scar has been less than the previous. However, while my Crohn's is well under control, I suffer a lot of pain because of adhesions, they may be thought of as internal scar tissue that connects tissues not normally connected, which results in internal organs not moving as they should, as a result of the previous surgery.

You seem to have been lucky, so far regarding pain or problems with your bowel, diarrhoea/constipation, but the real damage seems to have been done, and will carry on unless treated, as you say you have "restriction in the intestine" by which I assume you mean a stricture, a narrowing. Without treatment the bowel will just get narrower and first you with get a partial blockage with a lot of pain, then a full blockage, a large amount of pain. If you get as far as a full blockage the only way to treat it is surgery.

You have to remember, they do not know what causes Crohn's and there is no cure. They know that it is your own body attacking itself, hence the best treatment as far as they are concerned is the use of immunosuppressants, which have greatly improved over my lifetime, with plenty alternatives if one does not work or the side effects are too bad. I have been on Infliximab for almost 6 years now and have not had a flare up or side effects. Just an hours infusion ever 8 weeks. It is not cheap! The one time I caught Covid, the only reason I knew was the test, no symptoms.

[georgecat1]

You could get a second opinion.The immunosuppressants can be effective but can have side effects.

[Purplerain66]

my son is on immune suppressantsfor Spondylitis AS - he is really well on them been on them about 2 years.

I have crohns and waiting fir my immune suppresants to arrive - i have had crohns 49 yrars gad surgery st 11 years old - ladt 3 years bedn having reslly bad blockages because of old scar tissue- wear and tear inflammation rtc etc i was also told this is the best option. I have been in and out if hospital a few times this year was on fluids only fir 6 month's - Ensure drinks - just starting to jntriduce limited fioods- so im going to give the immune suppressants a go,

Someone else said get another opinion speak ton-your GP maybe -

Its mind blowing the information when you start reading it..

Good Luck with finding something for you

That helps

X

[Songbird69]

Hi.

I have Crohns. For years I took LDN (low dose naltrexone) which out my Crohns into remission and sorted a fistula.

It is only recently that I have had to start taking biologics, but I’m really glad I had years of respite with the LDN.

If you want to know more, happy if you want to DM me.