Hello to all, I'm jboi85, but you can call me J. I'm 25, and I live on the Isle of Wight. I was diagnosed with Crohn's in 2001, after probably 2 years of pain, sickness and diarrhoea. Originally they thought I had a stomach ulcer, but after treatment for that failed, and many tests and examinations, a barium meal, and endoscopy confirmed Crohn's disease. I had a right hemicolectomy in June of that year, and after a difficult recovery, was relatively symptom free for about 3 years, for which I am eternally grateful. Since then however, I have steadily deteriorated, to the point I am at now, which I have to say is the most unwell I have ever been. I have many issues I would like to discuss and feel I have much knowledge which may help others. I look forward to comparing notes with fellow 'Crohnies', and hopefully may be able to advise somebody and possibly even make a positive difference, no matter how small to someone in a similar situation.
A little about jboi85
- Thread starter jboi85
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hi J, welcome to the forum. i'm glad you found us, as it sounds like you really need some support just now!
so sorry to hear you've taken steps backwards with your Crohn's - i really hope you can get things back on track again soon. what meds are you on? and have you looked at adjusting your diet?
so sorry to hear you've taken steps backwards with your Crohn's - i really hope you can get things back on track again soon. what meds are you on? and have you looked at adjusting your diet?
J welcome to the forum. A good place to give and seek advice. I couldn't deal with my CD without it. Glad you are here, sorry you are not feeling very well. I will ask the same as Dingbat.... have you considered your diet? Hope you get some good ideas here to try and hopefully get to feeling a little better.
Yes, it seems like a great site, with lots of helpful tips. As for medications, I am currently on 40mg prednisolone, 150mg azathioprine, 2g mesalasine (pentasa), co-amoxiclav, cyclizine for sickness, and oxycodone hydrochloride (oxynorm), and paracetamol for analgesia. I am a bit fed up with all the tablets I have to take, and I know it can take several months for some to take effect, but it just seems as if they aren't doing anything, even making me worse. Well, I say that, but the cramping has subsided a little, but now I am finding that my joints, especially my ankles and my right hip are getting more and more painful daily, my hip feels as though my leg is trying to pull itself off! And the painkillers I take, although very effective in providing me relief from pain, make me very unsteady on my feet, and I have stumbled/fallen on several occasions, once while holding my 1 year old girl, fortunately I managed to twist around and land under her, but it could have been a lot worse. I actually fell down the stairs earlier, well, half way and sustained a nasty carpet burn up my arm
But, oh well, could be worse, at least I can relax a bit because my pain is controlled. What I am finding it hard to get to grips with though, is taking it easy. I mean it's all very well and good for the doctors to tell you to take it easy, but in the real world it's not so simple. I have 2 daughters under 3 to take care of, and a house to run. I can't just sit there and let my girlfriend do everything, I feel guilty enough when I can't physically help because of being in such pain or being in hospital. You see my girlfriend has psychological problems which make things a little more difficult for her, and she takes meds which make her tired, so really I would be an awful person if I just sat and watched her do it all. I am on a low residue, low fibre diet, I avoid citrus fruits, pineapples (i LOVE pineapples), I try to avoid dairy, but find I can tolerate it in moderation. I am also avoiding spicy foods at the moment, as I have just returned from a 2 week stay in hospital because of a horrendous flare up (my 4th admission this year alone) and to put a cherry on top of that lovely cake, kidney stones (OUCH OUCH OUCH OUCH!) But even though I have this diet, I am still finding myself doubled over in pain after I eat, running to the loo what seems like every 5 minutes, and when it feels like it, it simply uses my stomach like a trampoline, and leaps straight back out, in a rather projectile manner! I'm used to it now, so to me it isn't the worst thing, but my daughters are starting to notice what's happening, and are worrying and even trying to help, which is heartbreaking. No child, especially so young, should have to worry about their grown-ups. The guilt of it is starting to get to me. Anyway, sorry to bang on about myself so long! What diet tips do you have that may be of use? And just having others who understand to share my problems with and talk to is, in itself a massive thing in helping me to feel better, thank you
But, oh well, could be worse, at least I can relax a bit because my pain is controlled. What I am finding it hard to get to grips with though, is taking it easy. I mean it's all very well and good for the doctors to tell you to take it easy, but in the real world it's not so simple. I have 2 daughters under 3 to take care of, and a house to run. I can't just sit there and let my girlfriend do everything, I feel guilty enough when I can't physically help because of being in such pain or being in hospital. You see my girlfriend has psychological problems which make things a little more difficult for her, and she takes meds which make her tired, so really I would be an awful person if I just sat and watched her do it all. I am on a low residue, low fibre diet, I avoid citrus fruits, pineapples (i LOVE pineapples), I try to avoid dairy, but find I can tolerate it in moderation. I am also avoiding spicy foods at the moment, as I have just returned from a 2 week stay in hospital because of a horrendous flare up (my 4th admission this year alone) and to put a cherry on top of that lovely cake, kidney stones (OUCH OUCH OUCH OUCH!) But even though I have this diet, I am still finding myself doubled over in pain after I eat, running to the loo what seems like every 5 minutes, and when it feels like it, it simply uses my stomach like a trampoline, and leaps straight back out, in a rather projectile manner! I'm used to it now, so to me it isn't the worst thing, but my daughters are starting to notice what's happening, and are worrying and even trying to help, which is heartbreaking. No child, especially so young, should have to worry about their grown-ups. The guilt of it is starting to get to me. Anyway, sorry to bang on about myself so long! What diet tips do you have that may be of use? And just having others who understand to share my problems with and talk to is, in itself a massive thing in helping me to feel better, thank you 
DustyKat
Super Moderator
- Joined
- May 8, 2010
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Hi J and :welcome:
Oh boy, you are certainly going through the wringer.
How long have you been on the Pred and what was your stating dose? Did you ever feel well on it?
Seeing that the meds don't seem to be working what are the docs going to do now?
What supplements do you take, B12, Calcium, Vit D.......?
Sorry about all the questions. Have a browse through the Food and Diet Forum and also the Wiki Forum, loads of info there. I hope you can get things sorted and find relief soon. Good luck and welcome aboard!
Take care,
Dusty
Oh boy, you are certainly going through the wringer.
How long have you been on the Pred and what was your stating dose? Did you ever feel well on it?
Seeing that the meds don't seem to be working what are the docs going to do now?
What supplements do you take, B12, Calcium, Vit D.......?
Sorry about all the questions. Have a browse through the Food and Diet Forum and also the Wiki Forum, loads of info there. I hope you can get things sorted and find relief soon. Good luck and welcome aboard!
Take care,
Dusty
Astra
Moderator
- Joined
- Jan 21, 2010
- Messages
- 5,870
Hi J
and welcome fellow Brit
I can't add any more except the prospect of a biologic? Either a self admin one like Humira or infusions like Infliximab (remicade)
I would've mentioned the low res diet, but you're already on it, it works for me.
Maybe you could ask about upping the Pred to 60mg for a few weeks, then taper?
You're no longer alone with this, any questions, just shoot, always someone here, and lots of friends too
lotsa luv
Joan xxx
and welcome fellow Brit
I can't add any more except the prospect of a biologic? Either a self admin one like Humira or infusions like Infliximab (remicade)
I would've mentioned the low res diet, but you're already on it, it works for me.
Maybe you could ask about upping the Pred to 60mg for a few weeks, then taper?
You're no longer alone with this, any questions, just shoot, always someone here, and lots of friends too
lotsa luv
Joan xxx
I am on 40mg pred, for 2 weeks, then tapering by 5mg a week. I started last week, have been on them a few times now, and I have always found that I still feel like crap on them. And I'm always hungry, even though I eat as much as I can! Now my situation has slightly improved since my trip to hospital, I was in constant pain, I mean constant for about 2 years, and now I only have a few bouts a day now, and when I eat/drink naturally! It helps too that we have found a painkiller that actually works, without making me sick! The doctors are trying to get the inflammation under some control, so they can investigate the extent of the scarring as I have 3 separate areas of bowel that are affected. The injections have been mentioned but my doctor said the azathioprine is usually more effective, so I decided that was the best option.
Hello xoxava, don't worry about me, I'm sure you have enough on your plate as it is!!! I don't mean to sound wet, but thank you everyone for making me feel so welcome here, it's a great help to know I now have others who are in similar situations to share/discuss problems with. I'd never thought of joining any of these forums, to be honest, I didn't even know what a forum was really! But it was my girlfriend who suggested I look for one, and I'm so glad I did. I look forward to getting to know you all and perhaps helping you out if I can with any problems
- Joined
- Jun 16, 2010
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- 167
Hi J. You will learn so much from this forum. When i first found it i just browsed and i learned so much more than i had from any doctor. Us guys are the experts. Any questions just ask! Whatever you are going through you can be sure the 'crohnies' understand!!
