Need Input that I'm not going to get from Dr.

[tex]

Hi Dorothy,

Gabes had some great advice. But regarding diet selections recommended by Dr. Fine, remember that he reached remission about 30 years ago and as I recall, it was many years after that when he decided to become a vegan. That might affect his recommendations because he's been in remission so long that he can get away with some foods that we may not be able to handle. I have no idea either, what he might have against squash and zucchini. I don't recall any posts by someone who had any problems with them.

You have to remember that the SCD is not an ideal diet to treat MC. It requires some modifications to make it work for MC. IMO we're better off if we start with a palo diet and modify it to fit our needs (but that's just my opinion).

Tex

[dolson]

I can eat corn, but when I eat anything corn...I make sure it's soft. Tortilla wraps have to be soft. Yummy with ground beef and some tomatoes. I am careful about eating anything hard. I buy the soft Tortilla wraps and have no problem. My problems seem to originate with hard food. That's my No-No! I am doing much better. I still have brain fog and it sends me a windin'. My bathroom visits are becoming more normal and only occasionally do I have watery D. I owe it all to y'all! It's a wonderful day in the neighborhood. Dorothy

[dolson]

I do better with soft foods. I'd be careful with potato chips. When I cheat and I'm starving, I get a few (not soaked) pecans. It's worked out okay, but lately, POW, it was all in the toilet with WD. You think you can get away with stuff, but you really can't. What helps me the most is pumpkin pie with no crust, of course. It soothes the savage beast. I use honey to sweeten the pumpkin and some brown sugar. It doesn't raise my blood sugar. Surprising! It seems to have anti-diarrhea properties. I have to go soft and not cheat, but sometimes I get so hungry, I become desperate. I'd love to have some sunflower seeds, shell and all, but that's out. Dorothy

[Charlene]

Hello. Although I am registered as "Charlene", I'm not her - I'm her husband, Paul. I am her sole full-time caregiver. She was finally diagnosed by her GI doctor yesterday with Collagenous Colitis, which I understand is a type of Microscopic Colitis. Her symptoms first manifested themselves in April of 2019 resulting in as many as 15 episodes of runny diarrhea a day with no warning that it was about to happen.
A bit of background, Charlene is 83 years old and in the summer of 2018 she broke both of her hips in two separate falls. This necessitated complete replacement of both hips and a total of 10 weeks in the hospital. She is now on a walker and is quite frail. Her balance is quite bad and she is an extreme fall risk.(if she's moving, I'm walking behind her) It also became necessary for both of us to undergo cataract surgery during the summer of 2019. She also has some dementia and is not able to process information well or think things through to a logical result. We do have a home health care nurse who visits her weekly.
Charlene has hypothyroidism and is taking levotyroxin for that condition.
Now, I - am - not - a - cook! (Pretty good with a grill through.) All my life someone else has prepared my food (Mother, Army Cooks, Wife, etc.) After Charlene's first hip injury, meal preparation (and everything else) became my responsibility. I have been able to educate myself in the culinary arts a bit. At least to the point where I can easily follow a recipe without ruining supper! I discovered I kind of like cooking after all!
In reading the posts on this forum I began to alter our diet and have taken Charlene off of all caffeine, all dairy and MOST gluten (still learning about that). At the recommendation of her primary care physician, I also took her off of all vegetables except potatoes and added a dietary fiber supplement (the gummy ones) to her medication regimen. This has resulted in a reduction of the diarrhea episodes to about three a day and a it's just a bit firmer instead of completely runny. Of course she does wear Depends at all times as she also has urinary incontinence
In June of 2019, I got her PCP to refer her to a gastroenterologist. The GI doc then did a battery of stool tests and scheduled her for a colonoscopy (which she tolerated very well.) At the follow-up diagnosis appointment with the G/I doc, he told us she had Collagenous Colitis and prescribed, what else, BUDESONIDE. (3 mg, three capsules at a time daily) I informed him about the dietary restrictions I had imposed and he said, of course, that MC is not diet related and that she could return to eating a normal diet. I DON'T THINK SO!
I'm trying to re-educate myself to be able to prepare meals in the "suggested eating plan" found on this forum. (For which I am profoundly grateful!) I have perused the recipe section and found some that should be palatable for her. If anyone has any suggestions for gluten free/dairy free cookbooks, please let me know.
Any suggestions for other things I should do/know would also be appreciated.
Sorry this first post is so long and I'll try to keep them shorter in the future.
Thank You

[tex]

Hi Paul,

Welcome to the group. I'm sorry that Charlene has so many issues to deal with. I'm hoping that some of the other members will come along and offer some suggestions on recipes and meals, because I'm a pretty basic cook, myself. Basically, you want to stick to whole, safe, foods, with no processed foods. Red and yellow potatoes are easier for MC patients to digest than russets. Likewise, waxy rice is easier to digest than ordinary rice. See the newsletter at the following link for an article regarding the digestion of starches:

https://www.microscopiccolitisfoundatio ... 633360.pdf

When we're recovering, we have to minimize sugar and fiber, especially indigestible fiber, to minimize irritating the gut.

A little gluten can cause worse symptoms than a lot of gluten, because the immune system becomes more sensitive as we avoid gluten (until the antibody level has time to decay). Besides, a little gluten will prevent healing. Digestion of gluten results the creation of gluteomorphins (gliadorphins), which are addictive for the brain. Therefore, we have to avoid it 100 %. 99.99 % won't do.

Again, welcome aboard, and please feel free to ask anything.

Tex

[dolson]

I think going soft is a sure bet for me. I have to be careful with chips. I can eat potatoes but potato chips I eat sparingly. It's the sharpness that I have to be careful with, so I eat sugar-free apple sauce like crazy and I love it. I eat it with every meal and I think I am healing. I can eat corn but eat corn chips sparingly. Hope that helps. We are so different! Dorothy

[dolson]

It's the sharpness of them going through my gut like a knife, so I eat a few with precaution. My fave is barbecue potato chips! Man oh Man, but it's the spices and sharpness, so it's a No Go!

[Erica P-G]

It’s been a while since a post was placed here so I thought I’d give it a tiny update

The last 7 years (yes 7 where has the time gone!) so much good discussion has been said here on this post.

I hope it has jogged some thinking and given another piece of someone’s puzzle on their individual journey through Colitis.

I’ve tried the gamete of things regarding this from medication - foods - mindfulness, and of course removing as much stress from life as possible.

What my journey has boiled down to so far is I needed VitD and Magnesium including complex B’s. Once I found my real basic foods and healed my intestinal lining the best I could I have only been able to expand my foods a little bit.

To much sugar (no matter what it’s in, food, drinks, alcohols etc…is a no win with colitis) and stress coupled with unsatisfying sleep will continue to curse my colitis.

I still have not found a Dr who has learned anymore than what we all have discussed here….I keep wishing I didn’t have colitis it’s such a ebb/flow kind of thing with it’s unpredictability.

I do more things than I did 7 years ago though! It helped to explant my toxic breast implants 3 years ago…. I think I’ve healed even more within the intestines since then as my Enterolab results in 2020 gave pork back to me with no reactions.

I just wanted to make these notes for those of you who have read this entire book of a post and to let you all know healing does happen albeit the process seems so slow time has actually gone by rather quickly to this point.

I want to thank Tex (Wayne Persky) for allowing this post to stand on its own, and I truly hope it continues to help shed information well into the future

Hugs to you All…..until the next post
Erica

[Erica P-G]

It’s been over a year….dang time flies!

Have learned I can not chew a nut up enough to allow it to digest nor can I eat any solid dark chocolate…kinda bummed about that but as I’ve learned with LC you roll with the flow and move onto the next experiment. I still have not found any medical/homeopathic doctor who can help with Colitis without it including newly developed medications.

I feel like I need the help of a 12 step program with the added sponsor but for LC I don’t know how many times I veer off course “because I’m doing good so I must be able to eat whatever minus the gluten)” Can you tell I’ve recently done this!

Luckily if I just pay attention I can get myself back on track with simple Whole Foods again…but it sure would be helpful if I had someone bump me when I get a little cocky

I miss visiting at this site….life is busy….hugs to you All

This is still the best site with an awesome newsletter/blog to learn about Colitis healing

[tex]

Hi Erica,

Thanks for the update. It's great to see that you're still doing fine as long as you're careful. And I hope that trend continues.

All my best,

Tex

[Erica P-G]

Good to hear from you Tex

Thank you I float from doing so well and seeing Norman every once in a while to a stressful moment or lazy eating and the bathroom is my friend for a few hours. Luckily I can eat correctly and recognize when I need space to myself and I’m able to get back on track in a reasonable amount of time (couple of days). Throw proper sleep in there too!

I hope you are well these days since I don’t see many of the crew that posted a few years back I hope that means they are doing better as well

Hugs
Erica

[tex]

Thanks. I'm doing okay. I'm sure you're right about most people drifting away after they figure out how to control their symptoms by diet, and they get caught up in their routines and eventually stop coming back. And the world has more new distractions every day.

Hugs,

Tex

[PattyD]

I feel like I need the help of a 12 step program with the added sponsor but for LC I don’t know how many times I veer off course “because I’m doing good so I must be able to eat whatever minus the gluten)” Can you tell I’ve recently done this!

This is still the best site with an awesome newsletter/blog to learn about Colitis healing

HA! I'm the same way! Was doing good for a couple of months and got cocky/sloppy. And regress I did! LOL

I agree. Best site ever!

[dolson]

First off, I have learned to live with this crazy disease. Angry? Yes, at times- but I have more things to worry about than MC. I waited too long to take my cholestromyne powder. I mix it with a protein drink and sometimes it comes in chocolate. I am more concerned about my seizure disorder. Dr. Speckler, a neurologist thinks it's my Type I diabetes, and I agree. He's really smart and trained at Harvard and Yale. I like older doctors, not younger. I go to Charleston, SC, to see him. His wife is also a Type I diabetic and has food allergies. She has Celiac disease, not MC, so far.

I go to Augusta, GA, to get my Myobloc Injections and he's young. Young doctors don't know as much as older doctors, but that's my opinion and my neck is killing me. The gauge of the needle was not long enough and you're supposed to hurt when you get injections, and I felt no pain. He's about the only game I can go to because I cant ride for hours upon hours to see a doctor who injects with Myobloc for Spasmodic Torticollis. The pain level is 20 +!

I am sick of being sick!

I guess everybody hates my guts, but get in line, I'm used to it. Dorothy Rockwell Williams

[dolson]

Thanks Tex for your reply.

Charlene's husband and caretaker wanted recipes for his wife. Many of the stuff I can eat and it's delicious, from this book. I have to modify it because I am a diabetic. The book is called "The Healthy Gluten - Free Life, No Dairy, Soy, Eggs, and many recipes. Y'all and everybody should try this book and get some great recipes. I can eat chocolate - even dark chocolate, but ENJOY LIFE - which says there's no wheat, peanuts, tree nuts, dairy, casein, soy, egg, sesame, mustard, lupin, added sulfites, fish, shellfish and crustaceans. I made a cake with this chocolate but the gluten-free flour we used had gum. I don't like gum in my flour and my husband won't eat the cake. Oh well, we tried. If I can help, give me a holler.