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Confused - what should I expect now?

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
 
Its not unusual for an MRI to not show anything but there is active disease lurking in your bowel. Ask for your inflammatory markers(ESR,CRP,platelets) but also a faecal calprotectin test to be done- if these are raised then it will show you have active disease.
I also suggest you have your amylase checked as aza can cause pancreatitis. Also your blood count checked to make sure your white count is not low due to aza and you are having infection causing the shivering.

Hope you start to feel better soon.
 
Hello JennyT,

I can't really add anything to that, just wanted to give you my support and hope that you can arrange those tests and finally get results that are more helpful to you, wishing you better times ahead, take care and big hugs to you. :ghug::ghug:
 

Jennifer

Adminstrator
Location
SLO
Hi JennyT, how are you doing now? I noticed in your signature that you mentioned taking 90mg of Entocort and mentioned in your post that you had nasty side effects while on it. I find it hard to believe that you were on Entocort at that dose and wonder if maybe it was Prednisone instead as it is possible to be on that high of a dose or I'm wondering if that's just a typo in your sig and you meant 9mg instead. :p When was your last scope?

Yes joint pain can be Crohn's related for sure. I recommend seeing a Rheumatologist for the joint pain even if you don't have RA.

As for vomiting like that for so long, in the future going to the hospital may be best. Your body needs fluids and nutrients to be able to heal let alone function. With symptoms like that though it sounds like you may be dealing with a partial blockage (I say partial because you're still passing stool). Partial blockages can become full ones though and can be deadly so even though the MRI didn't show what it needed to (or maybe some dip was looking at the images and didn't know up from down) you have to listen to your body and seek immediate help if this happens again.

If you haven't already it would also be good to have your vitamin levels tested since it sounds like you aren't getting enough nutrition with all the diarrhea, vomiting and lack of eating plus you're extremely tired. http://www.crohnsforum.com/wiki/Vitamin-and-Mineral-Deficiencies

Take care and keep us posted on how you're doing. :)
 
Thanks so much for your encouragement and advice.

My gastro specialist appt was today, he explained that I hadnt gotten the best continuity of care due to the change from Waikato to PNth districts (in NZ) so I think he was saying sorry.

Today I had 7 vials of blood taken for a gazillion tests and 13 X-rays taken!

I will be having a CAT scan and a camera through my tum and gut again soon. There are also the other unmentionable samples to be deposited in due course :)

The Dr is fairly confident I have developed rheumatoid arthiritis in a number of joints as a result of the Crohns and it will depend on how far it has progressed whether I get treated through a specialist or my GP.

Looks like at last someone is listening and Im getting the right treatment.

It wasnt prednisone, definitely Entocort. Im really not sure if I made a typo as Im off it now and have nothing to refer back to - I just know it was rugged and for the 9 months I didnt even feel like I was me any more as well as all sorts of funny physical stuff. The Dr today did mention in passing I was probably on it a bit long?? That was when we was saying that Waikato hadnt followed through with the course of treatment planned and Palmerston North hadnt picked it up - stars, no wonder Ive been so ill - no-one knew I was out here!!

So - a few things to look forward to (not!) and hopefully if not an opportunity for beter management of the Crohns and RA - at least I will know whats going on.

Thankyou for caring enough to post - cant tell you how great it feels not to feel so alone. Jen
 

Jennifer

Adminstrator
Location
SLO
Aww, I hope you don't have RA. I know there are two blood tests that check for it so hopefully those tests were done with your vials. There are many medications that treat both RA and Crohn's such as Methotrexate, Azulfidine, Imuran, Remicade, Humira and Cimzia (at least those are the ones from the list I know treat both, Prednisone does as well but its meant to be short term only). http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020/DSECTION=treatments-and-drugs

Generally people take 9mg of Entocort for about 3 months. I have taken it longer than 3 months (about a year) myself but that was over a decade ago. Now days steroids aren't used for so long because they may cause more harm then good when taken long term.

Glad you're getting lots of testing done so you can get treatment soon. :) Keep us posted.
 
Ahhh - your comments make sense of the Docs remark "you were on it a bit long" Bet I was meant to be on that dose for 3 months and it ended up 9 cos I shifted speciailsts and they lost me! I hope I dont have RA either but I cant imagime what else could be causing so much pain in so many joints all of a sudden - such a bummer. HUG X
 

Jennifer

Adminstrator
Location
SLO
It could be osteoarthritis. I have that in just about every joint and the pain started at my hips then went into my back and now feels like its everywhere. All this happened in less than a year. I was tested for RA by my Rheumy but I'm all clear. My x-rays showed osteoarthritis in my hips and spine and my Rheumy did a visual and pressure test in the rest of my joints and said that its pretty much everywhere. It can be hard to walk or even sit. Feels best to just lay down for me. When I was on Humira it got rid of my joint pain completely. I've switched meds since and am now on Methotrexate which seems to help some with the joint pain but not fully just yet as it can take a few months to fully do its magic.
 
OMGosh that is really encouraging! You sound just like me at the mo - pain everywhere - cant even get out of a chair or bed without rolling about like a walrus let alone lifting stuff and getting dressed (torture) LOL I have all my fingers and toes crossed now.
 
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