Balancing act being undiagnosed

[PVail]

So ive been ill for about three years and no confirmed diagnosis. Ive had three colonoscopies ,various xrays scans and two many blood tests , you know the drill. I started with a sharp pain probably every couple of day s with diahorea and then turned into full time right side pain, back pain and pencil shaped pooh, or glue ,blood ,general mess and alot of fevers. Pain is roughly between my navel,appendix and under my right rib cage.
Shortly after I eat I get ill and it continues like a vicious circle. The only thing the doctor says is that during test the right side had a lot of spasm and the left side of the lower bowel was very red. Lots of biopsies no result.
Sometimes when i eat it feels like the food aint goin down as if from the stomach down is closed ? I get sores form my ass to my mouth and when its bad my eyes are sore.

Ive been on Asacol 800mg three a day for six months. It has made a difference and stools are more solid but the pain is pretty intense at times( problably cause the stoolis more solid)

Ive increased water intake and now I am actively sorting out which food is noticably making me feel worse.

So Fizzy drinks, sweet stuff, fryed food,steak or red meat and of course spicey foods. this isnt hard to figure out ,when your raw inside.

I do feel that taking an active role in this condition is helping in that in keeps you positive and that can only be good. However I have almost lost my job over this illness and have had to stop my musical career as i cant bring a loo onto the stage can I.

Started taking wheatgrass capsuels to see if they will ease the symptoms.
Everyday I have several very bad times and the pain and discomfort are pretty unbearable. I sleep 4 hours maximum before pain wakes me up.
So where do I go from here as the future is not so inviting ,being undiagnosed means no treatment .

I think I have an Inflamatory bowel problem and that it is progressing despite the Asacol and diet changes. I remain active and try to figure it out to get through the day at work. How long this will last i dont know So thats my story

 

[David]

Hi PVail and welcome. Ugh, you've certainly been through a lot, you poor thing. You may want to check out our Undiagnosed Club as people there can certainly relate. Based upon what you described, I agree that you may have some sort of IBD. Have you had a CT scan? What about a pill cam? Have they checked your vitamin D, B12, and folate levels?

I wish you nothing but the best and hope they get this figured out soon!

 

[PVail]

Thanks David

Had a CT scan a couple of years ago but then they where lookin for a kidney, appendix or gaul bladder problem as they are in the same area. I suppose this hadn't really developed yet.
No havent had a pill cam or vitamin D B12 or folates done.
Unfortunatley my faith in the health service is twindling as I feel I am being pushed down the line as this condition is not life threatening even though it is a life sentence.
I now feel embarrasssed goin back to my GP as he only wants to treat symtpoms and is not interested in finding the root cause. But i find it hard to believe that three years ago I was pretty healthy and now I am in pain all day . I suppose this is a difficult condition to diagnose and I will probably have to wait to see how it developes. Thanks for your reply

 

[Angrybird]

Hello PVail and welcome to the forum. It is very disheartening when you feel you can't rely on your doc to fight your corner.... perhaps time to get a new one? I would keep pushing and pushing about this, how long ago was your last test? Things can change fairly quickly so they cannot base how they handle your symptoms today on results that may be months old. I do hope things can get sorted for you soon and let us know how you are getting on :hug:

 

[bjeffrey]

PVail...Hello...

YOU ARE ON THE RIGHT TRACK! Congratulations!

Continue seeking out food and/or allergic reactions you may be experiencing. Bowel rest is a GOOD THING! Check out http://www.breakingtheviciouscycle.info/

I was tested extensively on food allergies and discovered I had them!

Check out the British Society of Gastroenterology site at http://www.bsg.org.uk/
It will help you with MORE INFO. Specifically, they publish the GUIDELINES on treatments too http://www.bsg.org.uk/clinical-guidelines/ibd/guidelines-for-the-management-of-inflammatory.html

Good Luck and know you are not ALONE!

 

[PVail]

Hello PVail and welcome to the forum. It is very disheartening when you feel you can't rely on your doc to fight your corner.... perhaps time to get a new one? I would keep pushing and pushing about this, how long ago was your last test? Things can change fairly quickly so they cannot base how they handle your symptoms today on results that may be months old. I do hope things can get sorted for you soon and let us know how you are getting on :hug:

Thanks Angry bird.
Its so much a relief to talk to people who understand what this is about. You are right ,I do need to change doctor but that is not so easy. My last colonoscopy was six months ago. even though i was undiagnosed i was put on Asacol and it has helped although I do feel it is gettin less effective . I have to take more to keep the pain down to a bearable level.
Today I got a letter to say im goin to the Pain Clinic and I have also got a review with a consultant regarding my problem. Both of which I have never seen before. This is like a re occuring dream where you just keep doin the same things over and over. I do hope that they both are more commited to finding the source as I am at a lose to the lack of follow through with the GPs
But for now I am making a big effort to try and stay calm and deal with it as it comes.

 

[bozzylozzy]

Hi pvail.. i feel your pain!
Im undiagnosed too.. ive had IBS for years.. then i slowly became very ill and ended up having my appendix removed (they think i had a grumbling appendix for years as there was lots of bad scarring from repeated inflammation) however... as you've probably guessed. i still get pain (also on left side too) and my blood shows slightly elevated CRP and ESR. but now i dont have an appendix.. so im going for my 1st colonoscopy on 6th feb.. eek! But i worry ill be no closer to a diagnosis of anything am just fobbed off with IBS again

good luck! And keep us updated x

 

[Angrybird]

PVail, let us know how you get on with the pain clinic, my mum is going to one of those because of her severe back problems and has been very encouraged by what they have said and done so far. Hopefully the consultant can look at things from a new angle as well. Have they given you actual appt dates?

 

[PVail]

Hi pvail.. i feel your pain!
Im undiagnosed too.. ive had IBS for years.. then i slowly became very ill and ended up having my appendix removed (they think i had a grumbling appendix for years as there was lots of bad scarring from repeated inflammation) however... as you've probably guessed. i still get pain (also on left side too) and my blood shows slightly elevated CRP and ESR. but now i dont have an appendix.. so im going for my 1st colonoscopy on 6th feb.. eek! But i worry ill be no closer to a diagnosis of anything am just fobbed off with IBS again

good luck! And keep us updated x

Ive had a few colonoscopies,there nothing to worry about . If anything they give you a clearer picture and some relief that you are been seen to. Personably i would feel more positive in that if there is any issues then they are going to make a descision and maybe you will get better treatment . The main thing is to try and deal with each day in a positive way. From my last one i was put on Asacol. It has made an improvement to my life. Its not an answer but its a start.
Anyway good luck with the test and do keep in touch.

 

[PVail]

PVail, let us know how you get on with the pain clinic, my mum is going to one of those because of her severe back problems and has been very encouraged by what they have said and done so far. Hopefully the consultant can look at things from a new angle as well. Have they given you actual appt dates?

Yeah 9th of feb for the pain clinic and 9th of march for The consultant who is apparently a specialist in bowel issues. Just have to wait and see. Im goin to see my GP on monday to have a honest chat and from that i will decide weather to move or not. Not looking forward to it but i feel its for the best. My well being is paramount and i do not want to get any worse because of lack of care.

 

[Angrybird]

A very good idea, there is always a chance the GP thinks they are doing a good job and doesn't realize that they are actually exascerbating the problem. I hopes this goes well and keep us updated.