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

Quoted from anita g

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.

Hello.   Same thing happened to me (without the C diff) - recovery from a major operation takes months so you need to learn to be patient!  If you've still got pain, you should get back in touch with your consultant/doctor and just rule out any of the usual complications from surgery.  It sounds like you are on Pentasa - slow release mesalazine - which is a common medication for Crohns.  Try and develop a good relationship with your health carers as this is a chronic disease....you may be lucky and be symptom free, or you may have regular flare ups.  Read up on diet - it helps for some, not for others.  Here begins the journey.  Good luck!

Hi Anita.  Don't try and do too much, an operation takes a while to get over. The crampy pains are quite normal but not something you need to put up with! Keep nagging your doctor to get you an appointment with a dietician. I didn't get on with Pentasa but lots of people do so hopefully it will start to help soon. Take care of yourself, you need to put yourself first! Keep in touch there is alot of support here. Dawn x

Hi all

Have been on 30mg of pred for 6 days now and it seems to be starting to take effect. I am still going 6-8 times a day now (still in pain).
But alot more spaced out throughout the day, if that makes sense. Problem is I am supposed to drop back down to 20mg as of wednesday.
I am hoping I am not going to go backwards. Is it just me or is it a case of you have no energy with Crohn's??
As I have been laid up for 11 weeks now and have no energy what so ever.

Scoop

Ah, the low energy thing!  In my opinion it's the worst aspect of this disease.  And because there is no medical way of measuring low energy, it's difficult (some may say impossible) to treat .  My advice is to find a way to learn to live with it (practically and emotionally)    And value the good days where you have energy.  You have to have realistic expectations about what you can achieve and find a good support network.  I've lost some 'fun loving' friends who can't understand why I don't want to go to drunken late nights out any more - and gained some great new friends.  I don't want sympathy, just understanding that I might have to change plans at the last minute or might have to go home early.  It can get you down, and you have to work hard to keep positive, but reading this forum reminds you that it could be SO much worse and learning to take life at a slower pace isn't all that bad!

I agree with goosemum, it takes a bit of getting used to (everything on tv after 9pm gets recorded I am tucked up by then !) and understanding friends are worth their weight in gold.  I get down like everyone else but also feel very lucky that I am still able to work.  There is always someone worse off but the forum is always here to have a moan and get support. x

Hi All,
Well am down to 5 a day ( not fruit and veg ). I have been instructed by my GP to reduce my dose of pred from 30mg to 20mg as of today.
I am just a little concerned that this will only make things worse. I have no idea how steroids work as have not been on them before. But surely if 20mg didnt work before, whats the difference now.
I am back at doctors on Monday as I have no energy and just feel tired all the time. Is this normal?
Talk about confused.
Thanks for all the replies / advice. Its much appreciated.

Scoop.

Sorry a bit embarrassing, but does anyone else have the problem with leakage. As this is causing a big problem with aggravating my piles / skin fold.
Any advice would be great.
Thanks
Scoop

Hi Scoop, don't ever be embarrassed on here there will always be someone who has had the problem before you and can help.  So far I have been lucky and had no leakage, a few near misses though so can't help.  My consultant says the tiredness is a sign that the Crohns is active, I feel that I am on the verge of going down with something by afternoons and evenings (sort of achey and not right).  Luckly I work in the mornings which is my best time so I have been able to hold down my job (bit late some mornings due to loo stops lol).  I have found stopping and resting and not trying to fight the fatigue is best. The spaced out feeling goes with Pred and I felt better when I got down to to 10mg but it started again when I increased to 15mg, there seems to be a fine line.   You may find this time when you reduce that the symptoms don't come back with avengence it depends how much inflammation there is and that seems to be trial and error getting the balance right.  Keep smiling, everyone here understands how much crap we put up with (pardon the pun)and I am sure someone will be able to help with your previous post. x

Hi Scoop,
I was told that I had to reduce my Pred from 25mgs to 20 then 15 etc. But as soon as I got to 15, my symptoms came back. The doc told me to go back to 25mgs which I have and I've been fine since. I've since found out that most people's experience is that you have to taper the Pred very very slowly because of withdrawal and the risk of relapse. So, I started tapering a week ago by halving a 5mg tablet so I went down to 22.5 mgs a day. I've done that for 5 days without any sign of relapse. So yesterday I cut it to 20mgs a day. I'm going to stay at 20mgs for 5-7 days and then cut down to 17.5 and so on. It's a very slow process but the body stops producing cortisol naturally when you're on these drugs so to minimise the withdrawal I think it's best to do it more slowly than the docs recommend. Some people have said that dropping by 1mg is the best even if it takes a long time to get off it.
Sorry I can't help with the leakage thing though I can sympathise with sore bum syndrome! I do find that the painkiller codeine has a constipating effect on me though - so if pain and diarrhoea are problems still for you, it might be worth a try.
Keep us posted and stay well,
Gail
x

Hi Gail
Am due a doctors appt on Monday so will ask him about the codeine and the pred as I don't think it is doing its job. Have been on it long enough to notice a difference. Maybe someone can tell me if I am asking to much from the pred but I was going 10-15 times a day and am now down to 6 or 7. Is this as good as it gets????
Thanks
Scoop

Think the going thing varies with every individual.
Me two/three normally.
Never been how it was in the non crohns days.
Would hate to think how many times i used to go when i was really bad so i know how you feel.

Hi All Just to let you know been to see consultant who was not very happy to find out that I had not seen anyone since the operation 11 weeks ago and so didn't have all the info he needed.  Got to have a barium meal(whatever that is) and blood tests before he can do anything.  I'm still getting this sharp"sore" type pain by my belly button which he didn't know   was crohns or post op!   Just as I thought I was going to get help and answers I seemed to have gone backwards.  By the way I am a 56 year old which my daughter said I should mention cos age depends on healing.

Welcome anita, goosemum and anyone else I haven't said welcome to before!

@scoop - Leakage is a very occasional problem for me at the moment and I don't suffer from piles or other exterior symptoms so I can't help. I did find that having a bidet made me feel a lot better. I've moved house now and miss it, I wonder if you can get a grant to fit a bidet...

@anita - The barium meal is usually a mildly unpleasant and dull process. Drink some nasty gunk. Wait around a while. Get some x-rays taken. Wait around some more. Go home.

Nigel

Hi All

Have been back to GP and he is disappointed that the Pred has not kicked in yet and has put me on budesonide. Don't know much about these drugs. Is this better than Pred? He has left the Pentasa at the same dosage and has asked to review me in 2 weeks. I have been signed off work for another 2 weeks.
How many of you are able to work/hold down a job?
How long was your first flare up?
How long does remission last?
Sorry for all the questions but am scared and confused.
@ Nigel The bidet sounds like heaven for me at the mo. There are only so many baths you can have in a day.
Thanks for reading
Scoop

Hi Scoop, sorry to hear you feel are not getting any further forward, most of us feel like this at some point or other its a slow process.  I think budesonide is a different type of steriod.  I was on it last summer and it did help me but all went backwards when I came off it.  I feel that pred seems to have more side effects (sleeplessness and 'out of it' feeling) and I have been on Pentasa for over a year,  All steriods have to be carefully managed and reduced slowly, maybe you will be able to reduce pred and increase bude as time goes on.  You may want to ask your GP about calcium supplements if you are going to be taking steriods for any length of time, I take 3 a day but my teeth (never very strong anyway) are suffering big time, I spend nearly as much time at the dentist as I do the docs (very stressfull). At the moment I work part time (mornings) and seem to be manageing ok, yes I do feel very tired by early evening and most nights don't stay up past 9pm.  My employer is understanding about me being a bit late on occasions to to being 'hold up' in the loo and I have only had to have time off while I was in hospital and signed off after, so far so good, I'm one of the lucky ones.  As for the rst of your questions, everyone will tell you a diffent answer, we all have varying symptoms and respond to drugs differently, but knowing there are others who have been through similar things and know how you feel really helps.  By the way I am the same age as you and I think sometimes age does have an effect on healing but so does the state of your health to start with. Take each day as it comes and if its a good one enjoy it. Hope you start to feel some relief soon. x    

Hi Scoop,
The Budesinide is a steroid which is released specifically in your intestine so it has less effect on your whole system. I haven't taken it but have read about others who had good response.
I manage to work full time okay and I think most people do once they're being treated but everyone is different. I think it takes a while to find the right meds that work for you so don't despair - you will get there in the end.
I've had two flares - one lasted three months (no treatment) and the next one came after a year of remission and lasted eight months (again not treated because I wasn't diagnosed). I think there's huge variation in how long flares and remissions last. But with treatment you should get the flares under control and other drugs can help you stay in remission. The hardest thing is waiting while you're poorly. Have you asked your doc about an elemental diet (liquid drink) to replace some meals...or maybe trying to stay on low fibre, low fat bland foods...might get your symptoms under control more quickly?
Hope you feel better soon,
Gail

Hi All
Thanks for all your advice, it is much appreciated. I am still taking Budesinide and it is still not having any affect. Since I stopped taking the Prednisolone I am back up to 7-12 times a day. is this normal? Does this mean that Budesinide is not working? Should I ask to go on a higher dose of prednisolone? (I was on 30mg for a week then down to 20mg for a week and so on).
Sorry for all the rapid fire questions but am desperate now. Any advice gladly received.
Thanks for reading.
Scoop

Hi all,
I have just been reading everyones messages regarding the steriods.  When I was first diagnosed with Crohns 13 years ago I was put on 150mg of Pred.  I was on this for well over a year(it did nothing apart from mess with my mind - in a bad way). I can not take any sort of steriod because of this.  But I have noticed that people are talking about 20-30mg of Pred, is this the norm now?
I am just curious.

Cheers

Neilfisk

Hi All
Phoned the doctors today as am still feeling no better and couldn't make it for an appointment. Asked to be put back on the Pred and asked for the dose to be increased only to be told to go back to 20mg for 2 weeks. I have booked an appointment for Monday and am going to plead with the doc to try a higher dose as i am still going 8+ times a day and am really sore. Did anyone else have problems with doctors prescribing high doses of pred? Will keep you all posted.
Thanks for all the replies and support, so glad I found this site.
Scoop