HELP - lucky or not ????

[shell]

Hi everyone, please help I think I'm going crazy !!

I was diagnosed with Crohn's Disease some 26 years ago after receiving an horrendous laparoptomy at a young age and sent home with a huge scar and some steriods. Fortunately I did really well on my own thank goodness and am so relieved the medical profession now know so much more about this horrible disease.
In December 2009 I had long term diarorhea, with pain way down in my left groin area and ended up in hospital. A simple sigmoid showed active crohn's in the rectum and colon so was treated with steroids.
March 2010 pain worse (toilet ok) so back in hosp where my stomach started to swell aswell, so after double checking a CT scan they found a narrowing on my right side and I ended up having an ileum resection, removing 2 feet
of 'old dead disease'.
15 months later I am still suffering with the original worsening left side groin pain, have lost my job due to sickness, and a further 2 hospital stays, 2 MRI's and a colonoscopy show nothing apart from a Calprotectin test with a reading of 212 confirming inflammation in the bowel but they can't find anything!!!
Aswell as the side pain I feel totally exhausted most of the time, and my buttocks, knees and legs hurt too. (toilet is fine).
Can anyone give me any hope as am totally fed up and want my old life back !!!

 

[ameslouise]

Hi Shell - Sorry you are having such a hard time after so many years of remission.

Are you still taking steroids to help with the pain and inflammation? Have you and your doctor talked about any long-term meds? Can you take anything for the pain?? Have you had your blood checked to see if you are anemic or low in B12?

There are so many new meds out there since the time you were first dx - there's a lot you can try! What has your doctor suggested?

Hang in there and be persistent with your doc!

- Amy

 

[xJillx]

Hi Shell and welcome! It's a shame your years of remission had to come to an end! But with the right treatment, hopefully you can find remission again soon. What medication are you currently taking? Perhaps it is time to try a new maintenance med. I would certainly discuss all of your treatment options with your GI - there is so much more today than when you were diagnosed over 20 years ago. Good luck!

 

[Ian]

Hi Shell!

Are you due to see your GI soon? If not you should get in touch, it sounds like you need some help. I'm sure there's something that can be done since it sounds like there are a lot of meds you haven't tried yet. Sorry to hear you're ill after such a long off period, but I have to say it's reassuring to know that Crohn's disease has the capacity to go into remission for so long! Hope you can get back to that place soon

 

[shell]

Hi guys,

Thanks so much for your quick replies. I am a new user and so very grateful for your kind comments. I have been taking Gabepentin for my legs and have in the last 2 months been given Ampytripelene, Duxeltine and Oxycontin morphine tablets and liquid for the pain and am under the hospital pain clinic. I have been on prednisalone 4 times in 12 months but the pain gets worse when reducing amount. Have another colonoscopy booked in March.

 

[Ian]

Glad to hear you have a cononoscopy soon. If assume this will lead to an opportunity for you to discuss the results and your treatment plan with your GI? If not, make one. Sometimes you have to be pushy

You might do well on a biologic like Remicade or Humira (look at the Treatment section for more info on these), but I don't know if your GI would be willing to prescribe them if the colonoscopy doesn't find anything again? Getting evidence of the active disease can be such a struggle sometimes! Fingers are crossed for you

 

[AndiGirl]

Welcome Shell. I would have to agree that it is time to see the GI doctor. We look forward to hearing how you are doing.

 

[ameslouise]

Hi Shell - Wow, that is quite a cocktail of meds! The antidepressant and anti-anxiety meds can both cause tiredness and fatigue. They also both have stomach pain, nausea and vomiting listed as possible side effects. Is it possible they are adversly affecting your Crohn's? Many people actually use Ampytripelene as a Crohn's treatment and find it very effective in treating spasms.

Anyway, good luck. Hope you get some answers soon! -Amy

 

[shell]

Hi everyone, just to let you know I had another colonoscopy today and it was clear again !!
This is good news but i am so desperate for an answer to this chronic pain I must admit I was disappointed. Have been told a Barium X Ray is next for the small bowl. Then who knows. The specilists have the calprotectin test which is way too high and I have the pain but where from ????? Sick as a chip. x x x

 

[peaceandsmile]

Hiya,
I am terribly sorry that after years of remission have to undergo such pain and take such a bundle of medication!
I am sorry you are not doing to well and have pain. That is great you had no bad results on your colonoscopy, but hope something will show what is causing your pain. I also suggest you try to see a good GI. Anyway, I wish you the best and hope you will be cured soon!<3

kisses, Aya

 

[ameslouise]

Hi Shell - Glad it was clear, but I can understand your frustration in not finding anything! At least then you would know what you are dealing with!!!

Hang in there until the barium x-ray, which will hopefully bring you some relief.

- Amy