Dealing with bad health

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Originally Posted By: satinsilver
I'd say proper diagnosis is the first step by a top tier doctor/hosptial like the Cleveland Clinic.


I went through some neurological issues about 15 years ago and basically defied a family friend (and also was our family doctor at the time) and went straight to the Cleveland Clinic. They were fantastic and I avoided 6 months off of work with a 48 hour visit to Cleveland.
Went back to work within a week without any further issues. Found that the family friend was no longer interested in being a family friend 1) after they shredded her diagnosis and 2) after I switched doctors.
Even though your situation sounds more complex than mine, they are top notch and if anyone can assist with your health issues, they can. Best of luck.
 
I hear very good things about the Cleveland Clinic down here in Weston, FL.

I have a friend that his wife kept getting misdiagnosed at other hospitals, Cleveland Clinic had no problem finding out the real problem.
 
I feel your pain although mine isn't as bad and comes and goes. Was out of work about 3 weeks ago due to excruciating pain on the left side right under the rib cage... Had a MRI and a scope from both directions and NADA.. no ulicers no polyps nothing. All though since then it's been sore but hasn't hurt. Truthfully I think something came out with the clean out process.

Have a constant pressure right under the rib cage in the middle and years ago had a horrible pain that everyone thought was a heart attack. Doctors are clueless on what's going on. After this last waste of money I've said screw it.. if it's fatal it's fatal . I'm starting to think with my age (33) that they think I'm in it for the pain pills.. I still have them but 1 or 2 hate taking those pills! All I can say is good luck.
 
Originally Posted By: pottymouth
I am sorry for your struggle.

People mean well, but they will never really understand what you go though. Don't expect them to. They will also grow weary of your struggles after a while and the support will diminish. Even those closest to you will tire of making sacrifices. Some will suspect you of exaggerating or suggest that you are not doing enough to fix the problem. Then there will be those who will give you unsolicited and unwanted advice based upon what happened to their niece's, roommate's, hairdresser's baby cousin who had the same thing as you. Don't take it personally. Most people simply have little endurance for the suffering of others and will either distance themselves from it or try to diminish it's significance in some way. It's their own defense mechanism.

What you must learn is to become as self-reliant as possible. Take complete charge of your healthcare. Ask as many questions as you need to. Challenge doctors that you don't agree with. Research all medications and medical procedures to your own satisfaction. I grew up in a culture of "doctor knows best" and have had to completely turn that attitude around.

Make sure to care for yourself in every way. Make time to do things you enjoy when you are able. Cultivate new interests. Try to connect with others who suffer with similar health issues if you can find them. They will have useful suggestions for you.

I know it's hard, but try to forget about the medical bills. they will be an unavoidable part of your life for the foreseeable future. They will be there whether you worry about them every second or simply do your best to make payments as best you can.

Hang in there. A big part of health and recovery is attitude. Keeping positive will help you. Focus on the positives and make the most of them.

Good luck to you.


These comments come from very wise person. Great advice, but, I know they will be hard to implement. Don't EVER give up!!
 
Originally Posted By: Cujet
I have an autoimmune disease. As 70% of immune cells are in the intestines, that's where I see the problems first. Nothing I eat changes how the disease acts, and when it acts up.

However, how healthy I behave/eat has a huge affect on my overall health. In other words, a perfect diet is not a solution for me, but it is absolutely necessary for well being and fast healing.

I agree with the above advice. Find a high end hospital, such as the above mentioned Cleveland Clinic and go there.

In my case, there is nothing doctors can do to eliminate the disease. We can only treat the symptoms. I will continue to deteriorate slowly. I've accepted that.


I was going to ask GMfan if autoimmune problems have been ruled out?
 
Originally Posted By: GMFan
I am a 26 year old who has always taken care of there body with healthy eating, exercise, weight lifting etc.

I have been battling health problems since February.............


I would agree with a complete workup at the Cleveland or Mayo Clinic. Then move forward from that point.

Based on your statement(s) above, I have to ask: what changed in or around February? More specifically from a cause/effect standpoint, what changed in your diet, life, etc., in the immediate months before February?
 
I've been back to the hospital every week since my last post. Anyway I will be going under anesthesia for surgery to repair a perianal fistula and get scoped and tested...the doctor suspects I may have chrons disease or perianal chrons. Without going into great detail when I get the urge to go I gotta go and it's painful. Anyway I wish the surgery were tomorrow so I can find out what it is and get the meds I need.

The hardest part is not knowing and worrying along with missing hours here and there from work to go to hospital and having to make those hours up when you don't feel like working at all. I've always been a hard worker but it's really tough to focus and concentrate when you're uncomfortable, in pain and worried at the same time. Anyway if anyone here is a nurse or doctor I owe you a handshake...the ones who have been caring for me are some of the most kindest people I've ever met....especially some of these nurses I swear they have a gift of cheering people up. Once all is said and done I want to write a letter thanking them for there kindness.
 
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Originally Posted By: joaks
Good suggestions so far.

GMFan- can you provide any more detail on your condition? Symptoms and what the doctor says is or is not the problem?

I'm not a doctor but I was trained as a dietitian before grad school. I might be able to give you suggestions of things to look into.


Hi Joaks, I have been reading a bit about the SCD (Simple Carbohydrate Diet). Any opinions?

My symptoms have been bathroom trips anywhere from 2-6 times a day, having to go over and over repeatedly within 10 minutes, sudden onset of stomach cramps (almost always in the morning...I am worst in the 10-15 minutes after I wake up), painful bowel movements, anorectal abscesses, fissures and fistula.

After this surgery and diagnosis if needed I plan on seeing a nutritionist. I am still under the impression that some foods may be affecting me, whether it is gluten intolerance or allergy to certain foods. When this all began my primary doctor thought I simply had lactose intolerance which to the best of my knowledge taking lactose pills did nothing to help me. The only thing that seems to help me is simply eating less. The less I eat the less pain I go through. This is why I've lost 25 pounds. I have had some bowel problems for years...I just figured it was a sensitive stomach. However around January I went downhill rapidly with all these ailments.

I will know a heck of a lot more next week after a sigmoidoscopy.
 
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So I had surgery at the beginning of this month and it was ambulatory surgery so they sent me home the same night. The sigmoidoscopy showed no abnormalities and they said my colon looked healthy. I took a week off from work and avoided taking pain meds as the pain wasn't nearly as bad as I figured it would be.

Last week on my way to work I started getting severe chills and shakes and had major stomach pains and had painful lymph nodes near my groin. I went to the hospital and they drew blood and my white blood cell count was very high indicating infection or inflammation. They put me under general anesthesia and performed another sigmoidoscopy and this time they saw inflammation and took biopsies. I spent 5 days in the hospital...2 of them I didn't eat or drink at all except the IV fluids and the doctors diagnosed me with Colitis. I had severe stomach issues and cramping in my guts like someone was stabbing me with a knife. This time I used all the percocet the nurses were giving me.

I am going to see a gastroenterologist in a few weeks (soonest appointment I could get) but in the mean time I'm eating a bland diet.

Hopefully I can get this under control.
 
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Hello GMFan

First let me say hand in there man. In the late 60's my mom was having the same issues that you have. Back then they truly had no clue to what it was. What that woman went thru was pure h*ll. Steroids & such took its toll on her. I believe it was the mid 80s or so that they put a name to it. Mom lived to be 72 passed 3 years ago. Take care.
 
GMfan-
Sorry to hear about how this is going so far.
So it is not clear if this is an infection or autoimmune? Just that bit of data would really help. Did anyone discuss or give you prednisone or remmicade?
Its hard to recommend altering your carbohydrates at time point, esp because doing this is often difficult? Have you trie drinking ensure or a similar product? These are usually easy to digest and can help you keep your strength up. I recommend the high protein version. There is another version of these drinks which is really easy to digest but suppossedly it tastes bad (its intended to go through a tube into your stomach rather than drinking).
Have the doctors ruled out celiac disease already?
(Typing on phone, sorry for messy senences)
 
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