What on earth is going on?

[Motherhen]

Firstly I'd like to say a quick thank you to everyone who has posted before, I have got so much info purely though reading your very informative posts.

I'd like to ask if what is happening to me has happened to anyone else and if so did you finally get diagnosed with anything?

So far after attending A&E last year with abdo pains and being referred for a Colonoscopy my life has gone a bit mad, I was having very frequent ribbon poo (sorry) and pain about 2 inches to the right of my belly button. My Colonoscopy looked normal except form mild inflammation around my Ileo ceceal valve. Biopsies taken showed inflammation. I have since had an small intestine barium x-ray, (which to be honest was worse than childbirth and I never want another one of those) during which I had intense pain around my usually painful area and they could not get the barium to flow past this point, despite rather vigorous manipulation.

I have also recently had an MRI which my consultant said was 'pretty much' normal. He has now decided that as my calprotectin is within normal ranges that he thinks crohns is 'extremely unlikely'.

So although it would be great if it isn't Crohns, it would be nice to know why I spend so much time in the loo! (Up to 10 times daily sometimes).

He tried me on Asacol which I reacted badly to and stopped taking after a week ( severe bruising issues) and am now on my 3rd day of budesonide which although has cut down bathroom trips to 2 a day from the second day of taking it, it seems to have made the painful bit a bit more painful..

So, that's where I'm at..

If anyone can offer any words of wisdom, or even reassure me that I'm not a hypochondriac, which I'm beginning to suspect.. I'd be rather greatful.

 

[bozzylozzy]

First of all, welcome to the club! And thankyou for sharing your story.

im sorry to hear that you are at a bit of dead end. has your gastro recommended anything else at all?
I have no experience of being on asacol.. so cant help you there...

Have you seen a rheumatologist at all? Many find (including myself) that they are usually helpful and tend to think outside the box.
there are many illnesses than can cause inflammation in the bowel that may be auto immune. so it is probably worthwhile requesting a referral to one of those. Rheumatologists treat patients with IBD too..

is there any history of IBD in your family?

Hang in there.. we are here to help anytime you need us and feel free to vent too xx


ps: you know your body.. so i doubt you are a hypochondriac.. but with the stress of being ill its easy to doubt yourself.. (i doubt myself all the time) but try to stay strong

 

[Motherhen]

Hello Bozzylozzy and Thank you for your reply,

I'm waiting for my next appointment in March so will be asking many questions then.

There are various bowel problems in the family, diverticulitis and celiac disease but no Crohns etc.


I have mentioned seeing a Rheumatologist to the consultant as I do get joint pain in my elbows and thumbs but he said that it would not be connected. Maybe I should speak to him again about it and push for a referral.

I have noticed that you've also had you appendix out, I'm positive my tummy problems stem from my appendicectomy. I started having problems about 6 months after mine was removed, I originally thought the pain was scar tissue forming until the multiple loo trips began.

Thanks for the reassurance though.

xx

 

[StaceyC96]

Hi

your definatly in the right place

im the same as you, i have gone through the colonoscopy and the MRI both came normal now been fobbed off with the old crap of IBS from GI, however i have lost 2 stone in about 3 months i too go to the loo from 2-10 times a day and they are always snotty (sorry) watery and loose and sometime have red blood in my BM, im woken up every night in agony im lucky to get more than 4 hours sleep a night
the pain is at time so unbearable im on the bathroom floor curled up in agony over xmas i was pretty bad but over the last week i have had sickness heartburn been in agony with abdo pain and pains under ribs im only eating a few hundread cals a day as the dietitian has put me on the terrible Exclution diet which is no wheat no gluten no dairy no nothing i can eat chicken rice some veggies and limited fruits and along with the sickness im eating bland to try and stop the sickness ( whick has stopped so far today )

my joints are aching and sore my old knee joint problem is back so i getting clicking swollen knees.
i seem to be picking up bruising from i dont know where must be the lack of energy and food that making me forgetfull and clumsy

my next appointment is in 6 weeks as this new diet has to be carried on for 6 weeks

i tick all the boxes for CD yet im in the IBS box which as anyone on her will tell ya and even my GI told me IBS does NOT keep you up at night or make you bleed

so as i was advised on here jump through all there hoops. do as they tell you but make them listen its not in our heads and that you need help

if they can give you anything to ease the pain then take it as i have been going through this for about 8 months now ( bowel probs for about 10 years ) and been given nothing but Buscapan and Meberine which dont work at all

and any rants and concerns jump on here, everyone is amazing and supportive with a weath of knowledge and very caring

your not alone
xxxx
stacey

 

[bozzylozzy]

as stacey says above - do all they ask you to do eg: diet changes etc.. then if it doesnt work, they only have themselves to blame.

Even if your joint problems are not related to your bowels, you still need to see a rheumatologist to have your bad joints treated! ideally you should say to your GI that you want to get your joints "fixed" and then when you finally see a rheumatologist - tell them about your bowels too.

you should get tests for connective tissue diseases like lupus..

you mention coeliac in your family.. have you had an upper endoscopy to check for coeliac? because blood tests are not conclusive. biopsies is the only way to properly diagnose it.

I had hoped that my appendix being removed would be the end of my problems - but i guess not ive had bowel issues since i was 8yrs old! and im 25 now.
symptoms did definitely worsen after having my daughter 2yrs ago...

oh and just another point about referrals (are you in the UK?) i went to my GP regarding my knees.. and they were adamant that physio would fix it because my blood tests for inflammation were borderline. my physio then referred me to a podiatrist because im flat footed.. then my podiatrist actually listened to me! and got me referred to the rheumatologist! lol.. it was a long process - but like stacey said - jump the hoops and you will hopefully end up where you want to be

 

[dannysmom]

If anyone can offer any words of wisdom, or even reassure me that I'm not a hypochondriac, which I'm beginning to suspect.. I'd be rather greatful.

I do not have any words of wisom unfortunately ... but did want ot welcome you and say you are NOT a hypochondriac. You have too many symptoms and also some abnormal test results to prove otherwise ... just not enough yet for doctors to figure it out. (Seems like same boat as my son.) Please keep us posted on the budenoside. Interesting it helped the D but increased the pain. Good luck!

 

[caytee]

I don't have any words of wisdom either, but I also experience joint pain and have, like the people on this board, have undiagnosed abdominal issues. I like you have severe joint pain and have been tested for what seems like every rheumatological illness under the sun by my rheumatologist. I recently saw a second rheum and he directed me to further look into my persistent GI issues as a possible cause for my woes. With his advice I visited a GI specialist and discovered mild inflammation in my ileum. I need further testing (beyond endoscope and colonoscopy as neither reached my PAIN area ULQ) to confirm Crohn's or whatever the hell is going on. But sometimes it helps for a new set of eyes to see your case. At least this has been my very recent experience.

Hope you get a dx soon, or some alleviation from your pain.

 

[gatheringroses]

First, you're not a hypochondriac! Don't let anybody tell you that you are.
Secondly, have you considered celiac? If you don't want to wait for tests, I'd suggest going 100% gluten free for 2 weeks, and seeing how you feel (warning, though: you can't get tested for celiac after going GF, but you can always eat gluten again for a few weeks, and get the offical dx). If your poops tend to float, if they are long, if they are light in colour, or if they are L-shaped, you may wish to check it out.