Newly diagnosed with crohns

Hi, everyone. I was recently diagnosed with crohns disesase after many years of abdominal spasming. I have been previously been able to control the symptoms myself with analgesia and buscopan and maxalon. But the symptoms have been getting worse. Last September I was admitted to the ER with excruciating abdominal cramping especially around the umbilicus, the pain was worse than labour pains. I was admitted to hospital, had a CT sacn which showed small bowel changes. I was on triple iv antibiotics and buscopan and analgesia. My b12 was down so I was on b12 injections, not now though. A CT scan showed small bowel changes. I was in hospital for 8 days, I had a colonoscopy and endoscopy which didn't show much at all. Further investigations with the pillcam and MRI have shown multiple small bowel ulcerations and diverticulum. I do not have an appetite and only eat dinner so that I can function. I don't suffer from constant diarrhoea, I can not go for days but then I can have loose motions, they are very varied. The doctor has diagnosed crohns disease and has commenced me on prednisone and imuran. I am concerned about the side effects of these drugs as I don't know if I have true crohns as I don't suffer from the constant diarrhoea, even though the doctor says I do. I'm very confused. Some advice would be great.

Hello John and welcome to the forum. We are all different with how this disease behaves and whilst some of us do get diarrhoea some get constipation - there is not hard and fast rule here so do not discount the crohns diagnosis. Being on any med is never ideal and they always have their own set of side effects, the pred has some rubbish ones although the increased appetite can be a benifit to those who have lost a lot of weight due to a flare up, it is really good at hitting inflammation though which is why is gets used a lot for crohns. I am on Imuran (aka Azathioprine) myself and so far so good, again yes it does have side effects but most of them are maybe's and I would rather have that than have my crohns untreated and know for definite that I will have problems. Have a nosy at our treatment forum to get sme further info on these and also other meds that are used for crohns, you may find there is a different med that you would like to discuss with your doc.

Crohns can be hard to deal with at times especially when newly diagnosed and there is a lot to think about all at once. You have come to the right place though as there is a lot of really helpful info here and more importantly lots of support from a great bunch of people.

I hope you can be feeling better soon

AB
xx

Hi John11

Welcome to the forum! It's pretty confusing when you feel your symptoms don't match your diagnosis, but as Angrybird says, we all manifest Crohn's slightly differently, and what we can tolerate in terms of food, and how medications work or don't work is so specific to each individual.

Has your doctor got you doing regular bloodwork now that you're on Imuran? The side effects of all the drugs used to treat Crohn's are concerning, and sometimes, the effects are bad enough that we may discontinue a particular drug. Hopefully, the prednisone catches the inflammation---I imagine that your doctor will taper you down off prednisone in the next few months and then keep you on Imuran. Imuran takes a few months to take effect, and prednisone isn't to be stopped abruptly, hence the tapering down.

Here's hoping that the meds start taking effect and you begin to feel better real soon!

Cheers,

Kismet

Hi john11 and welcome to the forum. You've received some fantastic information above and I echo it

One thing I wanted to touch on though is the vitamin B12. If your vitamin B12 was so low that you needed injections, then chances are you shouldn't have stopped. Get your vitamin B12 levels checked again and get the specific number from the doctor. In my opinion, anyone with Crohn's Disease should strive to get their level above 500. The "low normal" of the reference range is way too low for someone with a chronic illness like CD.

Again, welcome!

Thanks for the valuable information. I suppose I just have to accept that yes it is crohns. I am currently taking prednisone and have been having hot flushes and terrible night sweats and thus having very restless sleeps. I feel my body tempersture has gone up at least 5 degrees, which isn't a bad thing I suppose with winter coming up. Has anybody else experienced these symptoms?

John, I definitely see people around the forum with those symptoms. Sorry you're having to deal with them Be sure to let your doctor know about them if you haven't.

Am on a weaning dose of prednisone, taking 40mg daily this week. Have just had blood work done . Have very high neutrophil count of 97% and my white cell count is up to 20. Does anyone know if this is normal for these results when taking prednisone?

Hi, I was recently on the pred and it did mess with these counts for me as well, they starting getting better as I weaned down to the lower doses and are now normal again....I would expect that the doc will do more bloods to keep an eye on these levels?