MY STORY; I need advice

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New Member

Date Joined May 2009
Total Posts : 4
   Posted 5/11/2009 12:49 PM (GMT -6)   
First off, let me say thank God there is a board like this with other people who understand.
I wasn't quite sure where to post this, but since I KNOW I had UC (diagnosed back in 2001, but in remission for a long time) I figured I would post it here.
Lately I haven't been feeling well and I'm trying to figure out what it is. I am going to a Rheumatologist next month. It's not the UC. I guess I should start out with some family history. The ailments are primarily on my mothers side. My great grandmother died of colon cancer but she lived a long life, I mean, she kind of died from old age as well. Her daughter, my grandmother, had diabetes and also went partially deaf around 30. She was later diagnosed with diverticulitis. I have excellent hearing but I have had some "falling episodes," which I do not know whether I should contribute to an inner ear problem or a fatigue issue, or heck, something else. But those were a while back for me, and not a recent problem.
My mother, after the birth of my brother in 1990, was diagnosed with mononeucleosis (sp?) or epstein barr virus or chronic fatigue syndrome (I'm not quite sure how they all go together but they do somehow). She couldn't breast feed and felt like crap and laid around for months. I felt really bad for her. My brother hasn't had any major health problems, other than a hernia he had surgically removed when he was like 5. I have a first cousin on mothers side that has Stills disease which is like Adult-Onset Juvenile Rheumatoid Arthritis or something crazy like that. Was not diagnosed until he around 40 years old! Also, mom went to a Rheumy last year afraid that she has Fibromyalgia or Rheumatoid Arthritis but her test showed up negative. I'm thinking its the EBV/CFS thingy though showing back up. She is still able to work but I know it is very taxing on her.
I was diagnosed with UC in 2001 after two years of being VERY VERY sick and my local doctors were total idiots that kept misdiagnosing me and wouldn't refer me to a specialist. I also believe that I have had iritis (started in 2005) that was triggered after changing to a certain color contact but at the time I couldn't afford the eye doctor so I'd just smoke **** and take out my contacts and it would get better but I had EXTREME photosensitivity. I just wear clear contacts now. I went to the eye Dr and had him test for iritis but he told me I didn't have it but it either didn't show up because I was normal at the time or he possibly didn't know what he was doing. I know that some eye doctors are not well versed in certain things, it depends on the type of eye Dr.
My UC and iritis issues are in remission  and have been for a while. There is one other thing that bothers me. I have an issue with my lower back. It hurts a lot and if I go to cough, sneeze, gag, etc, I feel what is either a disc shifting or a vertebrae shifting. It just moves for a split second and moves right back. I also think I have a slight case of scoliosis, but the back issue I suspect is Ankylosing Spondylitis. I guess I need advice on what you all think about this. Is it possible that HLA-B27 runs in my family? Can CFS be genetic? Could it be Rheumatoid Arthritis or Ankylosing Spondylitis? For a while I was scared I had MS but I have partially ruled it out because I don't have heat sensitivity, but rather cold sensitivity, it can never be warm enough for me, lol. I even go to a tanning bed sometimes.
I don't know if this helps any, but I am a B- blood type (I ended up with fathers blood type, but these illnesses are predominant of my moms side), low blood pressure, rapid pulse (could be because I smoke cigs, shame on me), very slender. Oh, btw, is it a bad idea for me to eat wheat/grainy bread? If I have to give that up I'll be sad. I don't know if I'm allergic to it or not, lol. Also, I am of Irish/Native American/Welsh descent.
THANKS A MILLION TRILLION THANKS for any replies. smilewinkgrin
1. No discussion of any illegal activity or threats of violence. (ie. illicit drug use, including medical marijuana use, threats of suicide or self-injury, or threatened or intended physical harm).  Discussions of suicide or self-harm that are deemed negative and therefore potentially injurious to others are also not permitted.

Post Edited By Moderator (Red_34) : 5/11/2009 12:20:53 PM (GMT-6)

Veteran Member

Date Joined Dec 2008
Total Posts : 3231
   Posted 5/11/2009 2:22 PM (GMT -6)   
When I need to see a specialist, I find the specialist myself and not depend on my PCP to do so. Usually insurance companies (at least in the US) will have a search feature on their Web site that allows you to search for specialists in your area that take your type of insurance. Certain types of insurance allow you to go to certain specialists yourself without having a referral. Others require a referral. If you need a referral from your PCP, give your PCP the information that he/she needs to send the referral and insist that he/she does so. PCPs will be more inclined to give referrals when you have already found the specialist you would like to see.

I got test for allergies when I first found out that I had colitis. It wasn't really necessary that I do so, but I was able to rule out allergies as a cause for my colitis by seeing a specialist. I got the referral from my PCP only because I did the work and found the specialist myself.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 5/11/2009 2:26 PM (GMT -6)   
Sounds like autoimmune diseases run in your family. It's not uncommon for folks with IBD to develop rheumetoid arthritis or other autoimmune diseases. Joint pain is common, too, especially pain and inflammation in the lower spine because of its proximity to the colon. I had a bout of inflammation and pain in the lower back that was relieved by a few visits to a chiropractor.

Have you had your thyroid and hormone levels checked? Either could explain your tendency to be cold and your low weight.

In my experience, limiting or eliminating gluten (including wheat) from the diet was a big help in attaining and staying in remission. It would certainly be worth a trial.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.

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