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