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End of tether...

end of tether...

im 22, have coeliac disease and follow a lactose free diet. the lactose thing because i had ongoing diohrrea(* not spelt right) and they tried me on the lactose free.and have been suffering chronic lower right flank pain coupled with back ache. also, loss of appetite (lost 2 1/2 stone in a month) and this has been ongoing since sep 08. now... i went into ER cos of pain, fever and tender stomach and not able to eat for days and they whipped out my appendix cos that how bad the pain was at the time. since then iv had colonoscpies, barium x rays a ct scan and all have shown fecal impaction. in my gp's and my own 'humble' opinion i think this is due to the months and months i spent on 'trying' different pain med: starting of with 3months on co-codamol 30/500 maximum dosage a day, moving onto tramadol: maximu dosage a day. As far as im away both of which cause constipation which leads me nicely on to change in bowel habits: to go from running to toilet up to 15 times a day to barely 3 times a week.so when i got those tests done and they said "you're just constipated" "thats what's causing the pain" i simply couldnt believe that that could be causing the precise pain in my side which,i identify with all the pain descriptions you have all described. so my tests came back 'clear my also gp told me this coudlnt be as they couldnt see colon clearly due to 'impaction'. my colonoscopy was in 2008 BEFORE my appecectomy came back clear for anyhing however he one i got in summer 09 could not be completed cos quite frankly it was excrutiating. he didnt get round to the side he was supposed to be investigating. he refused to repeat it even tho the pathologists reports state that thre is evidence of 'mild patchy inflamation'. i was starting a new job in new year and at the time i was taking targinact, and decided i couldnt take it anymore as i would be cutting people's hair. so my gp took it upon herself to try me on 50mg prednisolone, tapering it down every 5 days till on a maintenance dose of 10mg a day until box was finished. 2 days after finishing, i got my original pain, my mouth filled with ulcers and my nausea returned. so when i returned to gp again, it turned out my recurring urine infection had returned, and she decided to put me on same dosage again until my new specialist told me he was goin to repeat colonoscopy because of my progress on steroids..so now im off them again in order for any existing inflamation to show up and pain is back tenfold, iv all the withdrawal symptoms of coming off steroids and im extra pi**ed off that i now have a big moon face and severe bloating. what are your thoughts and advice on anyhting i have mentioned?does any of this strike a chord with anyone else?advice on the symptoms, dealing with the pain management, and withdrawal woudld be great. Also any ideas on what would be the next stage of treatment if it turns out to be an ibd?
 

Crohn's 35

Inactive Account
Hi there and welcome to the forum!! You gotta long name lol... I think you should seek a second opinion, your track record sounds almost like mine. All your symptoms are Crohns related, adn I have had Crohns symtoms 30 years 17 dx... I have patchy inflammation and if they dont think that is enough for pain, maybe they should talk to my Gi... It angers me when some Docs have an ego the size of the moon and not help you through your pain and get the treatment that you need. I have the exact same thing and I am suffering but not as bad as you. I have CT scan and blood work coming up. Dont give on this, you could also have IBS and Celiac disease is a gluten free and lactose free diet. You dont get mouth ulcers.. sorry to ramble I see why you are so frustrated. Please see a another specialist so you can get out of pain and get proper treatment! Keep us updated ok!
 
Hi there, welcome. :) I'm sorry i don't have much to offer, but i'm sorry you're having so much trouble finding an answer to your symptoms.
 

imisspopcorn

Punctuation Impaired
:welcome:.........I think Long name is going to stick. You'll have to tell us about your screen name sometime.

I agree with Jetta Lady. A second opinion is a great idea. Also I suggest requesting all your medical records. All the test results and doctors notes. Especially the one that says there is patchy inflammation.(That is a hallmark sign for Crohn's).....Take all this info with you to the second opinion. Good luck.
 
lol my name is niamh ni mhaolain (its irish and pronounced neeve nee whale-an) :) thanks for your advice,i have colonoscopy soon so i will hopefully have answers soon..i will keep u updated..thanks again
 
Well it sure sounds like a good ol' Irish name.lol You don't mind if we call you Niamh do you?

Welcome to the forum of old Crohnies.
 
Welcome Niamhnimhaolain , need pratice in typing :) Sorry to here about your troubles. Has anyone mentioned anything about your Kidneys when I had mine swollen it was causing a lot of pain in that area too maybe ask what they think. I don't know much on pred. I'm still on 35 tapering but i do know I hate it fat face and the rest of me moody and depressed on and off and harder time focusing.Hang in there and keep us posted. Hope you get better answers.
 
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