New Doctor!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
Sara East
- Little Blue Penguin
- Posts: 36
- Joined: Thu Jun 12, 2008 12:16 pm
- Location: New Hampshire
- Contact:
New Doctor!
So I had my first appointment with Dr. Friedman at the Brigham and Womens hospital in Boston. She's a specialist in LC and she really gave me hope! She went over my whole history and even got the slides from my last colonoscopy to look over herself. She said she wanted her own department to look at the biopsies. Dr. Friedman said I was very young to have LC and thinks there might be an underlying cause. She seems to think I have Celiacs Disease but I've only had the blood tests for that which doesn't always show Celiacs. So I go in on the 28th for Endoscopy in which she will take biopsies of my small intestine and from there she said she could tell. In the meantime she put me on Lotronex to try but I haven't filled it yet. I had to sign a paper saying I read the possible side effects and my doctor had to sign it to, I also have to check in with her once a day via email while I take it. I guess it was off the market for a while because it can block blood flow to the intestines and has caused some serious problems, plus it can only be taken by women. Have any of you tried it? Not sure if I'm up for all of that! Hopefully the biopsies will show Celiacs and I can get better by a diet and no drugs. My aunt-in-law was just diagnosed with LC and she started drinking that Dan Active stuff. She said two of those a day have greatly reduced her symptoms so I'm giving it a try! She said only the Dan Active works not some of the other brands. Thought that was kind of interesting and would pass it along. To top it all off, I just found I was pregnant! I have 3 kids and really don't want anymore, it was completely an accident. But I've been having a lot of pain and bleeding and the doctor thinks it's an ectopic pregnancy. I all ready had one and had to have emergency surgery, once you have one you are more susceptible to another ectopic pregnancy. Luckily I caught it early enough so I might not have to have surgery. On the other hand if it's a regular pregnancy I can't keep the baby because of all the meds I'm on. The doctor said it would have all kinds of birth defects because of all the opiates and other meds I have to take, even if I stopped now. I've been on 40 mg a day of IV opium plus the Elavil and Bentyl. I just don't know what to do? The doctor keeps telling me I need to terminate it but I have a hard time thinking of killing my baby. But there is no way I could take care of a severely disabled child even if I do carry to term, plus I just don't have the money it would take to care for a child like that. When I got pregnant with my 3rd the doctors told me I could keep taking some of my meds like the Bentyl which I did and when Anderson was born he couldn't breathe and ended up in the NICU hooked to machines. I was terrified thinking I did that to my baby and even the doctor thought the meds might have played a part in it. Luckily he recovered and $60,000 later in medicalbills he came home in good health. Sorry this is so long but I just don't know what to do, we don't have the money for another baby and all ready live in a 2 bedroom TINY apartment. If I wanted another baby I was going to wait until my colitis was gone so I didn't have to take meds and to wait until we bought a house. Okay, I'll shut up now.
Hi Sara,
Sorry to hear the bad news, but I'm glad you found a doctor who seems interested in pursuing your colitis issues. I don't understand why she thinks your age is a significant factor with MC. While it's true that statistically, you are on the young side of the chart, that's primarily because doctors haven't been doing a very good job of diagnosing MC in younger people. This is because MC is a disease that cannot be properly diagnosed unless the doctor knows how to look for it, and actually does look for it. You can't diagnose MC accidentally, or by default. There's only one way, and that's by examining slides of biopsy samples taken from the mucosa of the colon. Since colonoscopies are seldom done on younger people, (let alone biopsies taken), statistically, very few cases of MC are successfully diagnosed in younger people. It's a self-fulfilling prophecy - doctors "know" that only older people get MC, so they don't normally look for it in younger people, and they can't find it if they don't look for it.
To show how wrong that viewpoint is, we have members whose kids have been diagnosed with MC in their teens, and younger, and I believe that one child was either two or three years old, when diagnosed. Doctors need to be more aware that anyone, (at any age), can have MC.
Is MC an early stage of celiac disease? Maybe, but so far, none of our members have been diagnosed with cealic sprue, to my knowledge. We do have some members who are celiacs, but they were diagnosed with sprue, before being diagnosed with MC. Many of us are just as gluten sensitive as celiacs, but we fail the classic diagnostic criteria for celiac sprue, (that is, we show negative results on celiac blood tests, and negative small intestinal biopsy results for villous atrophy).
I'm not aware of any members who have taken Lotronex, but I could certainly be mistaken. Maybe someone else has better information on this.
It's true that Dan Active contains a probiotic strain that has been claimed to be beneficial for certain digestive system issues, and I think that it's the only mainstream product that can make that claim, though there are some other brands available in some locations. Dan Active is sold under the name Actimel in Europe, I believe. If the strain of bacteria that it contains happens to be the one that your system needs, (L. Casei Defensis, I believe), it may prove to be beneficial. There are many beneficial strains in the average colon, however, each doing it's own job.
Tex
Sorry to hear the bad news, but I'm glad you found a doctor who seems interested in pursuing your colitis issues. I don't understand why she thinks your age is a significant factor with MC. While it's true that statistically, you are on the young side of the chart, that's primarily because doctors haven't been doing a very good job of diagnosing MC in younger people. This is because MC is a disease that cannot be properly diagnosed unless the doctor knows how to look for it, and actually does look for it. You can't diagnose MC accidentally, or by default. There's only one way, and that's by examining slides of biopsy samples taken from the mucosa of the colon. Since colonoscopies are seldom done on younger people, (let alone biopsies taken), statistically, very few cases of MC are successfully diagnosed in younger people. It's a self-fulfilling prophecy - doctors "know" that only older people get MC, so they don't normally look for it in younger people, and they can't find it if they don't look for it.
To show how wrong that viewpoint is, we have members whose kids have been diagnosed with MC in their teens, and younger, and I believe that one child was either two or three years old, when diagnosed. Doctors need to be more aware that anyone, (at any age), can have MC.
Is MC an early stage of celiac disease? Maybe, but so far, none of our members have been diagnosed with cealic sprue, to my knowledge. We do have some members who are celiacs, but they were diagnosed with sprue, before being diagnosed with MC. Many of us are just as gluten sensitive as celiacs, but we fail the classic diagnostic criteria for celiac sprue, (that is, we show negative results on celiac blood tests, and negative small intestinal biopsy results for villous atrophy).
I'm not aware of any members who have taken Lotronex, but I could certainly be mistaken. Maybe someone else has better information on this.
It's true that Dan Active contains a probiotic strain that has been claimed to be beneficial for certain digestive system issues, and I think that it's the only mainstream product that can make that claim, though there are some other brands available in some locations. Dan Active is sold under the name Actimel in Europe, I believe. If the strain of bacteria that it contains happens to be the one that your system needs, (L. Casei Defensis, I believe), it may prove to be beneficial. There are many beneficial strains in the average colon, however, each doing it's own job.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sarah,
My heart goes out to you.
As for the Lotronex - I believe this was the meds I was taking that caused a bowel obstruction. Tex, correct me if I'm wrong.
Anyways, this is the place for you to vent and "talk" when you need someone to listen. We are here through thick and thin!
Good luck to you Sarah, I hope you have a good support system and hugs surrounding you! If not - here's some from me..............
Love,
Mars
My heart goes out to you.
As for the Lotronex - I believe this was the meds I was taking that caused a bowel obstruction. Tex, correct me if I'm wrong.
Anyways, this is the place for you to vent and "talk" when you need someone to listen. We are here through thick and thin!
Good luck to you Sarah, I hope you have a good support system and hugs surrounding you! If not - here's some from me..............
Love,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Mars,
You are quite correct. Your post about that is the last one in this thread:
http://www.perskyfarms.com/phpBB2/viewt ... t=lotronex
Lotronex has a pretty bumpy history:
http://www.lawyerseek.com/Practice/Phar ... ronex-P87/
Tex
You are quite correct. Your post about that is the last one in this thread:
http://www.perskyfarms.com/phpBB2/viewt ... t=lotronex
Lotronex has a pretty bumpy history:
http://www.lawyerseek.com/Practice/Phar ... ronex-P87/
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Sara,
I'm thinking of you. I hope all these issues resolve themselves. Have you tried a gluten free diet? You don't have to have celiac to get relief from the diet.
I'm young too...diagnosed at 30, symptoms started at 29. Now 36 and trying to get over a flare that started for an unknown reason. I think I'm making progress though.
Katy
I'm thinking of you. I hope all these issues resolve themselves. Have you tried a gluten free diet? You don't have to have celiac to get relief from the diet.
I'm young too...diagnosed at 30, symptoms started at 29. Now 36 and trying to get over a flare that started for an unknown reason. I think I'm making progress though.
Katy
Sara,
Concerning your doctor's comment:
Incidentally, our newest member has a child who was diagnosed with MC at two and a half years of age.
Tex
Concerning your doctor's comment:
The cause is almost certainly gluten sensitivity, (rather than celiac sprue). Gluten sensitivity, (while testing negative to celiac disease), is virtually an uncatalogued disease, as far as the medical profession is concerned).Sara wrote:Dr. Friedman said I was very young to have LC and thinks there might be an underlying cause.
Incidentally, our newest member has a child who was diagnosed with MC at two and a half years of age.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.