Severe Ulcerative Pancolitis Diagnosis

My name is Diana and I was diagnosed February 21, 2010 with severe ulcerative pancolitis. I was sick for many months before a doctor could tell me what exactly was wrong with me. I was passed off from doctor to doctor with just a general diagnosis of colitis and that it would pass. By the time I saw my new family doctor, I was hooked up to a halter heart monitor with a heart rate of 111bpm, chronic headaches, weakness, constant fevers, night sweats, constant bloody stools etc etc etc. He sent me for 10 vials of blood work testing me for everything from celiac disease to lead poisoning. By the time I got to vial 6 I was violently ill at the lab. It took me a while to recover but when I did I just passed it off as if I just hadn't eaten enough...not that I wanted to eat being so sick to begin with. The next day I got a call at work from the doctor saying to drop everything I was doing and to get to the hospital right away because my hemoglobin came back a 4 out of 15 which meant I had 1/4 of the blood in my body I should have and I was a prime candidate for cardiac arrest. I was being sent immediately for 4 blood transfusions and an emergency colonoscopy. It was very scary. He explained it to me in very plain terms that I should've been dead. Had it been a traumatic injury such as a gun shot wound and I bled out that fast, I would've died at a 7 hemoglobin. The only reason I got away with it for so long is because I was bleeding out at a slower pace over a 2 month period of time and my body was trying to compensate for it as much as it could. I'm on my second round of prednisone due to a very nasty flare up that started about 3 weeks ago. I can't honestly say I've ever achieved remission because I've always had symptoms. I am currently taking 60mg of prednisone and weening off at 5mg a week to try and achieve remission. Along with the prednisone, I take 12 Asacol a day along with very high doses of B12, Vitamin D, Calcium and Ferrous Sulfate due to my profound anemia. I don't know what it feels like to have a good day these days. I am constantly cramping whether having a bowel movement or not and using Proctofoam 4 times daily, rectally due to extreme rectal inflammation from the flare up. I really wish it would get easier. I am scheduled for a colonoscopy August 23 and due to my current state, I am very concerned about the prep. My doctor put me on pain medication so that I can at least take the edge off when I do have to use the bathroom and the Proctofoam helps a little bit but it's only my second day using it so I have to give that more time I think. I did find a book that I read cover to cover called Breaking the Vicious Cycle and it's based on the Specific Carbohydrate Diet. I was amazed to read the testimonials from people with Crohn's, Autism, Celiac Disease, Ulcerative Colitis etc that are now medication free. I figure I will give it a shot. I really don't have anything else to lose at this point. It takes a lot of dedication and preparation but if it works even if not as a cure but to help ease my symptoms, it will be so worth it! I'm only 27 years old and finishing my Bachelor's Degree in Criminal Justice and have a dream of joining the FBI or Secret Service and just feel that if I don't achieve remission, I am never going to be able to do anything with my life. Slowly it's beginning to control everything. I couldn't even rent a boat over my vacation from work because I was so worried I would need a restroom in the middle of the lake in a row boat nonetheless. It's so frustrating. I am new to this site and am going to read through some of the posts on here to see if anyone else is going through what I am. I hope to hear from anyone who can give me some advice or insight or even words of encouragement. Thanks so much!

Diana

Post Edited By Moderator (Red_34) : 8/5/2010 4:59:52 AM (GMT-6)

Dear Diana,
Give yourself more time to heal. You are going through a tremendously difficult and painful flare. I have had uc for 22 years. I had mega toxic pan colitis in 1999. I was in the hospital for a month while a team of 8 doctors threw every drug they could think of into my system. It was another three weeks after I left the hospital before I was completely in remission. I had a few flares during the next 2 year period and then went into remission for many years. It may take a while before you find the right rx. Research as much as you can so that you feel confident about your doctor's choices. Be stubborn and don't let go of your dreams. Hope can be very healing.
I hope you feel better very soon.
Cynthia

SCD has worked very well for me. You have been so sick, if you are going to try it start out very, very slowly. Do the into for a few weeks then introduce foods one at a time. If you cant tolerate it, dont eat it. We have a thread here called SCD thread 2. Those of us doing the diet all talk about it. Its been very helpful. I will never go back to eating sugars and starches, cutting those out made a world of difference. This diet does not work for everyone so dont be discouraged if its not for you. There is something out there that will give you relief. Hang in there.

You and I had similar symptoms on the surface but my problems were not anywhere near the suffering you went through. Drenching night sweats, pulse that never dropped below 95 bpm even when waking up in the morning, constant bloody diarrhea, nausea, and fasting blood sugar that spiked close to the diabetic range when I would measure it each morning. My blood counts were so fouled up that I was referred to an oncologist to check for lymphoma. Severe arthritis and eye inflammation. Lost 5 pounds a week for over 40 pounds. I haven't seen others with all of these symptoms and thought I was unique.

The good news is that everything returned to normal immediately when my flare ended. Flagyl helped end my flare. You said that you were on Flagyl but I think it was very important to include probiotics in the protocol especially when antibiotics are taken. Probiotics must be taken every day to be effective and I have no problem with that as long as I can avoid another flare. Also I find that certain foods can set me off so I am very careful how I eat. My description how my flare ended is in this thread:

https://www.healingwell.com/community/default.aspx?f=38&m=1796748

I was diagnosed with minor UC in Feb 2010. Nov 2010 I went into a severe flare and have been in one ever since. I think my GI is not really very smart but aside from losing all my money trying to save my colon, I am still in a flare today, so severe I have had 14 blood transfusions. Is it actually possible to have your first flare after diagnosis and end up in surgery for bleeding? I take 40mg daily prednisone, Remacaid 10mg, imuron 100mg and am on dose 2 of the Ovamed helminth. I start the butyrate enemas tomorrow. I follow the SCD diet except I have added white rice after 4 months without remission. The gas comes before the flare increases or starts. It is from hydrogen sulfate in the intestinal tract. To slow that down, I have eliminated all sulfur rich foods and now my diet is so bland I feel like I am eating baby food. Meats tear up my gut and all I hope for is to stop the bleeding with a miracle. Anybody having a miracle? I would be happy to hear about it. Thanks for listening.

thank you for your comment-- but I already had various combinations of antibiotics, IV in the hospital and it did not promote remission. Diet is sort of working, at least to reduce gas without sulfur foods. I have added white rice into the diet because in Chinese medicine white rice is called the perfect food and the least starch effect of the grains. So SCD diet with white rice.