Hi all,
I went to my doctors 10 weeks ago with diarrhea and weight loss. Got fobbed off for 5 weeks with Gastroenteritis.
Then saw a different doctor and had bloods and stool samples done. Waited a further week for results which indicated a bowel disorder and was reffered to hospital. Now having lost 2 1/2 stone I received my appointment to see a consultant. The consultant saw me and said I needed to undergo a colonoscopy.
I was diagnosed with Crohn's a week ago, following a colonoscopy where they took 12 biopsies.
I have been on 20mg steroids and slow release tablets for a week now, I have not noticed any difference and am still going 8-10 times a day. Is this normal?
Thanks
Scoop1976

Hi Scoop1976,

I'm newly diagnosed too. 20mg is a low dose. My doc put me on 25mgs of Prednisolone a month ago and I felt better within four days. But when I dropped down to 20mgs, I noticed a return of the symptoms straight away and I've had to go back to 25. From looking at other posts, 25mgs seems to be the magic number....maybe you need a higher dose?

Hope things improve soon for you,
Gail

Hi Gail,
Thanks for the advice. A bit scary at the beginning, as it seems so individual.
I am back at the doctors on Monday so will run this past him and see if he can up the dosage.
I just want to feel normal again (or as normal as can be expected). I have no energy at all.
Even going to the toilet drains me and the piles don't make it any easier.
Will let you know how I get on.

Thanks again
Take care
scoop

Scoop, welcome aboard. It is unusual for a dose of Pred not to do anything after a week but give it a little longer. If there's no progress after a couple of weeks then it would seem it's not working and would be worth getting back in touch with your consultant. It may be you need a higher dose or that there is something else that needs looking at, Crohn's is sometimes accompanied by other bowel problems so you may need Loperimide or something else as well as the Pred. Don't panic about it but if it's not working don't be afraid to nag the doctors - it's their job

Nigel

Hi Nigel

Thanks for the advice fella. Was unable to get to doctors today as I have been having a very bad day and couldn't chance it.
I am awaiting a phone call from my doctor and the dosage of Pred is top of the list. Along with Pentasa granules, does anyone else find pentasa(Mesalazine) tablets hard to swallow? They just get stuck in my throught and make me gag. How about piles, do these go hand in hand with Crohns?
I have internal and external ones and as you can imagine I am In agony.
I have had more information from the 2 replies on this thread. All consultant said was you have Crohn's, gave me a scrap of paper with NACC written on it
and basically get on with it.
Will keep you updated with the outcome from the doctors.

Thanks again
Scoop

Hi Scoop,
re your difficulty swallowing pentasa , the easiest way is to half them ,  It works for me!!!!

Let me know if it works for you.
Delilah

Hi Delilah,

I was told not to halve them and the instructions on the prescription states to swallow them whole.
I have been breaking them in half (along the line? as I can't do them whole.
My Mum who is a nurse said they will not work properly if you break them.
Talk about confussed.
I am going to hassle Doctors tomorrow.
Will let you know how I get on.
This site is great. So much information from personal experiences.

Thanks
Scoop

Hm it depends I suppose on whether it is an enteric coated tablet. Odds are if it has a line down the middle, it is intended to be able to be cut in half to make a smaller dosage. In that case it should work fine when cut in half and I'm not sure why your mum is concerned. Always best to check with the doc I suppose, just don't expect them to be perfect on this, Chrohn's is a fairly rare condition for them, they may only have one or two patients with the disease. I can't comment on the piles, I think this is fairly common with Crohn's and I know I had a problem with it about two years before I was diagnosed, which was probably related.

Nigel

Hi scoop 1976, try asking for Pentasa granules.   They come in small sachets and you just pour them into your mouth and wash down with water.

Just got back from doctors/chemist (now im like a walking chemist) Doctor has put me upto 30mg prednisolone and said that the tablets would not work as well if halved. I mentioned granules to him and he had never heard of them. A quick search and he found them and the chemist is ordering them in for tomorrow. Am feeling a a bit better in myself today but have still been 6 times and its early yet.  
I will keep you posted, fingers crossed.

Thanks for the tip Linney.

Scoop

Any beter with more dosage Scoop?

Hi Steve,
I can't say i've noticed any difference, still early to tell though. Got pentasa granules from chemist today and are so much better than the horse pills. I will keep you all posted on the progress.
Fingers crossed
Scoop

Hi, I,m a newbie to the blog, but, not to Crohn's. You are on a bit of a journey. Give it time and things will start to become clearer. There is no quick fix. There are lots of lows. But, to recognise lows you have to have highs. Good Luck.

Hi I'm a newbie   I had an emergency right hemilectomy (think that right spelling) 10 weeks ago due to a blockage.  I also got c diff with it so was in hospital for 17 days. The tests show I have Crohn's, I have had no advice on diet or anything.  I was fine up till this week now I have crampy pain quite low down, like before, and also a sharp burning pain to the side of my tummy button.  I have been give an anti inflamitory I think its called Pensa.  Can anyone tell me if this is normal and give me advice as to what I should or should not be doing.  I am still finding movement of any kind difficult and am getting depressed.

Quoted from scoop1976

Hi all,
I went to my doctors 10 weeks ago with diarrhea and weight loss. Got fobbed off for 5 weeks with Gastroenteritis.
Then saw a different doctor and had bloods and stool samples done. Waited a further week for results which indicated a bowel disorder and was reffered to hospital. Now having lost 2 1/2 stone I received my appointment to see a consultant. The consultant saw me and said I needed to undergo a colonoscopy.
I was diagnosed with Crohn's a week ago, following a colonoscopy where they took 12 biopsies.
I have been on 20mg steroids and slow release tablets for a week now, I have not noticed any difference and am still going 8-10 times a day. Is this normal?
Thanks
Scoop1976

Hi Scoop,  I think you could do with having your steroid Dosage put up to about 40mg - i started mine on friday 40mg and feeling much better.

I have to take 40mg for 2 weeks then drop to 35mg for 2 weeks and so on until i am off them completely which is in 2 months time.
I am also waiting to see a Bowel Disease Nurse to get my Azathioprine from her but not sure how long that will take.


Darren