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Hi Everyone,
I'm sure that I'm stereotyping myself as a typical newbie with all of my questions. Thank you in advance for your patience and your insights!
So I'm starting to feel a little hopeful that my D is subsiding, but it's not completely there yet. I'm running out of time (I think) to wait for a formal diagnosis, as I'll begin teaching at the end of August, and in Sept. will be traveling to China. I was going to wait to make an appointment for a colonoscopy, but decided to go for it. I'll be 48 this month, so given that I'll need to do this 2 years from now anyway, I decided "what they hey."
Any advice here for a newbie into this thing? I'm especially wondering what I should ask the GI to do in terms of biopsies to help me try to diagnose these symptoms. Are there questions I should ask? Things I should request?
If there is a FAQ or a previous thread on this issue, my apologies for not seeing it, and I can be directed to it.
Thank you!!
Warmly,
Mary
Having Colonoscopy this Thursday - Advice?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Mary,
I think you are wise to go ahead with the colonoscopy now. I would make sure that the doc will take multiple biopsies from different areas of the colon. Also, if your doc is willing, you might suggest that they do stains of the biopsy specimens for mast cells. Mastocytic Enterolcolitis (ME) is one form of MC that is best diagnosed this way. You may indeed not have it, but is is simple to rule it out, IMHO. Good luck......the cleanout is the worst part of the procedure.
Hugs,
Polly
I think you are wise to go ahead with the colonoscopy now. I would make sure that the doc will take multiple biopsies from different areas of the colon. Also, if your doc is willing, you might suggest that they do stains of the biopsy specimens for mast cells. Mastocytic Enterolcolitis (ME) is one form of MC that is best diagnosed this way. You may indeed not have it, but is is simple to rule it out, IMHO. Good luck......the cleanout is the worst part of the procedure.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I Agree with Zizzle. Some people react poorly to the "clean out", but after is a great time to start fresh with probiotics and fresh, non-processed foods. From my personal experience for the clean out: start earlier in the day then what they tell you. Otherwise, you might be up half the night because you are still emptying out.
Polly covered what you should ask for. Good luck and keep us posted :)
Leah
Polly covered what you should ask for. Good luck and keep us posted :)
Leah
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Gabes-Apg
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Mary
G'day from Australia and welcome to the group
the cleanout is a 'big thing' for our bodies, i agree with leah start the pre a bit earlier and afterwards, and as zizzle and leah have said, be nice to your body afterwards with healthy nutritious, easy to digest meals.
Polly has the technical stuff covered. The GI may frown or query as to why you are asking for these tests, be strong, dont show any doubt, say you have read quite a few articles about Mast Cells and you want to see if they are there. (if you say that someone on a forum suggested it they will not take you seriously)
we can send you links to many articles to substantiate your request....
How long will your trip be to China?
G'day from Australia and welcome to the group
the cleanout is a 'big thing' for our bodies, i agree with leah start the pre a bit earlier and afterwards, and as zizzle and leah have said, be nice to your body afterwards with healthy nutritious, easy to digest meals.
Polly has the technical stuff covered. The GI may frown or query as to why you are asking for these tests, be strong, dont show any doubt, say you have read quite a few articles about Mast Cells and you want to see if they are there. (if you say that someone on a forum suggested it they will not take you seriously)
we can send you links to many articles to substantiate your request....
How long will your trip be to China?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Everyone,
My many thanks to you all! Well, half way through the prep, so that's good news! The worst part was just drinking down the stuff (I'm doing SuPrep). I don't know why I found it so distasteful! But now the hardest part is just being so darn hungry! And the bad thing is that my procedure isn't until 2:30 tomorrow afternoon. I'm going to be ravenous by then.
I really appreciate all the words of wisdom. I think (hope!) this GI will be a good one. When I went to see him last week, I told him that I had been concerned that I might be dealing with MC. He said right then that if I wanted to go ahead with a colonoscopy, he would be willing to do that.
At this point here's one thing that's making me scared -- this trip to China! It will be for almost two weeks. I'm definitely willing to jump onto working on my diet, but China is going to make it a real trick, I think. First of all, there's the language barrier, and some of the places I'm going are a little remote. Second, though, I believe that SO MANY things are cooked with soy, and their form of soy often is not gluten free. Any suggestions? I really do need some words of wisdom. I'm almost thinking that I'm going to have to insist on Entocort but I don't know. I'm putting the cart before the horse, I guess. Let me wait to see what the biopsy says.
Thanks again everyone.
My warm regards,
Mary
My many thanks to you all! Well, half way through the prep, so that's good news! The worst part was just drinking down the stuff (I'm doing SuPrep). I don't know why I found it so distasteful! But now the hardest part is just being so darn hungry! And the bad thing is that my procedure isn't until 2:30 tomorrow afternoon. I'm going to be ravenous by then.
I really appreciate all the words of wisdom. I think (hope!) this GI will be a good one. When I went to see him last week, I told him that I had been concerned that I might be dealing with MC. He said right then that if I wanted to go ahead with a colonoscopy, he would be willing to do that.
At this point here's one thing that's making me scared -- this trip to China! It will be for almost two weeks. I'm definitely willing to jump onto working on my diet, but China is going to make it a real trick, I think. First of all, there's the language barrier, and some of the places I'm going are a little remote. Second, though, I believe that SO MANY things are cooked with soy, and their form of soy often is not gluten free. Any suggestions? I really do need some words of wisdom. I'm almost thinking that I'm going to have to insist on Entocort but I don't know. I'm putting the cart before the horse, I guess. Let me wait to see what the biopsy says.
Thanks again everyone.
My warm regards,
Mary
Mary,
A member of the board named Ant lives in Hong Kong and eats out very frequently. He doesn't post much anymore, but he might be able to give you some tips. You can send him a private message to ask him about it. I'm sure he'll respond. He is from England, so you don't need to know Chinese.
Gloria
A member of the board named Ant lives in Hong Kong and eats out very frequently. He doesn't post much anymore, but he might be able to give you some tips. You can send him a private message to ask him about it. I'm sure he'll respond. He is from England, so you don't need to know Chinese.
Gloria
You never know what you can do until you have to do it.
Hi All,
My many thanks, Gloria, for your helpful advise about the person to contact. I will definitely be in touch with him.
Okay so I wasn't supposed to start the second part of the prep today until a little bit later since my procedure isn't until 2:30 -- a late-in-the day one. BUT, at least it allowed me to get in a good 40-minute workout, so that can't be bad!
Thanks again, all.
Best,
Mary
My many thanks, Gloria, for your helpful advise about the person to contact. I will definitely be in touch with him.
Okay so I wasn't supposed to start the second part of the prep today until a little bit later since my procedure isn't until 2:30 -- a late-in-the day one. BUT, at least it allowed me to get in a good 40-minute workout, so that can't be bad!
Thanks again, all.
Best,
Mary
Hi Mary,
It is probably better to communicate directly with Ant but if you are unable to connect with him I believe he has a "To the Chef Card" in English at the top of one of the main pages of this forum.
You can modify it for your needs and I believe run it through some kind of free online translator to translate it to Mandarin and I believe your homeowner computer and printer can probably handle this.
He probably has a translation already done that he could email you. That would help you tremendously on your Chinese trip.
If you can connect with him directly that would be best.
PS. Even if you don't end up taking Entocort I'd press for a prescription if you are diagnosed with MC. If you are doing well you don't have to take it but it might give a comfort level to have it with you on Chinese trip.
Also don't wait until the last minute to fill an Entocort prescription. Walgreens didn't have it sitting around on a shelf. They had to order it in for me from Orlando and it took two days.
Hope your procedure is uneventful and there is loads of travel advice on this forum ask if anymore questions. Brandy
It is probably better to communicate directly with Ant but if you are unable to connect with him I believe he has a "To the Chef Card" in English at the top of one of the main pages of this forum.
You can modify it for your needs and I believe run it through some kind of free online translator to translate it to Mandarin and I believe your homeowner computer and printer can probably handle this.
He probably has a translation already done that he could email you. That would help you tremendously on your Chinese trip.
If you can connect with him directly that would be best.
PS. Even if you don't end up taking Entocort I'd press for a prescription if you are diagnosed with MC. If you are doing well you don't have to take it but it might give a comfort level to have it with you on Chinese trip.
Also don't wait until the last minute to fill an Entocort prescription. Walgreens didn't have it sitting around on a shelf. They had to order it in for me from Orlando and it took two days.
Hope your procedure is uneventful and there is loads of travel advice on this forum ask if anymore questions. Brandy
Hi Guys,
Inflammation was seen during the procedure today: "patchy eruythena"? up to 50 cm in the colon. I'm not sure. I'm still a little loopy. Feeling very scared it's ulcerative colitics. They told me diet had nothing to do with it. The hope that's not is that there's no blood, I'm 47, and the inflamation is patchy.
Over the last 3 years I've had to have 2 lumpectomies on my breasts, I've had MRSA from a laceration, 3 melanomas, and now this. I'm kind of feeling I'm about ready to throw in the towel. Any words of wisdom are appreciated. I'm headed to bed now.
Thanks for your wisdom.
Mary
Inflammation was seen during the procedure today: "patchy eruythena"? up to 50 cm in the colon. I'm not sure. I'm still a little loopy. Feeling very scared it's ulcerative colitics. They told me diet had nothing to do with it. The hope that's not is that there's no blood, I'm 47, and the inflamation is patchy.
Over the last 3 years I've had to have 2 lumpectomies on my breasts, I've had MRSA from a laceration, 3 melanomas, and now this. I'm kind of feeling I'm about ready to throw in the towel. Any words of wisdom are appreciated. I'm headed to bed now.
Thanks for your wisdom.
Mary
I know things seem bleak right now Mary, but try to take this one day at a time. What I can say at this point is that any doctor who tells you that food has nothing to do with the health of your intestines shouldn't be a GI. Even if it is ulcerative, your diet still matters. Take this thing one day at a time. Wait for the Dx from the biopsies and then you can think about a game plan. Don't give up. We are here for you :) rest now.
Leah
Leah
Hi Mary,
Patchy erythema simply means scattered areas of redness. That's very common with microscopic colitis, and it was noted on my colonoscopy report, also. Those are areas of inflammation where MC is active. If the examining doctor couldn't see any visible lesions, you probably don't have UC. The pathologist will determine the diagnosis when he or she examines your biopsy samples under the microscope. I'm guessing it will be lymphocytic colitis.
Regarding the other issues, many of us have old battle scars, but we're still kicking. For example, my colon, cecum, and terminal ileum are missing, but it's only a minor inconvenience, now that I've adjusted to it. The human body is extremely adaptable.
I hope your pathology report will be much better than you expect.
Tex
Patchy erythema simply means scattered areas of redness. That's very common with microscopic colitis, and it was noted on my colonoscopy report, also. Those are areas of inflammation where MC is active. If the examining doctor couldn't see any visible lesions, you probably don't have UC. The pathologist will determine the diagnosis when he or she examines your biopsy samples under the microscope. I'm guessing it will be lymphocytic colitis.
Regarding the other issues, many of us have old battle scars, but we're still kicking. For example, my colon, cecum, and terminal ileum are missing, but it's only a minor inconvenience, now that I've adjusted to it. The human body is extremely adaptable.
I hope your pathology report will be much better than you expect.
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.