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Help please :-(

Hi all,

I was wondering if someone could help me...

So basically I was "diagnosed" with Crohn's early 2009. Well, if only it was that simple!! 2008 was a pretty horrid year for things going wrong left, right and centre. We had a lot of stress as a family but I seemed to cope well until November of that year. I was vomiting or rushing to the loo after eating or drinking, completely exhausted and, understandably, feeling very sorry for myself. I went to see my GP who diagnosed me with gastointeritus and said I would be feeling better after 2 weeks. Provided me with a sick note and sent me on my way!

3 weeks later nothing had improved so I came to the conclusion that my doctor was wrong! I kept returning and kept being signed off. Eventually I was off for a total of 5 weeks. Luckily my work are very understanding and because I felt better after the rest I returned to work in the new year. My Stomache was still playing up but the vomiting settled slightly.

I returned to see a different doctor at my surgery who instantly referred me to a gastointerologist. I decided to utilise my private health cover to obtain quicker diagnosis... So I thought.. The specialist did some blood tests which showed a raised CRP of 28 and decided it sounded like Crohn's but wanted to check by performing a colonoscopy, then an endoscopy, then another colonoscopy, these all came up clear... So he performed a capsule endoscopy where he noticed scarring in my terminal ileum. This, to him, confirmed his initial diagnoses. Therefore I was put on a course of Prednisone. This did not lower my CRP or ease the symptoms. I just piled on the weight and suffered horrendous mood swings!

He then sent me for a MRE where they found scarring in the terminal ileum again, I was told this could only be one of two things, Crohns disease, or a reaction from drinking unpasturised milk in India... I've never been to india! I am then put on Azathioprine which makes me vomit, sulfalsalazine which I end up having an anafalactic relation to so am taken off immediately, pentasa which increases the diarehea. As you have probably guessed, I am someone that is allergic to many medications, my specialist tried every group of medication with me but no luck. He mentioned Humira but as this drug is rather potent and due to my history of reactions to other drugs he felt that the risk was too high.

I was then recommended to have a right hemicolectomy. I went to all the councelling, read all the horror stories but prepared myself to wake up and have a break from the pain and diarehea. However when I awoke, I was told by a nurse they had removed my appendix... Not performed a right hemicolectomy... I was confused but relived when told they didn't see any sign of the crohns so as I had scarring on my appendix this must have been what was causing the symptoms so I would soon be better. They also said it could have been IBS causing the diarehea as well.

5 weeks later, back to square one. Same symptoms, but discharged from seeing private specialist, went to see NHS specialist, told yes it's crohns, no its not, yes it is... Can't take any meds so they can't help me, if I have a flare up I hve to rest... CRP now 39 and stuck at home in bed!

My doctor has signed me off again as I am exhausted all the time and as I am unable to take medication rest is a must.

Has anyone else had a similar experience or have I just been unlucky with this?

Thanks
 
Hi there. I am the same...no drugs for me, I'm either allergic or suffer with intolerable side effects.

Have you considered an elemental diet? There are a number of elemental foods that you might be offered, I have been on Elemental 028 and now Modulen. I prefer the Modulen but others prefer Elemental.

These will help you gain energy and will give your poor insides a rest. It's not the easiest thing to do as you won't be able to eat regular food. But if you're in pain and have no energy, it's sure worth it.

Maybe worth a try?
 
Thanks for the suggestion. I am seeing my GP again next week so will ask for some advice around a liquid diet... Yummy ;-)

Thanks again. Glad I'm not alone with this. Although wouldn't wish it on anyone!
 
I'm so sorry to read of your troubles.

IBD dx's are sometimes very hard to get, some Drs seem to want a big flashing neon sign with an arrow saying "this is IBD!!" before they will commit.

Please feel free to stop by the Undiagnosed section, lots of us are going through the same thing.

:ghug:
 

David

Co-Founder
Staff member
Hi there and welcome to the forum, I'm so glad you joined!

Don't let anyone tell you it is IBS, IBS DOES NOT lead to scarring of the terminal ileum.

I agree 100% with Dawn regarding elemental/enteral nutrition. It has remission induction rates as high as prednisone as long as you stick with it.

Did they do a TB test on you?

And finally, I STRONGLY suggest you getting your vitamin b12 and vitamin D levels tested. People with Crohn's Disease are very commonly deficient in them and they can lead to some of the symptoms you have. When you get the results, get the actual numbers and let us know what they are as we can provide you additional insight thereafter. This is very important!

Again, welcome!
 
Thanks starGirrrrl. I will def have a look.

David - I know it's so frustrating being told its IBS when there are so many symptoms that do not occur in IBS!!

I was tested for B12 back in 2009/2010 and was told I was B12 deficient. Went through the horrible injections (one of my phobias) and when they tested me again 8 months later I had too much B12 so they stopped them! I'm not sure I've been tested since. Another frustration is calling the docs and speaking to the receptionist to get my results and being told they are "all normal" but when I ask what the CRP level is its always high (I always make sure I am feeling well when I have the tests done as I am aware colds, fly etc can affect this)

I think a big issue-not sure if anyone else suffers with this, is that I'm actually overweight. Most people I speak to about crohns are surprised as "the person they know lost so much weight" I know it's not impossible to be overweight with crohns but it seems this makes people doubt the diagnosis...although I did lose a stone in two weeks with my last flare up!
 

David

Co-Founder
Staff member
You can absolutely be overweight and have Crohn's Disease. It's not as uncommon as some might think and you'll find a variety of threads dedicated to it here.

As for the B12, well, I'd sure love to know what those two levels were. And yes, get tested again. And get the actual number :)
 
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