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Can anyone with Crohns offer advice?

(8 Posts)
brucebogtrotter Fri 03-Feb-17 10:01:06

I'm a Crohns sufferer, obviously. Just before Christmas, I lost my appetite, lost weight, got diarrhoea, became fatigued and had stomach pain. Classic symptoms.
I wasn't due for a consultant check up till November, but I rang up and the earliest they could fit me in is March. Not ideal, but ok.
So now we're in February, and I definitely feel better, but the diarrhoea just will not stop, and I don't seem to be putting the weight back on. But on the other hand, my appetite has definitely returned, and I don't feel nauseous, as I have with previous attacks.
I really, really don't want to waste my doctor's time. I don't know whether my symptoms mean I should see him in March or leave it. What would you do?
Thanks.

DubiousCredentials Fri 03-Feb-17 11:33:48

I have ulcerative colitis not crohns but if it were me I would keep the appointment for sure. When was the last time you saw your consultant? At my hospital there is an IBD nursing team who will answer phone and email enquiries about all aspects of the illness and will give advice or arrange appointments as and when. Is there anything like this at your hospital?

But to answer your question, I would keep the appointment given that you still have some symptoms and haven't put the weight back on. You won't be wasting anyone's time.

Growingpeopleme Fri 03-Feb-17 11:41:39

Very similar to the last poster, agree with all their points. Also have really found nurse practitioner helpline very useful over the years. You should ask if this service is available to you. On the day to day realities I have found they know a lot more than the consultant most of the time.

Whatthefreakinwhatnow Fri 03-Feb-17 11:47:16

Another UC sufferer here. A few years ago I thought I was starting another flare, went in for a scope and nope, all was well, but I had diarrhea every day and awful cramping....Turns out I had IBS on top of UC, my gastro said this happens quite a lot sad

I manage it with 8 inmodium in the mornings a few hours before I need to leave the house, then I'm fine all day. Obviously at the first sign of blood, mucus etc I stop taking it because of toxic megacolon risk.

Talk to your gastro nursing team about the possibility of IBS diarrhea and if they recommend immodium for you. I buy the generic Loperamide from supermarkets, 99p for 6smile

brucebogtrotter Fri 03-Feb-17 14:59:47

Oh thank you for your comments. I do have access to a gastro nurse by phone but, because she's overseeing so many patients, she's extremely difficult to get hold of.
I didn't know about the IBS on top of Crohns, that's interesting. What I might do is try some immodium anyway and see if that helps.
I know it sounds irrational but I'm worried about scar tissue forming and potentially causing an obstruction.
Thank you for your thoughts.

MollyHuaCha Fri 03-Feb-17 16:59:36

Hi Bruce, another Crohnie here. Def keep your appt. When you go, ask what the procedure is when you need an urgent appt. Waiting a long time when you are having a flare up is horrible and can lead to a small treatable problem growing into something more serious. I had a flare up yrs ago and the stroppy receptionist wd not give me an urgent appt. I ended up going to see a private gastroenterologist just to get the treatment started. When I eventually saw my normal NHS consultant, he said next time I must stress to the person on the phone that this is an acute flare up and I need to be seen urgently. Wishing you well flowers

brucebogtrotter Fri 03-Feb-17 17:21:46

That's an excellent point actually - this time it's not too bad but it's been far, far worse in the past. I will ask about that. Thanks for the pointer. I'll definitely keep it then.

gobbin Fri 03-Feb-17 21:21:55

I have Crohn's. Def keep the appointment and don't be tempted to play down symptoms. Describe your very worst days. That way they know what they are dealing with.

The range of treatment options now are much more varied than when I was first diagnosed (22 yrs ago). You may be lucky and be given biologics as first line attack (e.g. Infliximab or Humira) but it is common to be given a combination of steroids, antibiotics or immunosuppressants first.

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