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View Full Version : Cronkhite-Canada Syndrome - a rare disease (Anyone?)



gardenia
03-12-2014, 11:17 AM
After recovering from my surgery, I started losing my taste of food and minor indigestions episodes. My nails started lifting from its bed, my hands were getting dark spots to eventually brown.

Went to a GI local doctor in a small border town who then referred me to UCSD (Univ of Calif - San Diego school). After 3 endoscopy/colonoscopies in 6 months, Dr Savides agreed with Dr Bridwell (possibility of CCS).

Dr Bridwell (surgeon for my scoliosis in ST Louis) Nov 2013 on my anniv visit, mentioned having had 3 patients that sprouted CCS.

CCS is a rare disease like all those GI problems we all face which the medical profession/pharmaceuticals do not have a fix because there is no 'cause' known. Imagine that most of the inflamatory problems are still being fixed by Prednisone (the cure all like Aspirin). CCS is not seriously reported but those found in 1955 about 500 cases.

Fortunately, my case is found early. All the changes, including not eating for a month because I was in bed and going to the toilet - losing muscle toning on my back, I lost about 20+ pounds and I was totally un-nourished.

The doctor in San Diego is referring me to another colleague specializing in IBS who has another case(s) of CCS. I found another patient in a blog that has CCS for the past years seeing the same doctor but amazingly enought had a spinal surgery 2 years ago!!!!

Dr Bridwell thinks that the trauma of the back surgery might have brought on the CCS which consist of over population of eosoniphils and so much inflamation of the digestive system that no nutrients could be absorved. This other lady had been on TPN for a long time and now is getting over it with no indication if it will come back or not.

Left untreated, people decline, guts become cancerous and with a great back we float to the other dimension.

I am doing much better but now the future is an unknowned. After being totally healthy except for pain in back, the digestive system is really in control. One week you feel great and another you are so weak that a step, moving of the eyes, speaking becomes such an effort - debilitating and it makes one realize how energy can be gone in a second. Thus life.

I am on my second period of taking Prednisone for 2 months. The first stage cured some but symptoms returned and the endoscopy/colonoscopy immediately done showed increased or same amount of inflamation.

Just wanted to find if anyone had similar un-related coincidence.

JenniferG
03-12-2014, 11:26 PM
I'm so sorry to hear this Gardenia. What a bitter pill to swallow. I hope you can find out a lot more about this disease and that eventually, it clears up. I hope your post helps others who might be having gastro-intestinal problems after surgery.

susancook
03-13-2014, 01:10 AM
Gardenia, like all of the rest of your challenges, you will conquer this one, adapt, and make the concessions that are needed to live as full a life as possible. You seem to have such can-do attitude, that now that you know what the probe is, you will fight it and master it. You have never been one to give up, from what little I know about you.

I wish you the best as you deal with the challenges that face you. You are in my thoughts and prayers.
Susan

babyboomer16
03-13-2014, 11:57 AM
Gardenia,
I am so sorry that this happened. I googled Cronkhite - Canada Syndrome and I'v never heard of it. But read what it said. I think these huge surgeries can definitely leave our bodies in a world of hurt, or shock, like you said. I know fybromialgia, adrenal fatigue and probably many other things can be brought on by surgeries like these. I developed fibromyalgia back in 1996 after a vascular bone transplant in my arm. I had had eight surgeries on it previously. I also developed adrenal Fatigue after my second back surgery. My Dr. Told me it was from the back surgery. It is truly something that we don't think about and no one tells us these things can happen. I just pray you can get behind this , and it sound like you feel a little better now . I am going to an endocrinologist and have some test done, as I feel really crappy for the past couple months. I think it's the adrenal glands again. I only brought up my conditions to let you know some of the other things caused by these big surgeries. Please know your in my prayers. I just wish there were more they could do for you. Stay in touch with the forum. I really want to know how you're doing.
Best wishes to you, Linda

jrnyc
03-13-2014, 09:15 PM
hi Gardenia
so very sorry to hear about this diagnosis, but so glad doctors
figured out what it is and found it early....
i will keep you in my thoughts and prayers that you feel
better soon.

hugs from jess and Sparky

gardenia
03-14-2014, 10:13 AM
Actually, I am pretty fine about the DX because at least it tells me what I got. I know medicine will deal with the rest. This is an example of how we have to take charge of our own bodies and not let other people tell you differently. At one point the family thought that it had to do with stress or depression - I must have been so bored in my recovery that I keep thinking-looking for every little change in the body. I was able to go to the local doctors that graduated last in their class and got a position for residency at a border town filled with immigrants with little insurance coverage. Oh well. C'est la vie.

The back surgery is a major thing for us, having our back split open and our main body support be moved around after we had lived with it for decades.

Our digestive system is like our bodie's sewer system so no wonder many of the diseases do not have an explanation. Imagine just for a minute all the stuff we really give to our organs to process but I am not here to discuss food reform.

The idea is for us to bring out the common denominators related to the big surgery.

Thank you for all the best wishes and encouragement, I think that living without Vicoden is great and this CCS is just a little price to pay to take better care of the body while healing. I am good.

jrnyc
03-15-2014, 12:23 AM
i understand, Gardenia...
you have to know WHAT you are fighting before you can know
HOW to fight it...
it can be a huge relief to get a diagnosis, to put a label on what
is wrong...then you can make a game plan of what to do..
i found that out in Lyme Disease...for a year and a half doctors,
and others, liked to tell me i was doing too much, going to work
and to school at nite, was tired, was a hypochondriac, just broke
up with my boyfriend and was sad about it, etc etc etc, because
they couldn't figure out what i was sick with...
when i finally got the diagnosis, it was a relief to have a name to
put on all the symptoms...and then a plan of attack.

hope you feel better every day.
jess...and Sparky

gardenia
03-15-2014, 12:45 PM
So true; know thy enemy, know everything

That is how I feel exactly ... thanks for the words. We can fight if we know the enemy and able to gather the weapons. When we don't know we do not have control of the situation and rely on the doctors to call the shots when they have 10-20 patients a day.


Take control of one's life, run your own destiny, own your actions.

I love the support I get here and hope in a way, my rambling thoughts can motivate someone else not speaking up to raise from the place they are stuck.

No one should be so miserable that they can't do a bit of fighting (leave anger, guilt, blame, regrets etc. aside; look to the future as a challange and do the best you can however there are days of depressions, weakness, low energy etc and in those days let yourself wallow in pity because once you hit bottom or do too many of those days you should say: Enough! and come back rested and ready to fight again.)

Thanks all

Doodles
03-20-2014, 02:36 PM
Gardenia--
I'm so sorry you have another thing to deal with. However, as others have said you now know what it IS you are dealing with. I too have never heard of this. Keeping you in thoughts and prayers and hoping for better days for you. Janet

mabeckoff
03-20-2014, 08:47 PM
Keeping you in my prayers

rohrer01
03-21-2014, 12:49 PM
I'm fighting a similar battle. Not with the same disease, but with finding out what is wrong with me. They told me I was a hypochondriac, but surprisingly had a lot of pathology! It's a bunch of bologna! I went through the necessary "therapy" for my hypochondriasis and guess what? Nothing changed. NOW they know I have muscle diseases. They have a name for one, but not the other, yet. They still think it's Myotonic Muscular Dystrophy and I will have the DNA tests done when my insurance approves it. But it took time for them to "see" the weight loss and "see" the muscle atrophy and "see" my loss of neuro function and coordination and partial paralysis. You can't somaticize all of that! Pain, maybe. Scoliosis, muscle and nerve degeneration, dystonia? Absolutely not. I know I'm not a hypochondriac. I've been called that since I was a kid with back pain before they found my scoliosis. Live a life like that and you start to wonder if you really ARE crazy? WOW! I am NOT crazy. I can't somaticize my heart condition, either, even though they tried to accuse me of it by saying I was having "panic attacks". What the heck! It took me having a cardiac episode in front of my doctor for him to realize that I wasn't panicking! THEN I got a referral to a cardiologist who easily diagnosed my heart condition. I've lived my whole life fighting to be believed. I'm in my 40's and am finally getting some answers, and I'm NOT a hypochondriac!

I'm so glad, Gardenia, that you didn't listen to those that accused you of having too much time to think about every little change.

I'm so glad, Jess, that you didn't stop listening to your body and just succumb to the idiotic beliefs that you were doing to much, under too much stress, etc.

WE KNOW WHAT WE FEEL!!! That doesn't make us crazy!

Doodles
03-21-2014, 03:07 PM
Rohrer--
How awful to go through this over and over and not be believed! Bad enough to deal with real pain and then to be scoffed at. I hope someone can find you some relief. Janet

rohrer01
03-21-2014, 09:59 PM
Rohrer--
How awful to go through this over and over and not be believed! Bad enough to deal with real pain and then to be scoffed at. I hope someone can find you some relief. Janet

Like Gardenia, I am getting all the help I need, finally! My current doctors DO believe me. I'm on a ton of meds to control the muscle spasms/pain. The scoliosis is painful, too. I've been fighting that battle almost my whole life. It took a serious episode of pain for me to be seen by a chiro, who at least took an x-ray. After that diagnosis, I wasn't called a hypochondriac anymore. But it stays with you and is hurtful. Even if you're an adult and not believed, it's frustrating and hurtful. Being forced into therapy was a waste of time and money. But I had doctors working with me to help me the whole time. I only had one doctor (anesthesiologist) be really mean to me after the hypochondriasis "diagnosis". He's long gone. I think they gave him the option to leave or be relieved. When I mentioned him to ANY of my other docs, they just made a face and bit their tongues. A couple of them made some professional but disdainful comments. The anesthesiologist was buddies with the Ph.D. psychologist who diagnosed me. I've never liked that guy, either. He's rude and condescending.

gardenia
04-14-2015, 08:46 PM
It is always about what others think it is something you are not doing thus you are having pains. I am happy that this doctor is believing that I do hurst and the reason i.e. all the instrumentation and wants to remove. However the initial doctor is saying: don't let him take off the hardware but offers no other help.

I mentioned that both top doctors should have a phone consult but neither would consider this. They are ignoring that I am the patient and the one suffering. They are both big names and big reputation.

I am finally understanding that this is not about me.... but readers, it is about you and me.

Take control of your pain and life. Don't back down as your pain is real. I hope everyone continue to seek help (easy said than done).

Lizardacres
04-15-2015, 09:40 AM
More than anything, I hope you can find a physician who can offer you support, listen to you and work WITH you. I have had a diagnosis of dystonia for almost 20 years and have seen many, many doctors. I think when you have a new diagnosis you go through a period where you visit a lot of doctors, looking for answers and help. I think this is healthy as it is educational. But it can also be exhausting.

I was so fortunate to find a primary care doctor who mostly listened and encouraged me to come back anytime, even if just to talk. She was willing to prescribe any drugs I wanted to try and never made me feel like a hypochondriac. I haven't seen a neurologist in many years and doubt I will ever go back. They are necessary for diagnosis but not so good for long term care, at least in my experience.

The gut certainly expresses our stressors. I wonder if reading any of Dr Andrew Weil's books could shed some light on how to assist your body in recovering. He is an MD who is all about wellness based in Tucson.

gardenia
04-20-2015, 12:56 AM
Btw, my GI specialist backed off on the Cronkite Canada Syndrone.

My GI is well or let's say under control.

I am certain that it was caused by the trauma of the spinal surgery and the prolonged sedation I was under due to precautions taken after the dural leak. I was in the hospital 11 days too long and psychologically affected. I had a shoulder replacement and was to spend one night but as soon as I woke up the next morning, I was freaking out demanding to my daughters to get me released when I was not really ready.

Finding a physician that has the time to listen is something of the past. Most doctors have to pay back their loans, their malpractice insurance, etc specially in places of high demand and competition.

And, don't move because establishing a new relationships take time. You need to win the receptionist i.e. the one answering the phone and the nurse before you can get to the doctor.

I am sure that not ever needing medical care is the best.