- Location
- New Zealand
I live in the country in NZ and my GP knows little about Crohns, the specialist is a long drive away and has a long waiting list. I am so greatful for this site.
I was misdiagnosed for much of my adult life until 18 months ago at age 55 when a massive 24/7 flare created enough concern for the right tests to get done and at last a DX. (Also lost my job and had to go bankrupt)
My guts was a big mess but not my stomach altho I had continued to have trouble with mouth ulcers, swollen gums and swelling down the sides of my tongue for many years as well as weird swellings and resulting growths around my anus (hmmmm)
I was very very ill 18 months ago - the pain was horrific and I couldnt eat so I fainted a lot and spent a lot of time in bed keeping really still to minimise the pain. I had almost always had diarrhea but now ran water like a tap.
I was given Entocort which had a whole raft of bad effects but also lessened the pain, the water stools to some degree and surprise surprise the swellings and bugs in my mouth as well as losing the swelling and pain in my thumbs, wrists and heel/ankles and bum! OK - off the Entocort I came after 9 months as it was causing some evil stuff too, and onto 150mgs of Imuprine with a cross over period of 3 months. Then I had an MRI which came back showing no signs of the disease.
Thats the kicker and the reason Im writing cos I sure didnt FEEL like there were no signs of the disease. At that time I was on a gluten free/sugar free/lactose free/paleo diet and I was still experienceing regular flares of pain at about 60% of full noise, and yellow water or baby food stools 5 - 15 times a day and sometimes uninvited. I was getting spasms 2-3 times a week and all the mouth problems, swollen bum bumps and painful thumbs and wrists had returned.
This has gotten worse and I very suddenly began to experience really bad pain in my shoulders and elbows and the hand pain became worse, bad headaches often, pain in ankles/heels again and at times in my knees, hips and lower spine, This pain is terrible and leaves me unable to do the most simple things some days and sleep is really hard to achieve. It does wax and wain which is weird - and the right side is always a little worse than the left. (Mostly it waxes!!)
Also - my tum seems to slowly be unravelling its wellness - food was becoming a trigger more often to deep aching pain 24-48 hours and then last week I got a full on 100% pain OMG bout over 5 days - still not quite right.
I was away from home and contracted the worst pain (you know what Im saying!) couldnt move, was semi sort of concious only, started vomitting bile over an over, sweated, then got the major shivers teeth chattering uncontrollably for several hours and then it slowly slowly abated to severe squeak making spasms about every 30-45mins. This happened over 5 days, 2 of them I barely remember, all I had to eat was 1/2 a lemonade iceblock over that time.
I dont think that is a one off - something to look forward to again Im picking.
QUESTION - is that normal when an MRI shows no signs of the disease? Im diarrhea ridden always, have constant low grade pain off and on, tired tired tired and then the joint pain (Is that crohns?????) which has turned me into a cripple as well as a poopy pants. Not to mention the escalating occurances ending in what happened this week.
HELP PLEASE any advice/assurance/commiseration or derision greatfully accepted :smile: Jenny HUGXX
I was misdiagnosed for much of my adult life until 18 months ago at age 55 when a massive 24/7 flare created enough concern for the right tests to get done and at last a DX. (Also lost my job and had to go bankrupt)
My guts was a big mess but not my stomach altho I had continued to have trouble with mouth ulcers, swollen gums and swelling down the sides of my tongue for many years as well as weird swellings and resulting growths around my anus (hmmmm)
I was very very ill 18 months ago - the pain was horrific and I couldnt eat so I fainted a lot and spent a lot of time in bed keeping really still to minimise the pain. I had almost always had diarrhea but now ran water like a tap.
I was given Entocort which had a whole raft of bad effects but also lessened the pain, the water stools to some degree and surprise surprise the swellings and bugs in my mouth as well as losing the swelling and pain in my thumbs, wrists and heel/ankles and bum! OK - off the Entocort I came after 9 months as it was causing some evil stuff too, and onto 150mgs of Imuprine with a cross over period of 3 months. Then I had an MRI which came back showing no signs of the disease.
Thats the kicker and the reason Im writing cos I sure didnt FEEL like there were no signs of the disease. At that time I was on a gluten free/sugar free/lactose free/paleo diet and I was still experienceing regular flares of pain at about 60% of full noise, and yellow water or baby food stools 5 - 15 times a day and sometimes uninvited. I was getting spasms 2-3 times a week and all the mouth problems, swollen bum bumps and painful thumbs and wrists had returned.
This has gotten worse and I very suddenly began to experience really bad pain in my shoulders and elbows and the hand pain became worse, bad headaches often, pain in ankles/heels again and at times in my knees, hips and lower spine, This pain is terrible and leaves me unable to do the most simple things some days and sleep is really hard to achieve. It does wax and wain which is weird - and the right side is always a little worse than the left. (Mostly it waxes!!)
Also - my tum seems to slowly be unravelling its wellness - food was becoming a trigger more often to deep aching pain 24-48 hours and then last week I got a full on 100% pain OMG bout over 5 days - still not quite right.
I was away from home and contracted the worst pain (you know what Im saying!) couldnt move, was semi sort of concious only, started vomitting bile over an over, sweated, then got the major shivers teeth chattering uncontrollably for several hours and then it slowly slowly abated to severe squeak making spasms about every 30-45mins. This happened over 5 days, 2 of them I barely remember, all I had to eat was 1/2 a lemonade iceblock over that time.
I dont think that is a one off - something to look forward to again Im picking.
QUESTION - is that normal when an MRI shows no signs of the disease? Im diarrhea ridden always, have constant low grade pain off and on, tired tired tired and then the joint pain (Is that crohns?????) which has turned me into a cripple as well as a poopy pants. Not to mention the escalating occurances ending in what happened this week.
HELP PLEASE any advice/assurance/commiseration or derision greatfully accepted :smile: Jenny HUGXX