Ask for all patient test results...

grannyh · Post by **grannyh** » Sat May 15, 2010 9:53 am

After getting the run around when CC first struck.. I started asking for copies of ALL tests from any doctor I went to. I had always gotten copies of blood work.. just to have comparison even if I didn't know what it meant:)

Getting copies doesn't always prevent another doctor from asking for the same test.. but you might glean information from full reports your doctor has gotten from testing agencies. If you don't understand all that is on the report.. and you have a general practitioner you trust.. you can ask them to interpret the tests for you especially if the specialist hasn't explained everything.

Even after getting my diagnosis and providing it to a hospital on admittance and to every doctor who seemed to troop into my room... I was ignored! Told the diagnosis was wrong! Then discovered one doctor actually removed the diagnosis from my file at the nurse's desk. I had another doctor (he seemed like a young kid.. but he had a great sense of humor) replace the copy at the nurse's desk and had him check to see if it disappeared again. That way we were able to determine who was removing it! Turns out it was a GI doc who was determined to prove to me I didn't have CC.. I was merely celiac and he would cure me. I had him barred from my room and got out of the hospital as soon as I could.. got the cute young doc to discharge me:)

If nothing else.. I could look at my collected files and know I wasn't really nuts.. I did have a valid diagnosis that many many other doctors I went to didn't believe. Thank heavens my family doc believed it.. he didn't know anything about this colitis.. but told me he was not uncomfortable with joining this forum.. since the folks here probably knew more than he did about the illness. When I was diagnosed there was even less information out there for doctors about CC than there is now.
grannyh

Stanz · Post by **Stanz** » Mon May 17, 2010 1:35 pm

Absolutely, we should all ask for copies of every doctor visit, every test result, and we should keep a record of our own research and what led us to ask for tests. Having access to this information has been invaluable to me. I look back on it now and just scratch my head that nobody saw the "big picture".

Reviewing patient records for patients who have chronic "undiagnosed" conditions should be a CORE CLASS for med students, IMO.

Your experience with this is yet another validation that young doctors vs old is critical. Old doctors have no dictate to remain educated on new research and few have the time or interest or lack of ego needed to stay current in their field.

grannyh · Post by **grannyh** » Mon May 17, 2010 2:07 pm

Wouldn't want to blast all older doctors.. my family doctor is as old as I am.. although he didn't know what was wrong with me.. he got me to a researcher/physician/GI doc to find out what was wrong with me. He also is very aware of my unusual gastric problems when he prescribes ANYTHING. Although he doesn't know anything about entocort.. after I had been on it a couple of years he agreed to prescribe it.. so I didn't have to spend my day getting to the GI doc... 2 hours each way. The GI doc said there was no reason for me to come back.. there is no other treatment for me.. since entocort works.. and no blood tests or any other non invasive test to see how I am doing. GI doc says as long as I am doing ok..no reason to make the trek to him:)

Anything to do with docs.. is all about trust.. I had some really nice docs who were clueless as well as supposed specialists who had no clue what was wrong with me.. other than I needed to see a psychiatrist since none of the "accepted treatments" had worked. That one darn near hospitalized me with massive doses of fiber!

We are basically on our own with our colitis.. so we best be the best researchers that we can.. as we are our own guinea pigs:)
grannyh

Stanz · Post by **Stanz** » Mon May 17, 2010 3:02 pm

Well, good for your doctor for at least getting you to a doc that is current in education, however, if you are still on steroids, and your young GI Doc says as long as you're doing ok..no reason to make the trek to him, well, that concerns me.

Any steroid is not w/o risks and nobody should be on steroids forever. Steroids are a short term solution to a major illness/crisis from what I've researched. I have friends who are permanently damaged by steroid use that should have been short term, but weren't, and now their MD's are all too happy to dx fibromyalgia - which IMO is a completely BS dx for "pain they can't explain, but you answered yes to x # of symptoms they asked you so "VOILA - you have the latest drug company dx disease - fibromyalgia!!! We have drugs for that!!! Reality is that nobody listened or researched or dx what was wrong w/them in the first place.

I trust no-one at this point, and certainly not my MD's. Reading through my records is absolutely maddening. Anyone with a functional brain and minimal medical education should have seen a trend if they even remotely cared, but they didn't.

Sorry, I am in a really black space lately and feeling hopeless. I'm tired of paying for incompetence and resent having to be my own doctor. I'm not homeless or in a war zone - guess I should feel grateful?? What a whiner I am.

We should all be outraged by the lack of competence we've had and paid for.

grannyh · Post by **grannyh** » Mon May 17, 2010 3:42 pm

Entocort is a synthetic steroid... I had a doctor OD me on steroids (prednisone)for a back injury and ended up in the hospital. That experience let me know how dangerous steroids can be...

Entocort doesn't release til it gets where it works best. The dose is miniscure and one usually only absorbs 10% of that.. I am old and not worried about absorbing 10% of 3mg a day of synthetic steroid.

I went through many hospital visits for dehydration, went to more doctors than I care to remember to find out what was wrong with me. Entocort was not available in the US when I finally got a diagnosis and when it was available I was afraid of a "steroid".

Entocort does not work for everyone, I am one of the lucky ones. I am also fortunate to have insurance that makes entocort affordable.

Getting fed up and falling into a pit happened often.. when I was in my worst place... I decided what the heck.. try the entocort .. :) It was that or curl up in a corner and cry... I was out of options and tired of being sick.

You will find your way... something will work for you too.
grannyh

Joefnh · Post by **Joefnh** » Mon May 17, 2010 4:31 pm

Stanz I'm sorry that you are having so much trouble with this disease and doctors as a whole. I think I have an appreciation for what you are going through. I spent the past 10 -12 years dealing with "fibromyalgia" but with very little GI symptoms. I had all of the fatigue and joint pain and it was ruining my life, stealing time from me every day. Mild pain medications helped somewhat but was no substitution for a real treatment. Basically the doctors shrugged their shoulders and gave me pills. That's no way to live.

With me I was having a horrible December with the FMS symptoms and then the D started with a vengeance, and it took until April to get a diagnosis of both CC and Crohns disease.

I was not happy that it took so may years to get a diagnosis but was happy that there was a treatment that worked; unfortunately that was steroids, of which I was not happy about but agreed to try and I am very glad that I did. For the first time in 12 years I feel great no pain, except for some residual GI pain as my system hopefully heals.

I can fully understand being in that dark place where hope is lost and frustration mounts.

In researching Entocort it became clear that this was the best first line option for me as it fundementally stays in the GI tract acting more or less like a topical ointment. That's not to say that a small amount (roughly 10%) does make into your system and over a long enough time can cause issues, especially at the initial 9mg dose. I am looking forward to fully tapering off of this medication with the help of a correct diet.

I am glad that I found this site and realized that diet pays a major part in the healing process, with the goal of no medications in the long run.

There are several people on this site who can share more about their dietary experiences including many MC friendly recipes (thanks Gabes). I am just starting down that road this week.

Hang in their Stanz and remember after all is said and done, you are your own best doctor and advocate.

Best wishes

--Joe

Gabes-Apg · Post by **Gabes-Apg** » Mon May 17, 2010 5:11 pm

Connie

you are not a winer. your vent is more than justified. Sorry you are in a black space, you work soo hard and embrace life wonderfull, i hope the sun shines again soon.

We are reliant on these so called professional opinions, to go through so much angst and upheval for 'nothing' is frustrating.
I have actually been relieved the by my MC diagnosis. It explained 3 years of continual 'unwellness' i wasnt sick enough to be in hospital but i wasn't healthy and fully functioning.

Stanz · Post by **Stanz** » Mon May 17, 2010 5:29 pm

grannyh, I don't know what difference there is between synthetic steroids and others, all I have seen is that it is difficult to get off of either one.

Joe, I have successfully stopped my symptoms w/o drugs and being GF since last August has stopped nearly all body pain issues. I was dx w/Fibro and pretty much every arthritic condition in the last 15 years. I didn't mean to present here on this thread as a newbie, this has been a 15+ year search for me to find answers.

I am just having an angry and depressed day where my "new" research just shows little progress for us MC'ers, I'm a caterer and I've posted many recipes on Dee's Kitchen. Just really tired of being glutened, in spite of my diligence, this last weekend. Just really tired in general, of dealing with this for so long.

Stanz · Post by **Stanz** » Mon May 17, 2010 5:42 pm

Gabes,

Yeah, guess I am venting and I am truly in a black space. I don't know if I'm just tired of work or tired of life at this point.

It was a relief to have a dx finally after over 15 years of being sick, and I'm doing great, actually, w/my homeopathic meds. so I shouldn't be so PO'd. Just am in a really angry phase here.

Gabes-Apg · Post by **Gabes-Apg** » Mon May 17, 2010 5:49 pm

it is a probably a combo of everything!

tired of work
tired of spending every minute trying to protect yourself from gluten!
tired of the extra effort and planning to manage diet and all the other whole of body symptoms we get

i am not being patronising when i say, Take a breath, feel the hug from down under, and vent away.
We are allowed to be mad, frustrated re this demon. I was soooo mad when i saw the pathetic article re lactose intolerance

Joefnh · Post by **Joefnh** » Mon May 17, 2010 6:08 pm

Stanz, congrats on being able to treat this without meds that's always best. In my case I had a double whammy with the Crohns present in a good portion of my small intestine and the CC in my large intestine. When the Crohns flares and is not treated for long enough, it can cause enough damage requiring surgery to have part of your bowel removed (yikes). I figured the meds were a good option at that point.

I think both Prednisone and Entocort are just different types of synthetic steroids. The Entocort just has substantially less systemic effects outside the gut.

Having the MC on top of the Crohns has presented a couple of challenges. My hope is that the diet may very well also help the Crohns eventually. I am not sure of that point but I still need the diet for the MC (CC).

Loosing the dozen years frustrates me also. It took a flare, which I never experienced before to clue the doctors in enough to take a look. I have talked to 2 co-workers with Crohns and they had no problems with stopping the Entocort. I think the problems in stopping the medication with the disease still not in control makes it quite hard. In my conversations with them they did stop, then took a one of the salicylate medications for a while to maintain remission, but that's for Crohns. Tex can probably help clear up the differences between Crohns and MC treatments.

From what I have read on this site is that at least for MC you can use the diet to allow for healing of the gut, as you are an example of.

I think for me the diet is going to be an 'adjustment', It seems almost everything has gluten in it. I am still getting my head around the legumes and soy; I was already not consuming any dairy.

Thanks for the recipes that you posted. I am suddenly finding myself in a position to cook more than ever.

Take care.

--Joe.

Stanz · Post by **Stanz** » Mon May 17, 2010 6:13 pm

Gabes,

Thanks for the hug from down under, although you truly don't want to hear me vent away. It truly is a combo of all you listed and more.

Congrats on the recognition of your new job status, I hope this is what you want in relation to TK et al.

Connie

Stanz · Post by **Stanz** » Mon May 17, 2010 6:26 pm

Joe,

I've got lots more recipes I haven't posted. It's been quite interesting to come up with new choices since I've become one of the people who were a "problem" on my crews. My crews are eating lots of lettuce wraps and spinach wraps for snacks now. I'm not usually the lunch caterer, but have been dealing with dietary issues for 20+ years.

Steroids of any kind or type just scare me, basically any medication scares me, knowing just how they are created and why via my research and my daughter who did some of that research. The focus is rarely on cause of illness and that's what I find so frustrating and I'm usually not so negative, I'm just really struggling recently.

Connie

Gabes-Apg · Post by **Gabes-Apg** » Mon May 17, 2010 6:47 pm

i am more than happy to listen to your vents! i love the way you express things, makes me laugh (i hope this helped to crack a smile)

TK is very unsettled about life in general, a recent death in the family further exaserbated this, he is going to back to New Zealand for a month or more. When he returns to Brisbane, within 2 months he will be moving 2hrs away to start working in the role for his recent promotion.

I am not sure what will happen re the relationship, my priority at the moment is looking after me, making sure i earn enough money to support myself without putting my health under stress.
taking on this new role is a really good step to help me achieve the goal of where i want to live.

Stanz · Post by **Stanz** » Mon May 17, 2010 7:20 pm

Ah, we all live quiet lives of desperation.

I have my life, my DH has his, we both have challenges w/our blended family obligations and then we have our little love-nest together. It is a never-ending quest to find balance, we are both so stressed in our occupations.

Can you live where you want to live with this new job classification? I'd practically kill to go back to NZ for a month or so, especially right now, since I am in such a bad state of mind.