New member

[carolm]

Sorry if this post appears twice.

I have had crohns for 14 years and pretty much managed the symtoms myself without meds, but, since Nov09 I have got much worse and was put on salofalk. This inflamed my pancreas and hospitalised so stopped that. Then I tried mezavant xl but this inflamed my stomach. Was took back into hospital for tests mid January - mri, barium follow through, x-ray and camera into my stomach. I had a colonoscpy in Oct 09.

2 weeks ago I was admitted again through A&E with upper abdominal pain and temperature. Spent a week on antibiotics, steroids and fluids. I got the results of my tests.

'Quite marked inflammation in last part of small bowel(terminal ileum)'
Entire large bowel inflamed
Dilated large bowel loops
Crohns in Stomach(biopsy confirmed)

At present I am taking 100mg azathioprine, 20mg prednisalone(reducing) and 40mg x 2 daily of omeprazole.

The thing is I feel terrible. I have cold sweats during the day but mostly at night, my pulse is up at 80bpm and dont have any energy. I lost blood 2 weeks ago and my blood count was 8.2 but is up to 9 now and I am chalk white. My stomach swells up during the day right under my ribs and I feel that I have to take short breaths. No D, going to the loo but producing little but often.

Should it take this long to start to feel better?

Carol

 

[Dustin]

Hi Carol, and welcome to the forum. You will find many experienced people on here, who have experience in just about everything to do with IBD. It sounds like your illness is quite involved, which could be why it is taking so long to get a response from meds. I was told when I was first put on Imuran (Azathioprine) that it takes about 6 months for the full effect - how long have you been on it? And are you on Prednisone or Prednisalone? I, like many people on here, have been on prednisone quite a few times, and I personally have fast reactions to it, but many unwanted side effects - my wife takes prednisalone, but it is an eye drop for her iritis. Maybe you should hold off tapering off it if you are still having bad symptoms? Not sure - I'm not a doctor. Another option might be to ask your doctor about a different med treatment (Remicade and Humira appear to work for many people).

Good health and best of luck.

 

[Rob]

Welcome aboard

I'm surprised that while in hospital they didn't hav you on hydrocortisone iv, I found this too really help calm my symptoms and allowed my other medication too control my flare better

20mg of prednisone isn't a big dose either especially if your having a bad flare up like you are, and normally I don't taper until my flare has stablised I've been on predniscone for 6months now, started at 50mg but had too drop too 30mg so I could get onto the new drug trial his recently

I'd speak too your gp or specialist an tell them your no better and ask what else you can do

also you can help your flare with your diet eat a low residue/low fibre diet until thongs calm down - gives your gut time too heal

 

[Astra]

Hi carol
and welcome

I agree with the others, and like Rob says, to start on 20mg is quite a low dose for Pred, I started on 40mg 2 months ago, and I'm staying on 20mg for another 4 weeks, I tried to taper down to 15mg last week, but got terrible D,
Maybe the best thing to do is phone your doc, you shouldn't be suffering like this in pain,
let us know how you get on
lotsa luv
Joan xxx

 

[carolm]

Thanks for the replys.

I had iv steroids in hospital and I started on 40mg prednisolone now reduced to 20mg. Dont know if they are scared my stomach reacts to all the meds or my pancreas becomes inflamed. I was still quite ill when I left hospital but I wanted to go home. I can hardly remember what was said to me but will hopefully see my consultant soon as he wants to keep an eye on me every 2 weeks.

I have a crohns nurse, I will give her a phone tomorrow.

Just dont seem to have enough info about crohns in the stomach??????

I also should have introduced myself -

Carol, age 43, I am a dog groomer living and working in Scotland about 15 miles out of Glasgow. 4 kids, 1 understanding husband and 2 brilliant dogs. Have my own business which I am scared I will loose with all the time off recently.

Only been on azathioprine for 2 weeks

Carol

 

[Astra]

Hi again Carol

just wanted to say, great you're in the UK!
hope you get some answers soon
xxx

 

[GoJohnnyGo]

Hi Carol,

I too had ulcerations further up the gastrointestinal tract (in my case the duodenum). I was resected in two places (the duodenum and the terminal ileum).

I hope things calm down for you.

Do you groom labradoodles? I have a scruffy little girl as you can see by the photo!

Welcome to Crohn's forum!

 

[carolm]

Hi Carol,

I too had ulcerations further up the gastrointestinal tract (in my case the duodenum). I was resected in two places (the duodenum and the terminal ileum).

I hope things calm down for you.

Do you groom labradoodles? I have a scruffy little girl as you can see by the photo!

Welcome to Crohn's forum!

Yes I groom labradoodles, hundreds of them. Big bouncy bundles of fun. I have a standard poodle Rhea and a tibetan terrier. Whats your dog called?

How long does it take to get back to work after a resection? I know I have a few strictures but I am still able to go to the toilet.

Nice to meet you all.

Carol

 

[carolm]

Hi again Carol

just wanted to say, great you're in the UK!
hope you get some answers soon
xxx

Hi Joan

So glad I have found this forum. I have learned more about my condition on here in the past couple of days than in the last 14 years.

I am a total workaholic, well used to be, go to the gym and walk everywhere. Last few weeks I have done nothing but I did find you all.

Carol

 

[Nyx]

Hi Carol...sorry to hear you're having such a hard time right now. Sounds like your disease is pretty aggressive, and like others here have said you should maybe be on a higher dose of prednisone. I was on Imuran prior to my surgery and it took about 3 months to really start working (hence the being on prednisone and Imuran simultaneously). Unfortunately, I can't give you any info on how the drug worked for me, since I ruptured my sigmoid colon and had to go off it.

Good luck, I hope you get some relief soon!

 

[GoJohnnyGo]

How long does it take to get back to work after a resection? I know I have a few strictures but I am still able to go to the toilet.

It took about 3 months to recover. This was 20 years ago tough, when surgery was more invasive.

My puppy is named Zuzu Gingersnap.

 

[alexandros8]

The doctor told me to expect a recovery period of 4-6 weeks. But... I'm three weeks post-op today from a lathroscopic resection. I feel 95% recovered... I've been driving and walking around w/o problems. I hope to start exercising in another week or so. Things have come a long way for this type of surgery.

It does make a difference if its lathroscopic or open abdomen... the latter will have a longer recovery period because its more invasive.

Good luck with everything!

 

[carolm]

Had my bloods done today. Nurse checked my pulse and its 117 bpm, cold sweats and feel tired. I was told to keep taking the meds and I will see my consultant a week today. I am waiting for my husband to come home with a take away meal mmmmmmmmmmmmm.

PS - how do you put your picture on your profile?

Carol

 

[Crohn's 35]

Hi Carol, welcome! I am mostly Scottish but here in Canada I dont have the accent . Someday I would like to visit there and seek out my grandfathers birthplace. I also have dogs, 3 Golden retrievers, I full bred, 1 half sheltie, and 1 chesapeake bay. I cannot tolerate any of the immunosuppressants and I am on 30mg of Prednisone. I have been on it many times and when you taper, it comes back. It is hard to find YOUR concoction of tailored drugs to get your Crohn's under control. There is a wealth of information here and lots of people to share their experiences with you. Unfortunately we are all in the same boat. Glad you are here, hope you stay with us!

 

[InkyStinky]

Hi Carol! I have 1 brilliant dog - a smooth-haired dachshund - but I'm thinking at some point I'll be able to talk my 1 understanding husband into getting another 1... or 2...

I'm sorry you're feeling so rotten. If you've only been on the azathioprine for 2wks I agree with the others that it seems a bit soon to be tapering the pred. I'm on mercaptopurine and my GI waits 2mths before starting to taper the pred because it takes 2-6mths for the mercaptopurine to kick in (I think the azathioprine is pretty similar).

As for your profile: after you log in there's a blue bar near the top of the screen with "User CP - FAQ - Members List - Calendar - New Posts - Search" and so on. Click on the "User CP" - it'll take you to a page where you can "Edit Avatar". I don't know what software you have - I used Paint to edit mine down to an acceptable size. Hope this helps!

 

[Agent X20]

Hi Carol
The azathioprine/imuran worked for me. Doesn't always agree with everyone but it improved my symptoms a lot. As others have said, it does take at least three months to start working properly and you have to have a lot of blood tests with it... my blood tests are down to once every three months now