Hi all, Well once again iam on the dreaded prednisolone. My consultant wanted me off the before i get surgery hopefully within the next 3 months. I have lasted just under 2 weeks. I have had severe stomoch pains all weekend painkillers got increased just 3 weeks ago aswell. went to my GP and he put me straight back on them. Iam abit gutted as all he done was felt my stomach,took my temp and said well its for the best. He then took bloods and asked to see me again on wednesday. He said if iam still the same on wednesday he will send me to the hospital for tests. I dont think after 2 days the pain will go but the doc thinks its is.
Nicola

Prednisone is the only thing I use now. I have been on so many other drugs that gave me wicked side affects!  the thing is,'is to make sure your on the prednisone at a proper dose for the right amount of time. You should also have your CBC and crp checked. The crp is how my GI and gp monitor my disease. If your blood work comes back with your white blood count high and shows signs of infection, you should be put on antibiotics as well as a high dose of prednisone. If you do have infection(which your blood test will show)You should also have blood work done on a regular basis until everything goes back to normal. Also no stringy meat, no corn or popcorn at all ever. No hard veggies, no veggies that have skins like tomato or bell peppers(unless u r gonna take the skin off)no wheat or high fiber stuff until u are back to normal. be on a very bland diet. Buy boost or ensure to drink, it has all your vitamins in it.'3 a day. They have lots of flavors. Good luck. Btw I've had crohns for over 16 years. My mom also has it.

Hi Nicola, having been at the wrong end of GP & Consultant disagreeing ... I'd say you've got two  different docs treating your symptoms, but in different ways. All I can add is that if you don't feel that you are getting anywhere, make your mind up and go and see another doctor. I wish I'd done that sooner. No doc knows everything, and just because it worked for someone else it doesn't mean it'll work for you.    You are going to be seeing someone for your Crohn's probs rest of your life, try finding one you like and you are happy with. There's an awful lot of specialist doctors out there who have very different approaches  to Crohn's find one that suits you. I was over ten years under a consultant who slowly get totally  p*ssed off with me because, despite his best efforts I wouldn't get better! In the end I thought, well it's ok  for him to get fed-up with me and try his best to  ignore me, but I need to do something here or I'll just get worse and worse, so I went out and found a new consultant. Had to travel over hours to get there, but in the end it was worth it.  It's your body, don't be like me and thing b*gger that 10 years down the tube, wish I'd moved earlier. Best of luck    

well folks went back to the doctor today and he contacted the hospital. I then recieved a phone call tonight to say if i was still sufferring on Friday i would get admitted into hospital and the would operate on me sooner rather than later. Iam in the next fue months due do get my colon,bowel removed.
This may sound strange but half of me wants to be in pain so i can get it over and done with but the other half of me would prefer to wait. Iam at the moment doubled up in pain and its not nice.

Here in Alberta Canada at the university of AB hospital they will not operate on you unless there is no other way. They would rather I stay in the hospital for a few weeks with no food and  getting iv antibiotics and steroids until it settles down. You do not want them to remove your bowel and get a bag.That is not the way to go,they can admit you in the hospital and treat you there as they would me here.  My cousin had hers removed a few years ago and has had nothing but problems.   I hope you dont  get the operation and that you get admitted and treated to calm your disease down. You should be on antibiotics and a good 50 mg of prednisone to start. Praying for you and that you dont get surgery because it's not a cure or a treatment.

Hi There, this is my last resort now, i have tried all medication but none seem to work as i also have a liver disease. I have also tried modulan which did work for the 3 times i was on it then i started to get all my symptoms again. Antibiotics dont seem to work that well for me either.  The only thing that works for me is steriods but my consultant does want me on them for to long. I have known a few people who have had the opperation and they seem to be ok. Iam trying to stay positve rather than negative.
All i want is to have a happy life and not woory about pain and where the nearest toilet is i just want my life back as iam feel iam still young well am 30 this years. lol

Hi all, well i went to the hospital yesterday cause i was still in pain, they took bloods and a xray of my stomach and all was fine. They didnt think it was bad enough to admit me and do the operation sooner rather than later. They said i didnt look in alot of pain i explained this would be because i have been taking Targanac,Tramadol and paracatamol. So they decided the best option would be to give me oramorph and paracetamol and send me home. When i asked what was causeing the pain i was told it was just my crohns and to see my GP if it got worse.

Nicola

Hi Nicole. Sorry to hear you're suffering. I don't really understand why the hospital would do an Xray for a Crohns patient. It's been my experience that Barium tests, CT etc are more likely to show up problems.
What dose of Pred are you on? Did the GP say to stay on it for the meantime?

hi nicola i am so sorry ur not doing well but i can sympathasise with u as i am in the same boat at the moment x i am also waiting to go in to hospital to have my large bowel and rectum removed but am having a bad flare up at the moment that only iv steroids seem to help x doctors and consultants sometimes have different veiws on treatment so u should maybe see ur gpo again x im lucky my gp is brilliant but can be hard to get an appointment with x i am also scared to go to my gp and tell him i am still feeling awful. as i know they will admit me and i have a ten year old daughter at home due to the holidays so dont know what to do x i am exausted all the time in pain (also taking oramorph) and am at the toilet anywhere up to ten times a day x i feel useless asi have no eneergy to do anything with my daughter x im sorry if im ranting a bit but it helps knowing that i am not the only person in this situation x x
hope u are feeling better soon x x x x

Hi there,Iam currently back on 40mg prednisolone again and i think i will be reduceing it by 5mg per week but no-one has told me. I have tried to explain that i basically just need pain relief in the middle of the day as my targanac has to be 12 hours apart so i take it at 8am and 8pm but i fine between 12-5 thats when iam really sore. The oramorph is working a treat but to be honest iam scared of all the painrelief iam filling my body with as i have PSC which is a liver disease, but on the other habd i canot suffer any more.

Hi Nicola

You sound like your treading water with no land in sight. Know many times the thought surgery was appealing especially when there's
no clear path for a normal life. Before you leap into anything I would suggest experimenting with your diet
to see if you can reduce your symptoms enough to have a normal life. I find avoiding sugary food and eating lots
of yoghurt helps.


J

Hi Nicola
Agreed, it sounds like you are being very much left in the dark about a lot of things . My Pred was upped to 40mg, but I am now reducing by 5 mg a week, but they have started me on Azathioprine which will replace the Pred.
I think in your position, I would arm myself with a list of all my questions and concerns and go back to see my GP. And if you feel you are not getting anywhere with that person, see if you can change your GP. We have several at our surgery, an usually you see them on a 'pot luck' basis, but when I was getting nowhere and had been ill for 6 months, I asked to see the one doctor who'd been recommended to me and she was the one responsible for me getting my diagnosis.
It is your right to feel confident and happy with your doctors. I hope you can get something sorted out soon.

Hi There, i have tried so many different meds of the years but as soon as i get used to them it causes a problem, i to was on aza but it reduced my white cells to much, i tried humira but that gave me periciditas iam curently on 25mg mercaptopurine as soon as that gets increased i suffer from really bad stomach pains. I have also tried changing my diet went gluten free, been on modulan it only works for a short time then as soon as i go back to food my problems start again. I dont eat any fruit or veg cause it makes me worse. I just feel iam going round in circles all the time, oh and to top it off my gp doesnt think its a good idea to give me oramorph because of my other painrelief, sorry for ranting on but i know all you guys understand what iam going through.
Nicola

Rant away! Sounds like you have every reason to rant. It kind of looks like you have been through all the drug options and I'm sorry they've not brought you remission What are the docs saying now? Is surgery your only option now?

I see my stoma nurse tomoz for the first time then i see the surgeon for the 2nd time on the 21st so i will just have to wait and see what he says i suppose. Iam still waiting for a appointment to come through for my GI. Yes my GI said on my last meeting that surgery was the next option as everything else had failed.

Hi Nicola

Before you commit yourself to surgery I would recommend trying these out, doctors best digestive enzymes, they
might improve your health enough to avoid surgery. They have worked for me and you only have to take 2 a day.
Unlike most medication they don't have any side effects.


J