Hey guys
Well i just had a GI appointment last week and as usual it was pointless. He wants me to get tested for tubercolosis(sorry if i mispelt it) and he gave me my first dose of Cortisone. He still says with time my colitis will turn into crohns or ulcerative colitis. But seeing how my entire colon is infected and irritated it is most likely to turn into ulcerative colitis.
I am getting really tired of seeing his sorry ass face. He is this young intern on a power trip. The questions he asked me are very unprofessional. He says I have this for life and there is nothing i can do about it. He says take cortisone so i can remember and feel how good life was. He says all my symptoms are not normal. Well dah im sick you moron.
I told him about the frequent urination and at times its about every 30 minutes. And at times its a lot and at times its very little. Im also starting to get joint pain in my legs and fingers. My skin color has also changed to a lighter shade of brown. Around my stomach area my skin color has changed as well and on my face as well. It is honestly a lighter shade of brown. Even my friends have noticed this but yet my doctor says he sees nothing and its probably because i got LESS sun. How is that possible. Also i told my Gi that on the left side i feel something big so he lies me down and starts feeling my intestins. He goes oh i feel nothing. Im like look like there on the left side its always on the same spot that it feels wierd like its swollen. He goes normally people with colitis it hurts on the right side. Im like look i said its on the left he said its probably nothing but I know your intestin is sick. Then he gave me my cortisone. I will not take it as I have read your posts on the drugs and i am going to decide to go the natural root 100% or get fecal transfusion.
I have been following the works of dr.borody and how he uses fecal transfusion in people with ulcerative colitis. He has seen great results. I just wanted to know where i can maybe get that treatment. Im willing to pay for it out of my own pockets as well. Also i wanted to know if anyone in canada has gotten that treatment since i am in canada.
Currently i am taking 2 tablets of bee propolis and it has been helping. Also taking chinese herbs which has been helping.
Hope all of you are doing good.
Take care.
Tests done so far: Parasites and occult blood - negative; Barium liquid swallow - normal; CT scan - normal; Fecal fat test 72 hours - normal: Colonoscopy with biopsy - chronic colitis; Got blood test to test if I have Crohns or UC and both came back negative.
Tests done so far: Parasites and occult blood - negative; Barium liquid swallow - normal; CT scan - normal; Fecal fat test 72 hours - normal: Colonoscopy with biopsy - chronic colitis; Got blood test to test if I have Crohns or UC and both came back negative.
Gvien Flagyl for 10 days before any test and worked then every came.
Currently not on any medication - trying chinese herbs for 3 months now
Currently 95 pounds. I was 120 pounds a year and a half ago.
Diagnosed with Chronic Colitis in March 2007 Gi says might branch out to crohns or uc
Sounds like youre GI is a complete incompetent moron. My advice would be to get a second opinion or better yet a different GI.
Per Ardua ad Astra - "Through adversity, to the stars"
Per Ardua ad Astra - "Through adversity, to the stars"
To me, it really sounds like you need to see a different GI. I'm concerned that he told you UC always hurts on the right side... and the fact that he seems to completely disregard your comments. It is usually the left side that can be painful for UC patients (someone please correct me if I am wrong, but I have always experienced pain on the lower left side of my abdomen and have read that is common). I think you might benefit from a second opinion.
Current Medications:
Current Medications:
- Asacol (4 pills, 2x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)
Expecting226,
I have been in touch with a few people who have tried the Borody protocol and all have seemed to benefit. But there are virtually no GI's in North America who do this, and one needs access to a "donor" such asa a family member, who is screened. I am starting to look into this option, too.
I sent an email to the borody clinic and it bounced. I figure that in North America one may need to find a non-GI, alternative MD type to supervise it (as well as sign off for the various stool tests for donors, issue the needed antibiotics ytaken in conjunction, etc..)
Pancolitis dx'd 1986, full med-free remission 88-97
I have been in touch with a few people who have tried the Borody protocol and all have seemed to benefit. But there are virtually no GI's in North America who do this, and one needs access to a "donor" such asa a family member, who is screened. I am starting to look into this option, too.
I sent an email to the borody clinic and it bounced. I figure that in North America one may need to find a non-GI, alternative MD type to supervise it (as well as sign off for the various stool tests for donors, issue the needed antibiotics ytaken in conjunction, etc..)
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
dee007, I can sympathize with your situation entirely, and I agree, fecal infusions do appear to be promising.
You will likely take interest to this Google group http://groups.google.com/group/hpit?hl=en&lnk=srg (Human Probiotic Infusion Therapy), in which many members have performed HPIT independently.
Dr. Borody's infusion protocol can be obtained by contacting the Centre for Digestive Disorders in Australia.
Good luck.
You will likely take interest to this Google group http://groups.google.com/group/hpit?hl=en&lnk=srg (Human Probiotic Infusion Therapy), in which many members have performed HPIT independently.
Dr. Borody's infusion protocol can be obtained by contacting the Centre for Digestive Disorders in Australia.
Good luck.
Dee,
Before you start considering new treatments, I think you need a new diagnosis and a better GI. I agree with the previous poster who said the same thing. It's true that sometimes our doctors can't figure out how to get us into remission but at least they should be able to explain everything clearly, be sympathetic and listen, and also feel the correct side of your belly when you notice something strange.
Here's what I would do -- call the best hospital in your area and ask who is the head of gastroenterology. OR, look on their website to see who in their department specializes in colitis. You need a really good specialist who isn't going to be some young guy on a power trip. You deserve better information and help! It's a pain to look for a doctor when you're not feeling well, but hopefully you can find someone else easily. Good luck and let us know how it goes.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.
Before you start considering new treatments, I think you need a new diagnosis and a better GI. I agree with the previous poster who said the same thing. It's true that sometimes our doctors can't figure out how to get us into remission but at least they should be able to explain everything clearly, be sympathetic and listen, and also feel the correct side of your belly when you notice something strange.
Here's what I would do -- call the best hospital in your area and ask who is the head of gastroenterology. OR, look on their website to see who in their department specializes in colitis. You need a really good specialist who isn't going to be some young guy on a power trip. You deserve better information and help! It's a pain to look for a doctor when you're not feeling well, but hopefully you can find someone else easily. Good luck and let us know how it goes.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.
I see you're in Canada, and I've been told it's more difficult to change doctors there. If you're seeing a specialist in the clinic at a teaching hospital, consider making a written report to his superior of your concerns. Be very objective and rational about it, and tell him what it is that you need from the doctor that you aren't getting.
But if it's an option, a change of GI's is indicated in my opinion. Most of us have fired at least one GI in our time.
But if it's an option, a change of GI's is indicated in my opinion. Most of us have fired at least one GI in our time.
Judy
Left-sided UC diagnosed 2001. Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years!
Now in remission for almost two years. Remicade has been my wonder drug.
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."
Judilyn said...
I see you're in Canada, and I've been told it's more difficult to change doctors there. If you're seeing a specialist in the clinic at a teaching hospital, consider making a written report to his superior of your concerns. Be very objective and rational about it, and tell him what it is that you need from the doctor that you aren't getting.
But if it's an option, a change of GI's is indicated in my opinion. Most of us have fired at least one GI in our time.
I see you're in Canada, and I've been told it's more difficult to change doctors there. If you're seeing a specialist in the clinic at a teaching hospital, consider making a written report to his superior of your concerns. Be very objective and rational about it, and tell him what it is that you need from the doctor that you aren't getting.
But if it's an option, a change of GI's is indicated in my opinion. Most of us have fired at least one GI in our time.
It depends what part of the country you are in. Each province has its own health insurance program and they all allow you to change doctors if you can find one. Many towns and small cities have a shortage of doctors and it can be hard to find a doctor accepting new patients. In larger cities or if you are wiling to travel it is much easier. I have changed GI’s once and family doctors twice here in
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
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