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21 and newly diagnosed with crohns, advise please?

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Northstaffs91

Hi I was diagnosed with crohns disease 3/4 months ago. About 2years ago is when I started noticing changes and the amount of times I'd go the toilet through out the day and my stomach bloating and getting pains in my knees at night. I wasn't sure what was going on and just tried to egnore it, I got used to it for a year until it got worse. I spoke with my family and found out all my aunties on my dads side have some sort of bowel or intestine problems also including my nan. I went to the doctors and they gave me IBS tablets which made me sick. After more tests and a colonoscopy I got diagnosed with crohns. Got put on prodnisolone, pentasa and calcichew. Taking these didn't make me feel good, I bloated loads worse than I have done before, looking 6months pregnant and really bad pains. I stopped taking the tablets and went back the hospital 2weeks ago. They decided it could have been the pentasa tablet. So I'm currently taking just the prodnisolone tablet and the calcichew, which so far is going ok.

If anyone has any advise for help, I would really appreciateit.
Thank you
 
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CheerBear12

Hi I was on prednisone, pentasa, infliximab for crohns/ulcerative colitis I suffered with it for 4 months before I done anything about it just got immodium from my doctor... Never helped one bit just made it worse. 2 weeks later I got admitted and stayed there for 2 days short of 6 weeks. Nothing worked for me and I had to have an emergency life saving operation to remove all of my bowel my bowel could of burst at any time which would of killed of me. before my op my stomach was so swollen i looked 9 months pregnant too. I hope they put you humira I've heard loads of good things about that drug. Hope they get you sorted and in remission. Keep me posted.
 
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CheerBear12

I was 20 when this happened so know the feeling and I've been diagnosed with indeterminate colitis which means they don't know whether I have Crohn's disease or ulcerative my bowel was that bad they couldn't tell it affected all of it and was breaking away with ulcers all through the layers affecting all of it. It wasn't doing me any favours what so ever. Keep me posted plz
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hello Northstaffs91 and welcome to the forum :)

Pentesa seems to be a med commonly precribed initially but as it was designed more for ulcerative colitis in mind rather than crobn's most here find that it does not settle the tum.The pred is good at hitting the inflammation and I am pleased that you have been put on a calcium supplement whilst on this as this will help protect your bones. As the pred is only supposed to be used short term I should think another maintainence med will be mentioned when you next see the doc - when is your next appt booked for? Another thing to ask you doc about is having fairly regular checks on your vitamin levels, deficiances in this area is common with crohn's and low levels can cause a host of other problems so it is best to keep an eye on these. Also has anything been mentioned to you about the diet side of things?

AB
xx
 
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CheerBear12

Hi and welcome I'm not on any more medications since they operated:) I'm going in for more surgery in may to make my ileostomy permanent :(:( don't want it but its best decision as I don't know what's wrong wish it was different. Nope I can eat what I like I need to build myself don't want too lose weight again. I was only on the medication three or four weeks. How are you? Congrats on pregnancy:) how is everything going?
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
CheerBear12 said:
Hi and welcome I'm not on any more medications since they operated:) I'm going in for more surgery in may to make my ileostomy permanent :(:( don't want it but its best decision as I don't know what's wrong wish it was different. Nope I can eat what I like I need to build myself don't want too lose weight again. I was only on the medication three or four weeks. How are you? Congrats on pregnancy:) how is everything going?
Click to expand...

Everything is going very well thank you, out of interest why have the docs not got you on any meds? What is the upcoming surgery for - to remove more scar tissue or inflammation?
 
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CheerBear12

Hi, I think it's coz they removed all of my large bowel which was causing the problems it wasn't doing me any favours what so ever and I have been fine since they done it. So I think they think I don't need to be on any:) no its to remove my rectum and anus so I won't get any muccus or blood from my behind it'll be sewn up #barbiebutt. I'm scared of everything.. It's the last part of the op.
 
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