I've been on Infliximab since November which has kept me off the Prednisolone and I have been feeling great. I thought the bad times were behind me, until yesterday.... My bm's have dropped off the chart, as bad as they've ever been, I feel awful, can't eat, sleep loads and the cramping is returning. Looks like I'll need to start myself back on the Prednisolone soon if things don't improve. If I do, I know my Consultant will stop Infliximab and I'll be back to square one and possibly facing colectomy and stoma bag. Feeling a bit down now.  

Shane

hi shane.

its always a real downer when you've been doing well, and then things go backwards again for a while. its bad enough knowing we have crohns, without having the addtional blues which we get at these bad times. but keep your chin up - theres loads of options available to get your quality of life back, medicines and surgery.

wishing you better, very soon.

Thanks Sue, I appreciate your kind words. I'm feeling slightly better today, although other symptoms are still around. Fingers crossed, maybe I can avoid going back on the Pred.

Fingers crossed that you start to feel better soon, Its horrible having to go back on to the steroids right backat  square one just after you think you see the light at the end of the tunnel.

but like sue says there are lots of options avaliable and you will find the best one for you.

Just an idea but as anybody ever told you about having a nasal gastric tube fitted, It worked for me and i found it was by far the best treatment and it kept me off the dreaded steriods.

Quoted from gemma

Just an idea but as anybody ever told you about having a nasal gastric tube fitted, It worked for me and i found it was by far the best treatment and it kept me off the dreaded steriods.

My consultant hasn't mentioned anything about that as yet. I'll keep that in mind though, thanks Gemma.

I'm feeling much better today, thankgod.

Shane

glad your feeling better.

My specialist never mentioned it to me either i came across it by accident, they said the reaon they dont do it very often is the lack of dieticians, but to be honest they dont get involved till the end and only see you once to tell you how to reintroduce food.

I was told by my consultant that it is cheaper doing it like this then taking all the meds.

You need to be prepared for your house to look like a chemist as they sent you all the equipment in one go.

Surgery for Illiem Cronh's
Hello fellow sufferers,
Just found this web site, I was starting to feel that it was only in the USA that I culd get any information.
A li6tle about myself. I am 66 years old.  After suffering for about 10 years and lots of visits to GP I was diagnosed with l Illieum Cronh's in August 2008 and was put on 40 milligram Pred steroid and felt 1000% better went on holiday. Ate what I liked and felt great. Returned home and started Azapronale 100 milligrams, after two weeks felt very ill with high tempreture, stomach cramps, usual diar: joint pains, and landed up in hospital for two weeks, mu liver was affected and the Axapronale was stopped, 5 days inrtavenous Pred then sent home on another course of 40 mill Pred. decreasing I hate taking steriods I feel as if I am shaking all the time, I'm only sleeping for 4 to 6 hours a night, irritable. My eye sight seems to be affected.  Is this normal ?
Saw the specialist (who is great) last week and saw the barium results of the small intestins showing a restriction, he wants to operate and remove the area of about  6 to 7 inches by key hole surgery. I would love to hear from anyone who has had this surgery ...with either good or bad results, how long does it take to get back to normal, what medicaltion is prescribed after surgery ...I really don't want to be on Steroids any more, and I don't know what else I will be treated with. Any ideas ?                        

Hi Shane,you must be feeling pretty awful at the moment,and yes dark days indeed.
I was the same last nov,when i was hospitalised for 10 days.
There were dark days,and i didnt think i would get out before xmas.
But having all my veins calapse,and 3 pints of blood,I pulled through,and made it for
the xmas period.It wont be good for you,knowing everyones having fun and all you want to
do is stay in bed and not see anyone.
Iam here if you fancy a chat,you need as many friends to help you with this,and i would love to
be one of them.

regards Dave

Hi Shane
Thought I would write as in similar situation... wouldnt usually but I feel those dark days looming and may need support through these forums,
I have been on infliximab for over 5 years and it was the answer to my prayers after having crohns for most of my 32 years, now it has just stopped working and i am having some weird reactions to it...   causing cold sores, breath shortness, wiped out totally, Side effects- blurry vision, blackness, dizzy, faint, confused and BAD headache, fizzy and pins and needles...and just feeling very bad once again

Week before treatment was due was in agony, lost a stone, felt worse than ever before.. now not picking up after.. Longer gaps in treatment lasting but does relieve pain for short time! Still going to the loo frequently..

... However i have been to see my consultant and have asked about the following (which i have researched as i have tried everything else... i think)

Other Options.... humira? cimzia (problem with these in UK is getting them approved) Budesonide? stem cell transplant?
"Antibiotics such as Flagyl (metronidazole), which are effective against many types of bacteria, are often prescribed "off-label" to help relieve symptoms of Crohn's disease, especially when it affects the large intestine or causes abscesses and fistulas around the anus. Other "off-label" medication use includes antidiarrheal drugs such as Lomotil (diphenoxylate) and Imodium (loperamide), which may relieve cramps and diarrhea.

Think you need to Check-
immune system, blood count, liver & lungs, tb and heart when on infliximab-
Have researched internet and found issues of toxic overload? Caused by combination of drugs, drug assessment needed? Infliximab and azathioprine.. ?

Take care.
Laura
PS does anyone know about side effects of Budesonide? Hate steroids and the moon face, would 9 mg cause that?

hi just found this forum i am having a realy bad time with my crohns i have been ill since august, i had surgery on my small bowel but there was also a abcess attached to the abdomen wall i have been in to hospital 8 times my problem is reocurring abcess and fissculers i have had near organ faliure and went septic i am feeling so ill and tired allthe time. at the moment i am on steroids which i am reducing also pentasa and ciproxin for the infection i am waiting for my consultant to sort out my medication i have been on azathiaprine but was taken off it to try to sort my other problems out i have had crohns  since 1981 i have two lots of surgery before and never had the complications ihave this time answer too your question laura is that you should not get moon faced i have cut mine down to 20mg a day and have been on them for 5months