Good Morning,
I would like any support about how to get started with a food plan and other advice that you can offer. I am on Budesonide, now on 3mg and my symptoms continue to be terrible fatigue, no appetite and after losing 22 lbs, I have not gained any weight. I have no diarrhea, but now experience constipation!! Right after diagnosis, the doc told me to do a high fiber diet. Clearly, he was good at detecting and giving the drugs but no clue about the diet. He is frustrated that I have not gained weight and insists that I am not eating enough! No dietitian has been any help. Although one did send out a request to the dietitians in her professional group and from over 50 people no one responded.
I just sent a sample for testing to Enterolab and await the results. Meanwhile I have been eating gluten free and dairy free for about 7-10 days. I have been eating coconut yogurt, but cautious of the 3mg of fiber. I have also been eating almond yogurt and await to see about the nuts.I have eaten eggs about 2x a week and I have been increasing protein with ground turkey,white fish and chicken. Otherwise, I eat a banana, some baked apple-no skin and
some blueberries, but never more than 1/2 cup.
I live on the Boston area and only see 4 docs at Mass General who list microscopic colitis and all GI's at MGH are booking into 2019. I did ask to have my records sent there,but waiting that long for any help is CRAZY and I am not sure they have a handle on the food piece either.
Has anyone also been found to have SIBO? That is one thing the last dietitian was certain I should be tested for.
Spoke with Wayne at length yesterday and he was wonderful. Also, he mentioned the lab tests can be somewhat hard to read,but i hope they can help and someone can help me if I am confused about the interpretation.
Thanks a million. If anyone lives in Massachusetts, please reach out!!
Jeanne
[[/list]
Recently Diagnosed and Need Help
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jeanne,
I'm sure others will come along with advice soon! However, I am based in Boston and I wanted to share that I've found a supportive GI at Brigham and Womens. My memory is that the original apt. was around a 2 month wait, however depending on the doc you see you may be able to get in sooner and/or get on a cancellation list.
At the time I was looking for a new doc, Mass General was booking too far out for me to wait (I remember thinking it was ridiculous!) Regardless, I'm very happy with my doc.
Feel free to send me a private message if you want more details.
Good luck!
Lisa
I'm sure others will come along with advice soon! However, I am based in Boston and I wanted to share that I've found a supportive GI at Brigham and Womens. My memory is that the original apt. was around a 2 month wait, however depending on the doc you see you may be able to get in sooner and/or get on a cancellation list.
At the time I was looking for a new doc, Mass General was booking too far out for me to wait (I remember thinking it was ridiculous!) Regardless, I'm very happy with my doc.
Feel free to send me a private message if you want more details.
Good luck!
Lisa
private post
How do you send a private post? Someone responded to me and wanted me to send them a private post if I wanted more info. I am new at this and don't see how you send a private post. I only have her first name. Where do I click for a private post and how do i do it with only that much info?
This is a real learning curve.
Thanks!
This is a real learning curve.
Thanks!
private post
How do you send a private post? Someone responded to me and wanted me to send them a private post if I wanted more info. I am new at this and don't see how you send a private post. I only have her first name. Where do I click for a private post and how do i do it with only that much info?
This is a real learning curve.
Thanks!
This is a real learning curve.
Thanks!
Hi Jeanne,
To send Lisa a private message, just click on the button that says "pm" near the bottom of one of her posts. A window will open where you can write your message to her. When you are through writing the message, click on the "submit" button below the window and the system will send it to her. If/when she replies, look up at the top of the page where it says "You have no new messages". If you have a message it will say "You have one new message". That phrase is a link to your messages. just click on it and your messages will be listed. Click on the one that you want to read, and it will be opened.
If you want to reply, click on the button that says "post reply" and a message window will be opened where you can write your response. When you're through writing, click the "submit" button.
I hope this helps.
Tex
To send Lisa a private message, just click on the button that says "pm" near the bottom of one of her posts. A window will open where you can write your message to her. When you are through writing the message, click on the "submit" button below the window and the system will send it to her. If/when she replies, look up at the top of the page where it says "You have no new messages". If you have a message it will say "You have one new message". That phrase is a link to your messages. just click on it and your messages will be listed. Click on the one that you want to read, and it will be opened.
If you want to reply, click on the button that says "post reply" and a message window will be opened where you can write your response. When you're through writing, click the "submit" button.
I hope this helps.
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.
Hi Jeanne,
Sorry if the request for a private message was confusing! I'll just drop all the info below. Feel free to comment if you have any questions. I've seen quite a few docs around the city and I know how confusing it can be.
I go to Brigham and Women's Crohn's and Colitis Center in Chestnut Hill. I see Dr. Josh Korzenik there and have had a really positive experience.
A few notes: Dr. Korzenik is the director of the center and his schedule always seems to be the most chaotic so you'll probably have to wait the longest to see him. I've also heard good things about Dr. Hamilton. There's a nurse there that I really like -- Beth-Ann Norton, you might be able to get in quickly to see her as well.
Overall I've found Dr. Korzenik to be a good listener, insightful, and caring. I've been at this with him for a year and we've had check ups every 6-8 weeks. I also have a few other medical issues and he's done a good job staying in touch with my other providers -- these are all standard things, but sometimes things you don't find in a doctor.
He's supportive of my diet and is often the first to ask if a flare came from stress or something I ate. The center also has a nutritionist on staff and I've met with her a few times. Overall, I would say that Dr. Korzenik and the center are open to other treatment options, but also suggest medications when they think they're appropriate. After being with him for a year I trust him implicitly; he's top in his field and always backs what he says by research but honestly he's just such a genuine, caring man.
I hope that helps! Let me know if you have questions or want more info.
-Lisa
Sorry if the request for a private message was confusing! I'll just drop all the info below. Feel free to comment if you have any questions. I've seen quite a few docs around the city and I know how confusing it can be.
I go to Brigham and Women's Crohn's and Colitis Center in Chestnut Hill. I see Dr. Josh Korzenik there and have had a really positive experience.
A few notes: Dr. Korzenik is the director of the center and his schedule always seems to be the most chaotic so you'll probably have to wait the longest to see him. I've also heard good things about Dr. Hamilton. There's a nurse there that I really like -- Beth-Ann Norton, you might be able to get in quickly to see her as well.
Overall I've found Dr. Korzenik to be a good listener, insightful, and caring. I've been at this with him for a year and we've had check ups every 6-8 weeks. I also have a few other medical issues and he's done a good job staying in touch with my other providers -- these are all standard things, but sometimes things you don't find in a doctor.
He's supportive of my diet and is often the first to ask if a flare came from stress or something I ate. The center also has a nutritionist on staff and I've met with her a few times. Overall, I would say that Dr. Korzenik and the center are open to other treatment options, but also suggest medications when they think they're appropriate. After being with him for a year I trust him implicitly; he's top in his field and always backs what he says by research but honestly he's just such a genuine, caring man.
I hope that helps! Let me know if you have questions or want more info.
-Lisa
Hi Jeanne,
I am so sorry that you are going through this, but hopefully you will get it under control. It sounds like Lisa has given you good information about a good doctor in the Boston area. I live 40 miles northwest of Boston and see a doctor in Nashua who I like very much. I had lost a lot a weight when this all began and had D 8-10 times a day. When I finally found my doctor he put me on Entocort which helped then we progressed to Imuran. I am now down to 25 mg of Imuran a day. The first thing I did was to give up gluten, eggs, dairy, and soy. I found a great acupuncturist in Pepperell who helped a lot. Once I began healing (about a year) I was able to first start eating eggs, then diary in moderation, but never eat gluten. When I was trying to gain weight one thing I did was have a smoothie every day made with almond milk, frozen bananas, strawberries, protein powder and coconut ice cream. It settled well and help with some weight. It's been about 6 years now and things are a lot better, never perfect, but probably as good as it will be. My doctor is: Dr. Srikrishna Nagri, Gastroenterologist in Nashua, NH. He has been very good.
If you want more info. just PM me.
Nancy
I am so sorry that you are going through this, but hopefully you will get it under control. It sounds like Lisa has given you good information about a good doctor in the Boston area. I live 40 miles northwest of Boston and see a doctor in Nashua who I like very much. I had lost a lot a weight when this all began and had D 8-10 times a day. When I finally found my doctor he put me on Entocort which helped then we progressed to Imuran. I am now down to 25 mg of Imuran a day. The first thing I did was to give up gluten, eggs, dairy, and soy. I found a great acupuncturist in Pepperell who helped a lot. Once I began healing (about a year) I was able to first start eating eggs, then diary in moderation, but never eat gluten. When I was trying to gain weight one thing I did was have a smoothie every day made with almond milk, frozen bananas, strawberries, protein powder and coconut ice cream. It settled well and help with some weight. It's been about 6 years now and things are a lot better, never perfect, but probably as good as it will be. My doctor is: Dr. Srikrishna Nagri, Gastroenterologist in Nashua, NH. He has been very good.
If you want more info. just PM me.
Nancy