• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Feeling Confused

Hi ive been reading this forum for a few weeks now, and hoping that someone can help me.

Ive been suffering since i left school (About 7 Years ago) with the usual symptoms: Extreme tiredness, generally feeling unwell (majority of the time), lower right adominal pain, high temp, nausea, mouth ulcers and erythema nodosum.

Ive had numerus bloods, xrays, ultrasounds over the years, many have come back normal, so i feel im totally loosing the plot and i get quite down, but i know my body and know something isnt quite right. On one of the xrays they found a batwing so went to see a specialist who told me he couldnt find anything so i put it down to the fact i have alot of phlem, Is this a sign on crohns? He also sent me for a ct scan which didnt show anything on my lungs but showed a grumbling appendix so i finally thought i found an answer.

Next step went back to my gp who referred me, i now have a nice understanding doctor hes done some bloods (Havent got the results yet) and sent me for an colonoscopy (Ive had one done in the past by a useless doc) i wasnt quite sure about going as the past one came up fine, anyway he talked me round and i went. After a dreadful prep at the hosp my consultant was doing the test so i was quite happy. He went further than my last one and found some inflamation and biopsied it along with biopsies of the appendix which looked a little irregular. Whilst in the room he said it looked consistant with Crohn's.

Anyway ive had my results it says ive got active chronic inflammation aswell as intestinal spirochetosis of the appendix (Havent got a clue what that is) which he thinks is an incidental finding. He then went on to say that these findings suggest IBD. So does this mean a diagnosis?

Im also going for a pill cam next week which he suggested, i know this looks at the small intestine so will this comfirm the diagnosis or if it comes back clear rule it out. Im slightly worried as if it comes back clear im back to stage 1.

Im also after a bit of advice on medication, ive been on prednisolone for my erythema nodosum as it got quite bad, but i had alot of side affects and even felt like i was having a heart attack at one point and went to A&E. It helped alot with both my legs and stomach pain but my symptoms came back after a few months, is there any other meds that i could try as i have a feeling my consultants going to put me back on them when i next see him. Im also not sure when i am next going to see me and left me without medication and since the last colonoscopy ive been quite ill, but been getting alot of constant migranes that dont go away whatever i do, is this another symptom?

Many thanks in advance for any help you can give (Sorry about the long post) :)
 
Hi Cat,

Really sorry to read all that and the struggles you are going through. I really hope you finally get some answers soon. I went through something similar all my symptoms related to crohns and I was hospitalised following blood work at the Doctors, I was given an awful consultant who was adamant i had an infection, even though the consultant who did my colonoscopy said it was crohns! After kicking up a fuss I got a new, excellent consultant and was diagnosed properly. So it's good you now have a Consultant who sounds like he will actually help and be good!

Write down everything you want to ask the consultant when you get your pill cam results and make sure you ask him/her everything...I have found this helps me, as when your in that brief appointment you need to make sure you get all your questions answered.

In relation to meds, I hated prednisolone, I put weight on, got a massive moon face and started growing a tash! It really got me down! I have not been well for a while but point blank refused to be put back on those steroids, I have been on a different steroid called budesonide (or entocort) and these have a lot less side effects, so maybe you could ask for them.

Sorry I can't help on the other parts of your question. Really hope you get answers soon x
 
Top