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Haydn C - I'm newly diagnosed with Crohns

and here's my story:

I had a Flexi Sig a few weeks ago, they gave me an enema, and left me for half an hour, then completed it but gave me 4ml of sedative in case i had to have another one, or a colonoscopy in the future as to not put me off. He found nothing, and i then went into hospital for a week after an MRI result and a stool sample calprotectin result (very high).

I then had an perianal abscess form which meant a week long stay in hospital. It then got drained and is well on the way to recovery (says the district nurse who packs it every day, she can't pack it today as it's not deep enough any more, surely a good sign?), I'm seeing the consultant and the surgeon this week to see how it's healing and will drop an update then, but touch wood, doesn't seem to be making a fistula at all, i have Crohns by the way, and he wants to put me on infliximab soon.

I had a T-Spot test (TB test) before i get put onto the infliximab, and have been looking up side effects, lymphoma, leukaemia, liver failure, right down to the dermatitis, basically i feel like rubbish all day every day now as i'm home alone, and not allowed out at all, don't see anyone except my mum and sister, and the district nurse, it's horrible and i don't really want any more conditions to come of the treatment, such as dermatitis which will need extra time to heal or extra medications.

Thanks For reading all of this
 

Honey

Moderator
Staff member
Hi there,
and welcome. Sorry you are poorly. Remicade infusions helps many people to feel better and have a life. I wish you well with this treatment. You will be well monitored during treatment, bloods tested and questions. The treatment is fine, take a book to read or music to listen to on your MP3 player or phone. I had lunch at the hospital during it. So do not worry. We are all individuals and respond to treatment as such.
I did well for a year on infusions as it reduced the inflammation and I went back to normal! However, I did have to stop these as I took a lung infection. I am currently on steroids.
I wish you well and hope it works for you
.:):rosette1::welcome::rosette1:
 
Hi Haydn, welcome to the forum. If your abscess can't be packed anymore, that means it's healing well and should close soon. Why are you not allowed out at all? Because of the abscess? I've been housebound a bit, and it can get boring. Try to keep yourself active. When reading about side effects, keep in mind, that it's only a very small fraction of people who get the very serious ones. The odds of you getting them is very small. Take care and keep us posted.
 

Trysha

Moderator
Staff member
hello Haydn
That is a nice name.... are you musical?
Its good to hear you are healing well after the surgery.
Remicade has been a godsend for many people,try not to be afraid of it.
There are a small number of people who have had negative effects--happens with all drugs.I am sure you will do well.
It is important to your healing to get out and about if it is possible, it will cheer you up and you will feel better for it.
Of course sometimes there are limitations due to the nature of the illness.
Feel better soon
Hugs and best wishes
Trysha
 
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