My GI doctor called today with results from my capsule endoscopy and the serum antigen tests, apparently they came back positive for Ulcerative Colitis.
I feel shocked. I knew that something was very wrong, had been for a long time. The doctor suspected crohns but still it's hard for me to believe.
Thankfully they were able to work me in for a follow up appt on Friday to discuss treatment options and further testing.
What should I expect with this treatment?
Thank you friends for sharing your thoughts.
Posted by tickled1 (Member # 14257) on :
I'm sorry to hear this sammy. Are you on any special diet? I'm about to start the GAPS diet which boasts big claims to healing all gut ailments. Are you familiar with it?
Posted by Lymetoo (Member # 743) on :
Oh Sammy.. how awful!!! I am also beginning a special diet .. GAPS in basis.
Do a little research on it and in particular "bone broth." Very healing!!
Again, I hope they have some options for you. .. and I will continue to keep you in my prayers, as always.
Posted by Talktel (Member # 7980) on :
I'm in a similar boat Sammy.
I really feel for you!
Posted by Razzle (Member # 30398) on :
Do NOT let them give you Remicade, 6MP (Mercaptopurine or Purinethol), Azathioprine or Methotrexate. These medications suppress the immune system and may potentially be very dangerous for those with Lyme if one is not under the care of a Lyme-Literate Gastroenterologist.
Clinical studies have shown Probiotics (VSL #3 specifically) to be as effective as the 5-ASA (Mesalamine) based medications for Ulcerative Colitis.
Mesalamine based medications are not dangerously immune-suppressing, and in fact may have some antibiotic activity because they are derived from Sulfasalazine, which is a sulfa-based antibiotic. Mesalamine (Pentasa, Asacol, etc.) is not sulfa-based and is safe for those with sulfa drug allergy.
Also, Lyme/Coinfections are known to cause inflammation in the colon that may resemble Ulcerative Colitis.
And I know of at least one case of Ulcerative Colitis that went into remission after a strong dose of antibiotics (given via IM injection).
I encourage you to consult with a Lyme-Literate Gastroenterologist about this for a second opinion...
Take care,
Posted by gmb (Member # 23562) on :
I agree with Raz, VSL#3, but get the DS prescription grade if your Rx insurance covers it.
Also add Floristor - Saccharomyces Boulardii
Both of these have helped me immensely and hopely you will see improvements in a month.
good luck
gmb
Posted by Dekrator48 (Member # 18239) on :
sammy,
I'm so sorry to hear this. You have been through so much. I am praying for you.
Here are some articles by Dr Mercola that contain info about ulcerative colitis.
A disclaimer: He does sell supplements.
I like the way he thinks though. He takes a more natural approach to medicine, instead of pharmaceuticals.
I'm sure you have been taking probiotics for a long time, but as Razzle and gmb said, maybe that specific brand, VSL #3, would help.
Here is one study about that, as Razzle pointed out:
I had a horrible gut with crohn's symptoms but didn't stick around the GI long enough for any kind of diagnosis, so I don't have a name for what I had.
I would try to heal your gut naturally .... it took me two or three YEARS, but it can be done. Body Ecology Diet (book) is excellent.
VSL#3 was a must for me. I also ate tons and tons of fermented foods. I made my own kefir, kombucha, and sauerkraut. You have to build up the bacteria. Ferments have even more bacteria than probiotics.
I also did the bone broth. I could not eat anything that was not heavily cooked, so most of my veggies were added to bone broth and cooked heavily. Now I can eat salads all day long. It takes time and patience, but you can heal it.
Iodine helped. Thorne Biogest helped (essential). Parasite treatment helped. Triphala.
Posted by Spindleshanks (Member # 32556) on :
Sorry Sammy. Have you looked into slippery elm. My acupuncturist recommended it for my colon. It coats it so it can heal. I have not tried it yet.
Hope you find some releif.
Posted by Lymetoo (Member # 743) on :
Six.. I am also looking at the Body Ecology Diet. Doing a combo of both.
I learned how to make kombucha today!!
Sammy.. do look into slippery elm. Buy the organic tea .. not pills.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Lymetoo:
I learned how to make kombucha today!!
Great! Are you making a SCOBY?
Posted by Talktel (Member # 7980) on :
Where do you get slippery elm? What else if good for the colon?
Sammy, someone had recommended a product called intestazyme- good for healing ulcerative colitis.
You have to get it through a doc, they won't even talk to the patient.
I couldn't find a doc to order it for me, but maybe look into it. Its an FDA approved product.
BTW, what is kombucha?
How does one find out about how to make fermented sauerkraut, kombuche and kefir?
Posted by Carol in PA (Member # 5338) on :
What are you taking already that will reduce inflammation?
Look into systemic enzymes, fish oil, green-lipped mussel (Perna canaliculus, sea mussel).