Crohns and Colitis Exchange
This is a place for members with Crohn's Disease or Ulcerative Colitis to get ... more
See All
Preferences
My Communities
My Discussions
My Email Digests
In late 2008, I begged my GI doctor to allow me to take the B12 via nasal spray as I lead a rather active life. Within a matter of months, I was feeling like garbage. I wanted to die I felt so bad. I went to the doctor and told him that I thought I was getting a cold. While I was there, he ran some tests and found that my hemoglobin was a 7. He admitted me to the hospital right away and I was given 4 pints of blood! It was determined at that time that I was not absorbing the nasal spray B12 and I was put back on shots.
In 2009, my GI doctor left the area and I was forced to see what I believe is a far less superior GI doctor but left with few GI doctors in the area, I stayed with him. Afterall, I was in remission. The new GI doctor continued my shots... until...
My company recently changed insurance companies and I began to notice that the shots I was getting from my GI doctor were not being paid out by my insurance because he was coding them as outpatient shots and not office shots. So, I'm stuck with paying for an $82 shot. I tried getting them to change the coding but they flat out refused and my insurance company refuses to pay despite my medical need to have them all because of how the doctor was coding them. So, I was stuck in the middle. I am currently appealing to my insurance company and the doctors office.
Looking for a way around the mess with my insurance, I asked the doctor to please have the nurse teach me how to give the shot to myself. He refused! Instead, he tried to put me on the nasal spray. Yep, the one that my body wont absorb. Feeling desperate, I agreed to try the nasal spray again... until I got to my pharmacy when they told me that after insurance, the spray would cost me $140. So, I tried to call the GI doctor again to tell him I needed another route to get my B12. He NEVER called me back and it's been a week!
Meanwhile, I set up an appointment with my general doctor who tends to be a far better listener. I wanted to meet with him so that I can arrange to have the shot at his office and see if they will bill the shot correctly so I'm not paying out the nose for a shot I need. He understood my situation and agreed to give me the shot at his office. To start, he gave me a shot of B12 (three weeks after my last shot) and did some labs.
This morning, I get a call from the nurse from my general doctor's office. She advises me that my B12 level was high. She asked me again to explain why I needed the shot at all. I went over my history yet again and you could just hear the doubt in her voice like I was making it all up. I kept referring her to my medical records which documents my history with anemia, etc. She said that she recommended that I talk to my GI doctor about cutting back the shots and that I should continue to see him for the shots. Which just takes me back to the begining of my problem.
In the back of my mind, I thought about maybe stopping the B12 treatments altogether and then letting myself get sick again. So when I end up in the hospital I can say "Now that I have your attention..." but I hated how I felt when I had to get the 4 pints of blood.
What do I do? Anyone run into this issue? Anyone try the B12 patch? Does it work?View Thread
scaredtodeath posted: Hi. My mom died from colon cancer at age 42. She had ulcerative colitis first. I was diagnosed last week with UC, and gatritis. *8 days in hospital. with 2 antibiotics running IV all 8 days. Went in hospital with 8-12 BM's daily. Diarrhea, green, or pasty peach color, small amount each time. On day 7, BM's slowed, started to thicken. Sent me home on day 8 with no meds at all, not even oral antibiotics. Day 5 out of hospital, same symptoms start again. Yesterday Dr. put me on Flagyl again for 14 days, then off to a gastroenterologist My question is, has anyone of you had this happen. I eat, and within a hour or two, feel pressure.dull ache in my hips and butt. Go have a BM and it is nothing like a BM. Little bit of light green,light orange funny looking stuff. When I wiped today it was nothing but mucus and clear looking stuff. Please, have any of you had anything like this? .All help is truly appreciated. I am afraid of all this. Thank all of you for anything you can offerView Thread
I just stumbled upon this forum today. I don't know if anyone on here has heard about using Fecal Transplant for Ulcerative Colitis but it worked for me. I did my last fecal transplant in July 2011 and have been off all maintenance medications and restrictive diets since December 2011 and actually have better bowel movements and health now than I did before I was diagnosed with Ulcerative Colitis in 1999 following my first flare.
In March 2011 after trying almost every possible therapy I came within days of my scheduled surgery date when I found out about this treatment from an article published by Dr. Thomas Borody in the journal of Gastroenterology "Treatment of Ulcerative Colitis with Fecal Bacteriotherapy." Six patients with treatment resistant cases similar to mine were now free of any signs of the illness and had been off maintenance medications completely anywhere from one year to 13 years.
After contacting a few doctors and talking to one or two I realized that it was not a viable option for me. To make a long story short I ended up doing self-administered fecal transplants using doctor's protocols and other patient experiences to guide me. I started them daily in June 2011, had a slight flare where I went back on Prednisone, then went back on Apriso, added the drugs Bupropion and Silenor (a low dose of the tri-cyclic anti-depressant Doxepin.) Within a day of starting the new combination my symptoms went away leaving me with solid stool for the first time in years. I successfully tapered from 30 mg to 0 of Prednisone within the next 10 days and then by December stopped taking Apriso as the last Colitis drug.
I go into a little more detail on my website: http://www.FecalTransplant.org.
Bottom-line this treatment is affective, safe, and comparatively inexpensive especially if you do it yourself. However it will take someone who is really motivated to be done with this illness once and for all and willing to get over any squeamishness they have about poop. Compared to fecal transplants used to treat Clostridium Difficile infection which can be done in just a few days it could likely take more fecal transplants anywhere from 1 to 3 months, protein shakes to boost nutrition, and continuing to take other drugs to calm the bowels and inflammation for a few weeks or months after you have completed them before you can definitively be done with this illness. However once it is gone, it's gone and you can go back to living your live.View Thread
Now I'm miserable again- actively bleeding from small bowel, and in tons of pain..
Cant eat hardly ANYTHING without it making me sick- Has anyone had any of these problems, do they get better??
Having testing done this friday to see if perhaps I am allergic to the suture materials they used to connect the small bowel to rectum... ugh!View Thread
Havent been here for a while, hope everyone is well. I will be starting the remicade infusions this week, and wondered if anyone here was getting them?
All I found for remicade was written 2 years ago. Am hoping someone can help with some questions. Hope too hear soon!
Thanks, LindaView Thread
Has anyone had this problem? I would like to be reassured that this problem will go away, I know everyone is different.View Thread
Has anyone had this problem? I would like to be reassured that this problem will go away, I know everyone is different.View Thread
i am having a bad flare up of UC, chronic active proctitus apparently. been put on prednisone a six week course, today is my 7th day and i have never felt so bad.
i feel shaky, exhausted, typing this is an effort! if i can just curl up in a corner,not move or speak ill be happy.
is there any way of changing how im feeling?View Thread
View Thread
Went out last night and had 1 1/2 screwdivers. Suddenly I had the most extreme stomach pain. Felt like a hot knife in my gut. I could barely move and the more I stressed over it the worse it got. Took 4 tums an a zantac. It took a good 2 hours for the pain to subside. Still slightly burns today.
What is going on? Is it the new med? I do also take 150mg of morphine per day for cronic back pain.View Thread
I have had nothing but horrible experiencing with doctors and GI specialists. One tells me to take this and eat this and the other tells me this is wrong take this and eat this, then the other gives me hell for doing what that one says and then I am looked at like I am making it all up. I have crohns, IBS and GERD. I suffer constantly with one or the other. This makes it difficult to eat and treat. I am sick of being tossed around and made to feel like I am "pretending, over exaggerating, stupid, small and not cooperating". Where is the compassion, and why don't they listen? I know my body better than anyone! I have lost faith and trust in all of them. I am sick of intrusive almost abusive examinations. The last words of the NEW female GI I just saw "well I don't know if I will take your case and if we can't find a solution you will have to suck it up and live with it". Also....she made the error of saying "oh you don't have cronhs"...argued with me...causing me great distress...and then agreed she read the letter wrong. No apology, no warmth...just one big cold power trip. I am feeling pretty depressed over this treatment and hopelessness...bad enough I have these diagnosis.View Thread
This year, it came back again - differently, but worse. Every single night without fail, I felt so extremely bloated that I appear pregnant, with the obvious gas. It didn't matter what I ate - everything triggered it, it seemed, and it was always almost immediately after dinner that I began to feel this way. I tried to map out how I felt according to the food eaten, but it was always the same. I became discouraged and unhappy, and I saw a general practitioner (my GI is STILL booked.. until Jan 10) who told me I could have a variety of things, including IBS. Now, I already have a hiatal hernia and GERD on top of Crohn's so I really don't think I need another intestinal illness!
*** Now just a few days ago, I woke up at 6am feeling so strange, and I ended up vomiting. About six hours and 6 or 7 bouts later, I finally stopped vomiting - only to feel awfully weak and sickly with searing, stabbing stomach pain. Then started the diarrhea, which I've had since. The second day was worst and included stomach cramping, bloating, and gas (which I was afraid to pass unless on the toilet for obvious reasons). Took Imodium and barely ate that day and woke up the next feeling much better, only going to the bathroom once (which, while not at ALL good, was an improvement from the day before). I had my appetite back and was happy to seem to be improving. However, last night I woke up with the same extreme bloating and gas with a ridiculous amount of audible gurgling (which I could feel with my hand on my stomach). Was in the bathroom feeling nauseous as well for basically an hour. What changed? Why did this come back?
My grandma recently had a stomach illnesses that started with vomiting for a few hours, advanced to diarrhea, and was on the mend within a couple of days. I thought I got the same thing (saw her on xmas) when my timeline and symptoms matched, until I got worse overnight!
How do you even handle a stomach bug with Crohn's? I'm absolutely discouraged and lost as to what to do. (I'm also sorry this is so long!)View Thread
See Related Digestive Disorders Communities
Women's Health Newsletter
Find out what women really need.
Spotlight: Member Stories
Helpful Tips
Helpful Resources
Related News
Report Problems to the
Food and Drug Administration
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.
Other Member Communities
- Dieting Club: 10 - 25 Lbs Member Community Share Your Tips and Support!
- Caregiving Member Community The Support and Understanding You Need!
- Parenting Friends Talking Member Community Get Support from Members Like You!
-
More Related Communities
The opinions expressed in WebMD User-generated content areas like communities, reviews, ratings, or blogs are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of WebMD. User-generated content areas are not reviewed by a WebMD physician or any member of the WebMD editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. WebMD does not endorse any specific product, service, or treatment.
Do not consider WebMD User-generated content as medical advice. Never delay or disregard seeking professional medical advice from your doctor or other qualified healthcare provider because of something you have read on WebMD. You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. WebMD understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.
Health Solutions From Our Sponsors
©2005-2013 WebMD, LLC. All rights reserved.
WebMD does not provide medical advice, diagnosis or treatment. See additional information.
