Undiagnosed where I am now

[Blu's Tale]

Sorry this is a long story.

My problems started back in June when I noticed I was going to the loo way too much. In July I took my son into town and things where so bad I had multiple accidents in the one day so I went to the doctor the next day.
My GP referred me for a colonoscopy. Had my colonoscopy on 6th September and on my report it stated
'Mild patchy inflammation of Villi in TI with single aphthous ulcer. Await histology. If histology shows inflammation, will benefit from starting mesalazine and IBD referral'

well the histology took 6 weeks to come back. Called my doctors they advised it showed very mild inflammation and referred me to IBD, when I asked what it could be my doctor was not convinced of Crohns but said not IBS definitely not colitis but it looks like IBD. Saw my consultant 4 weeks ago bearing in mind this all got bad in July and we are now in mid October and things have started to settle back down again. My consultant said he was not convinced I have Crohns he thought IBS advised I take fybogel and colpermin. Started taking the fybogel, it makes me feel very sick but does help to reduce toilet visits, the colpermin helps with cramps but doesn't touch the pain. Consultant also referred me for MRI and faecal calprotectin test. The MRI was normal and the day I did the faecal test was the first day in months I had had a normal bowl movement that came back at 30 so I'm normal levels. Went back yesterday to see my consultant he said although I am still having problems he doesn't want to put a label on what I have he believes it's IBS not convinced I have Crohns. When asked about my colonoscopy he said that ulcers are normal in that part of the bowl, didn't acknowledge the inflammation and said he hasn't see the pictures from the colonoscopy he would have to do another one if I am still worried about Crohns. My symptoms are:

Going to loo 4-6 times normal day bad day upto 12 times good day 1-2

I have blood shot eyes most mornings

I have dull pain that doesn't go away on my left and right side of my bowl which can get unbearable at times

I on occasion have a very small amount of blood in my poo

And almost constant lower back pain

And tired all the time

My options from my consultant where to take fibre tablets or 1 Imodium at night for possibly rest of my life or referral to dietitian to see if we can control it with food.
I feel like a hypochondriac and just don't know what to do I'm so lost just feel like I'm not really getting any answers, anything explained and going round in circles

 

[fuzzy butterfly]

Hi so sorry your suffering so,getting a diagnosis can be like getting blood out of a stone sometimes.. i would say it would most likely be a form of ibd not ibs. Im afraid you will have to keep on at them untill you get a definate diagnosis. Sorry you are having to go through this. It can be most frustrating but dont give up hassling them untill you know what is going on.

 

[Blu's Tale]

Hi so sorry your suffering so,getting a diagnosis can be like getting blood out of a stone sometimes.. i would say it would most likely be a form of ibd not ibs. Im afraid you will have to keep on at them untill you get a definate diagnosis. Sorry you are having to go through this. It can be most frustrating but dont give up hassling them untill you know what is going on.

Thank you

 

[Clash]

Have you investigated the lower back pain with a rheumatologist?

I'm going to tag maya142. There are some joint conditions that occur with IBD. But there are also some joint diseases that have gut inflammation as a component.

Maya142 has more knowledge about this. Hopefully she'll be by.

 

[Maya142]

Does the lower back pain get better with movement and worse with inactivity? Do you have morning stiffness? Those would be signs of Spondyloarthritis. It is a type of arthritis that is associated with Crohn's and can also cause mild gut inflammation and ulcers by itself.

Spondylitis.org has a lot of good information. Other common symptoms would be hip pain or heel pain, though really any joint can be affected.

Like Clash said, seeing a rheumatologist might be helpful.

 

[Blu's Tale]

Hi just a little update after another bad couple of weeks I have now asked my drs to refer me to a different consultant for a second opinion. Will keep you up dated

 

[ronroush7]

Hope you get some answers soon.

 

[Blu's Tale]

Hi I wanted to update you all.. I have been for a second opinion today and my new consultant believes I have the early onset of Crohns and has started me on a low dose of steroids I have to have 3 a day for first month, 2 a day for the next month and 1 a day for the last month and then I go back again for next step. Thank you for all your help and support xxx