SubClinical Crohns

[doylep]

Hi

My first posting apart from my intro message a few weeks back..
This story has some links to a posting by David from Seattle earlier in the year on IBS and IBD which rang true to my findings/feelings.........
I did post a reply but didn't get a response so hence this new thread....

I was diagnosed (loose term for when GP ran out of tests, sidmodoscopy,ultrasound,barum enema, blood etc etc) with IBS in Feb 2010....
In a very depressed state and on 20 mg Citalopram... I sought other answers for my 24/7 pain in abdomen and lower back etc... I had no bowel issues as in D or C by the way....

BUPA private med tests in UK finally found two small erosions in my small intesine.. .....Fecal calprotectin levels however were <19 .... So by this test alone I would not have IBD.. ??? It was only the capsule pillcam picked the IBD up....
Now I am classed as having "Subclinical Crohns" and am being treated with Budenofalk (Budesonide) 9mg/day....
I am +5 weeks into meds but improvement is slow and i still have pains in muscles but thankfully with less abdomen pain
Q..how long do these meds take?
....my GI specilaist has me on 6mg tail off for 2 months and like many on this forum my life is on hold and I am not working now..... Hope the meds work over long term...... What I want to know is where I will be in two months time?

GI Specialist has said go on normal food regime as no link to food type? He wants me to put on weight..... Lost 3 stone in 6 months....

My pain is constant back pain, abdomen pain mainly in flanks.... coupled with weird fleeting sharper pain which moves daily from elbow to knees and sometimes toe joint... this almost feels like its on the surface skin rather than deep in joints...
Oh and some gum/jaw pain... and muscle pain which can be anywhere, arms, thigh and buttocks....Anyone else have this?

So in summary and my main point on IBS vs IBD is in my view its likely (as Steve indicated in his post) that many people like me with a GP IBS diagnosis are walking (painfully) around with subclinical Crohns.. its just not detected by some of the current tests run.....

Hope this interesting to someone?

Peter

NB I have no medical training this is just my personel view..

 

[DustyKat]

Hi Peter,

Sorry I can't answer as to how long the meds will take work. As far as diet is concerned many people find that some diet modifications are very helpful in reducing symptoms. Sure diet doesn't cause Crohn's but it can certainly exacerbate symptoms. Have a browse through the Diet and Food forum.

Roo's Crohn's was never detected by clinical testing so you are right to suggest that for some people they are walking around with undetected IBD.

Sorry I can't be of more help.

Take care,
Dusty

 

[DustyKat]

Hi Peter,

Me again! I couldn't find your introductory post to bump up so I will bump this one up.

Dusty

 

[Keona]

Hi Peter,

Yep, I have the feeling like I pulled a muscle in my right butt cheek every now and then. Feels like a regular pulled muscle and I cant pin point as to why since I don't do much these days due to not feeling very well.
Welcome to the forum. I am glad you are finally getting some answers. There are a lot of helpful people here who are very knowledgeable.
I hope you start to feel better soon.
Wendy

 

[Jennjenn]

Welcome

 

[Dexky]

Hi Peter and welcome!! Has anyone ever suggested gout for your surface pain symptoms? All the muscle aches and pains are definitely a symptom of crohns. If you read up on this forum, you'll see those mentioned often. You'll also read many stories about the difficulty in getting dxed. You are in good company here. Someone will be able to advise you about the meds. Hang on, glad you are here!!

 

[Guest]

hi Peter - welcome to the forum i've moved this thread to the Your Story section so our members will know you've joined us. your first intro post will have been in our Purgatory section - a filter area for new registrations which we've set up to spot spammers joining - and the posts in there disappear once you're fully registered.

i am sorry to hear of the trials you've been through in trying to get a definite diagnosis.. unfortunately some of us do have to keep pushing for years to get a real answer for our symptoms

like has been mentioned above, your aches and pains do sound like Crohn's issues, and not every Crohn's patient has the common diarrhea/constipation - because it's an immune disorder it can affect our bodies in so many different ways.

i'm glad you joined us, and i hope you find some treatment soon to get your quality of life back.

 

[dustydshook]

Hi Peter welcome to the forum. You will find that this place will become a place of refuge to you. It is the best.

I do not know nor have I heard of Sublinical Crohns. I will have to look that one up.

Crohns is a slow disease to diagnose and slow to get under control. It is a disease that has to be managed but sometimes can't be. Look it up on the internet and do lots of research so that you can understand it better but even then it will not be fully understandable. It is a complicated disease and you should understand everything that it can do to you body.

I wanted to put in my two cents about the food and wish someone had done it for me in the early days.

This is the only thing I can think of to compare the food thing to. It is like having food allergies. Everyone is different what you can eat I can't and what I can you can't it is different for everyone. Some foods can put you in a flare. Your immune system will see this certain food or foods and think it is an enemy it will then go into full defense mode and attack it causing a build up of white blood cells in your bowels. Which causes scar tissue. Which causes pain and lots of it. You should keep a journal. Every day write down what you eat, what meds you take(even over the counters like ibuprofin and such), what time you took them and yes the dreaded bowel movements. Take it to your dr. everytime you go. Then if you start having severe pains you can see what food caused and know not to eat it anymore EVER not even when you are feeling good. Keep lots of Ensure or Boost or a similar product available and liquids like Jello and Chicken broth. If you are having a flare ie.. lots of diareah and/or pain go to a liquid diet and let your bowels rest for a few days or until the pain diminishes.

If you have bad D. keep extra clothes and baby wipes handy where ever you go. Get some stretchy pants for you pain and bloating days. Some days I wake up a 10 and go to bed a 14.

I hope I have helped and if anyone can add please do. Just hang in there and try to keep your head high.

 

[Astra]

Hi Peter
and welcome fellow Brit

I understand how you are feeling with this frustrating confusing dx!
I'm on budesonide, started on 9mg, now on 3mg every other day. I'd been on Pred prior to that. since I've been on budes, I have suffered the most horrendous joint and muscle pains, headaches and jaw aches. I have posted a new thread about my jaw ache, very interesting reading!
as regards to IBS, here's a link about the differences for you to compare.

http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

hope you get some answers soon, just keep insisting, maybe ask for some Pred? Budesonide is very mild in comparison, only a 10% derivitive of Pred, but is systemic.
lotsa luv
Joan xxx

 

[doylep]

Thanks for your replies....
Dusty/Dingbat... thanks for bumping my story up...didn't realise how forum worked so thanks for that...
Dexkey...I have considered gout in the past and was taking Vit C hoping this would reduce uric acid levels.... no idea if it really helped...... and then GI suggested 1g/day Ascorbic Acid (Vit C) wasn't good for my intestine erosions and to lower it..... so I stopped it all together.... Its not so bad at the present time..maybe budes are affecting it?

Dustydshook
Subclinical Crohns is newish term and means erosions and inflamation are not yet full blown enough to class as full Crohn according to my specialist... although symptoms similar...don't think you will find much on web except research into "trying to find pre Crohns symptoms" which throws up same term. Thanks for food tip... I am very confused as what to stay away from as my symptoms are pretty consistent what ever I eat... Just given up Cows milk again to see if Goats better for me...
Astra101 I was offered Pred as after three weeks Budes having limited impact...but decided to stay with budes to find out if in time it will work... maybe wrong decision! I guess I am better than a month ago.... every week seems to feel like a roller coaster sometimes feel like I am worse than yesterday not better... i.e. its not a linear improvement and thesefore it feels like its not working most of the time...

All... What does end of treatment and remission feel like? Do you have to live with some pain 24/7 or does this mean you are not in remission?

Thanks for all your comments and warm welcomes..

Peter

 

[Astra]

Hiya Peter

regarding remission, yes I think I'm in remission now, I have no Crohns symptoms, all I have is withdrawal symptoms from the steroids and headache from gnashing my jaws!
It has took 7 months with this current flare up to get to here, prior to that, I had 5 years of remission
good luck Peter, you'll get there soon
xxx