Yeah Dr. Lewey

[starfire]

I understand that at one time they did colonoscopies without sedation. I much prefer the way it's done today. My first one was with insufficient sedation and I remember a lot of pain although I was "in and out". I'll never have another that way if I can help it. I have absolutely no desire to remember any of it.

Love, Shirley

[jme22]

I can relate Shirley! During my last colonoscopy I could hear the doctor and nurse talking and the Beatles CD playing in the background. I remember thinking when am I going to get knocked out completely but it never happened. At one point when the pain was pretty significant (I'm guessing it's when they clipped out the biopsy samples) I raised up off the table and grabbed the nurse's arm and shouted "You're hurting me!" (Not something I would do in a normal state, let me just add!) I left the room crying and in agonizing pain, which was not at all like my prior colonoscopy, which frankly was like taking a nice little nap.

I spoke at length with my GI doc about this later and he said he kept upping the meds via my IV but he just couldn't get me knocked out. You can best believe that I told him to drug me heavily for my subsequent endoscope. Thankfully, that went off without a hitch and I remember nothing about it.

I don't have an explanation, nor does my doctor, about what happened with the sedation during the colonoscopy but you can best believe we'll talk about it before my next colonoscopy so we don't repeat this last disaster!

Julie

[tex]

My question is... how long after the colonoscopy can you ask that the biopsies be stained, or do they have to be fresh?

I seem to recall someone mentioning that they had it done a year or two later. I believe that those samples are kept for at least several years, maybe longer. Your GI doc would need to request the analysis, and he or she should know what the time limit is, if there is one.

Tex

[tex]

Were you conscious and fully aware during the procedure?

Ant and Julie,

Back when I was still reacting, those drugs didn't work on me. About 2 years after that colonoscopy exam, I broke my left arm, and I told the ER doc that the painkiller they were giving me by IV infusion wouldn't work. He just laughed. After they tried a double dose, and it still had no effect, he stopped laughing, and became rather somber - totally at a loss about how to proceed. Finally, in desperation, he asked me what I thought he should do. I told him to go ahead and set the broken arm. When he replied that it would hurt, I pointed out that it was already plenty painful, and it wasn't ever going to get any better, unless he set it. Then he gave me a shot in the bone, which hurt like hell, but didn't seem to help, either, and he finally set it in place and splinted it. After that, it felt a little better.

My theory is that some of us who have been gluten-sensitive long enough to have acquired a significant amount of peripheral neuropathy, simply do not respond to certain painkillers and various similar drugs, because of our central nervous system damage. The GI doc who did the colonoscopy, assured me that I wouldn't remember anything about the procedure, either, but most of it is still vivid in my memory, and I can still remember watching the monitor during the entire procedure, and I can still clearly visualize those patches that were a darker shade of pink, that I asked him about, and I can still remember how he shrugged, and answered, (probably caused by a previous infection. ). That was almost 11 years ago.

Tex

[irisheyes13]

This a great thread and it's wonderful to see a physician who is "in our court" on this disease. Dr. Lewey's website is enlightening. I watched the video of himself having his colonoscopy and he was alert throughout it.

I have had 3 colonoscopies over a 20 year period with biopsies finally taken on the last one with the dx of MC. The first one was when I was 21 years old and I was awake and alert throughout the entire procedure. I even had a monitor to watch everything and the GI explained everything he was doing. It was fascinating.

The second one didn't go so well. I was given a twilight sedative and don't remember anything about it but when I was in the recovery room the nurse explained that it got a little "touch and go" during the procedure so I asked her what she meant. She explained that I had a "fight or flight" reaction during the beginning of the procedure and sat up in the middle of it and grabbed the scope and started swinging it at them. I was mortified! They then had to give me a general anesthetic to finish the exam. I tried to apologize to everyone but they were very understanding and laughed it off. The GI said it was no big deal but if I had broken the scope, it would have been an expensive bill to the insurance company. Due to what happened on that one I had to have a general anesthetic for the latest one which makes me very ill afterward but it was uneventful at least.

[TooManyHats]

This is interesting as it is just about a duplication of the list of spices and ingredients that comes under the heading of Balsam of Peru, which I was diagnosed as allergic to:

benzoates
Cinnamon
Chili powder
Cloves
Anise
Nutmeg
Curry powder
Hot paprika (cayenne)

My list also includes ginger and regular paprika and I'm surprised to not see them on this list. It also includes vanilla, which I'm not sure I react to.

[ant]

Dear Tex and Kelly

This is fascinating. The next time I have a colonoscopy I worry I might accidentally give my GI a piece of my mind. In addition to blotting out memory, is it a sort of truth drug?

best ant.

[irisheyes13]

Ant,

Speaking only for myself (and I am unique to how my body reacts to meds), I was told that I had A LOT to say to them while I was under the twilight sedative. I don't know what the specific drug(s) administered were however. The nurse and dr. said I told them to stop hurting me lol. They also said that it isn't a typical reaction but they have seen it before.

[Foxnhound8]

DH is a "GI pathologist", but also is a typical "western" type doc who doesn't believe anything new in medicine without it being proven in a double blind study done by someone who is then published in a scientific journal. He handed me a study in which the conclusion essentially said, patients with increased mast cells ie more than 20 per high powered field were given specific drugs affecting mast cell mediator function and release. It also said there were other staining techniques to enhance mast cell identification. At follow-up 67% of the patients who received "H1 and H2 receptor antagonists with or without mast cell mediator release inhibitor showed cessation of diarrhea or significant reduction in diarrhea". This was a pathology journal, so no specific mention was made about the med names. This is the "latest" info he could find on this in the "official" journals - it is dated Match 2006 :-( What can you expect from GI docs who would never read any literature outside the "mainstream" journals?

foxnhound

[mbeezie]

Foxhound,

The mast cell inhibitors are Gastrocrom and Ketotifen. Ketotifen is not available in the US but people who need it get it from Canada - supposedly it's better tolerated than gastrocrom. H1 and H2 blockers are standard treatment, in fairly large doses. Diet is important as well as food is a very common trigger for symptoms.

It is now known that one can still have mast cell issues without an elevation in mast cell number. The mast cells are "twitchy" and easily release their contents (degranulation). It's the effects of the cytokines, primarily histamine that cause diarrhea. It may very well be that people who experience this have had a disruption in the enzyme diamine oxidase that helps to clear histamine in the gut. Mastocytosis (the serious mast cell disease) has clear diagnostic criteria but Mast Cell Activation Syndrome has not been defined yet. What we call mastocytic enterocolitis is not defined yet either. I am guessing there is more mast cell info in allegy/immunology journals than GI journals. Here is a recent article to share with your husband http://xa.yimg.com/kq/groups/13206694/1 ... ec2010.pdf

Stay tuned - I am sure we will hear much more about mast cells in the next few years.

Mary Beth

[MBombardier]

I woke up two or three times during my colonoscopy, and remember talking to the doctor as well as him talking to me. I wasn't nice. My records said they gave me four times the usual amount of sedation. This was my 10th time going under the knife, so to speak, and I have always been hard to put under. I have been told that it is because I took so many drugs in my wild years. I am anesthesia-resistant, and the few anesthesiologists I have talked to have seemed to agree that is why.

The GI told me to be sure that next time I get propofol as an anesthetic, which actually they started using for all colonoscopies several days after I had mine. I can hardly wait.

Thanks, Tex--I think I will ask my GI about retro mast-staining of my biopsies.

[takef586]

I wonder if anyone knows, whether ME and LC are mutually exclusive, or can they coexist? After reading some information about ME, it looks to me like my symptoms are closer to it than to LC, which I have been DX on the basis of biopsy - unfortunately I had no biopsy of the small intestine made...

[tex]

Marek,

They are both forms of MC, but you can certainly have both at the same time, just as you can have both the markers of collagenous colitis and lymphocytic colitis at the same time. When both CC and LC markers are present, many pathologists refer to the diagnosis as simply MC. Many of us seem to have mast cell involvement, in addition to our CC, LC, or whatever type of MC we might have. Currently, at least a dozen different forms of MC have been documented, but anyone can have virtually any combination of them.

Tex