How Will This Disease Affect My Life In The Long-Term?

[tex]

Hello Roe,

Welcome to the group. You seem to be on the right track. Some of us have had to stop all supplements, in order to get out of a flare. Resolving a flare like that can be extremely difficult, as you've already found. Doing all your own cooking from scratch, using only whole, safe foods may be necessary. IOW, no eating out, and no processed foods.

Hopefully, someone else will have some additional suggestions.

Tex

[Erica P-G]

HI Roe,

Lets start basic here...Magnesium Glycinate and VitD3 are your best friend as well as a basic safe food group of simple protein (most can tolerate wild game, lamb, turkey, season with sea salt) Yellow or Red potato (season with sea salt and or Earthbalance soy free spread), and if you do not react to rice Tikiyada Noodles are a decent carb filler during this time.

I have relied heavily on a Cornish hen bone broth noodle soup with carrots and celery season with sea salt for 3 years and now I have expanded it with a more deer or beef stew approach and can add rice crackers and corn bread GF or course.

I did not take any medication during my healing process....but it has been a timely little devil in healing process and has taken a strong 3 years of simple eating to finely get to a much much better place. I have also figured out that Histamine is a HUGE nemesis for me and probably one of my biggest issues before, during and now after healing, so I am on a low histamine diet newly begun due to recently finding all sorts of clues that histamine has been hard on me.

I hope some of this has been helpful. There is lots to decipher as each one of us is very different in how our bodies react to things.
Erica

[brandy]

Hi Roe,

I'd consider eliminating your oral supplements for 3-4 weeks--

in addition to daily B complex, also daily take a bone support which includes D3 [already have some osteoporosis], daily take cod liver oil, and a probiotic, and liquid turmeric.

This will feel very counter intuitive but when we have active D we are not absorbing them anyways.

After you get solid stool I'd add back either your B complex or your bone support first and see how you do for several weeks
and then add the other one.

Cod liver oil, probiotics and liquid turmeric could be preventing you from getting solid stool. Probiotics (again very
counter intuitive) are problematic for a lot of us. After you have solid stool I'd try turmeric (THE SPICE)
and sprinkle a little on your chicken or rice.

Generally when I am in a flare I have to eliminate all OTC supplements for awhile.

Budesonide--I responded to it in 2-3 days and was constipated in 2 weeks but some folks it takes significantly longer.

Welcome to the group, Brandy

[Ingrid]

I am 36 years old and diagnosed with LC 1 year ago. I am losing weight do not have waterry diarrea as bad just maybe 4 days during this year. What can I do? I am taking zinc, glutamina l carnosine Boswellia serrta and ox bile. With ox bile I can at least maintain my 43 kg of weight =( Do you tink that at some point I will recover?

[Texie Jane]

I was just diagnosed with CC yesterday. I ordered your book and it should be here tomorrow. Has anyone had this begin after taking a biologic? I had just begun treatment for Psoriatic Arthritis with Cosentyx and had one does of Lamisil when this began with a vengeance. This was 3 1/2 months ago and never got better. If not for Imodium, I could never leave the house! I began the Budesenide yesterday. I had stage colon cancer at age 37. This was many years ago and I have several AI disorders. Thank you for being here and helping one another. Texie Jane
By the way, why is there a Canadian flag on my name? I am a 6th generation Texan!

[tex]

Hi,

Welcome to the group. Many medications cause MC. Not much is known about an association with the use of biologics, because not many MC patients use them. Consequently not much research has been done regarding any association. I have to say I've seen at least one research article that claimed that biologics were well-tolerated by MC patients in the study, but that research was probably flawed.

I recall that a few years ago we had a few patients who were using a biologic (usually to treat psoriatic arthritis) who later developed MC. They were unable to resolve their MC symptoms (I couldn't convince them to stop using the biologic). Some of them even commented that their MC symptoms became much worse for a few days after their monthly injection of the biologic. I felt sorry for them, but we can't force anyone to use or stop using any medication. That's their decision.

The sad truth is, it appears to me that virtually all autoimmune diseases (including psoriatic arthritis) are due to food sensitivities that were caused by increased intestinal permeability (leaky gut). We have found that in case after case, once the food sensitivities are eliminated from the diet, the gut heals, the inflammation fades away, and virtually all autoimmune diseases disappear. So biologics are no longer needed (nor are any other medications needed).

Would you mind listing all the medications that you are taking? Certain medications have a really bad record of causing MC, and it's impossible for a patient to reach remission from MC as long as they are taking any of those medications.

Regarding the Canadian flag, if you don't select or upload an avatar, the system chooses one based on your posting IP address. I thought you were from Texas, when I saw your username. This is an old forum (it's been around for almost 15 years, now) and some IP addresses have been reassigned (from one country to another) since then, so sometimes the selections are not correct for certain IP addresses.

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

Tex

[dolson]

I am not a perfectionist. Never have been and never will be one. I am a middle of the road person. I live life "my way" and I have never sought after perfection. Trying to be perfect is down right boring. I like a well-made bed, clean clothes, and a dust free house. I have never been the jealous type like many of my girl friends are and were. I do get angry sometimes, but I am from the ole school of not to be heard from...only seen. It was that way when I grew up in Savannah. My brother was the same way. I guess you could say we had parents with no parenting skills. I understand it from my daddy's point. He was an only child but my mama from Portal, GA, came from a family of ten or more. I have millions of relatives on my mama's side but little on my daddy's side. I am okay with my life. I am a RN and have a BA in Journalism. I am now writing a book on my Grandy and the infamous or famous S-5 submarine. If it were not for Captain Savvy Cooke, I would not be here.

Sometimes, I do get depressed. Look at our country. It's in a mess with all the illegals. I have never seen our country in this kind of mess. I will not go into big cities. Craig and me went to Texas - to Buda and San Marco to see our old friends Sue and Steve. They are from Connecticut and they said it was dangerous to be in Austin. We got close and saw the homeless and beggars.There are jobs out there but nobody wants to work.

My D has come back. I don't know why. I am wearing Depends and taken nine packets of Cholestromine for the big D. I get sick of being sick. I talked to a neighbor and she told me that she forbids her daughter from marrying an Irish man. She said her daughter has five auto-immune disorders. I didn't ask her what type of auto-immune disorders she has because I didn't want to be intrusive.

I use to blame my problems on my 1/4 Irish background but my Nana, Dorothy Cassidy did not have diabetes. My general medicine doctor who specializes in diabetes told me you don't inherit Type I Diabetes but you do inherit Type 2. I think my seizure disorder is from my fluctuations in my blood sugar hi and lows.

I am not perfect and only one person was perfect and that's Jesus Christ the all mighty. I hope y'all don't hate me because I am not a bad person. I speak the truth and I believe in being honest. I'd love to hear from you from time to time. Thanks, Dorothy Rockwell

[tex]

Sorry for the confusion. When I said that "we tend to be perfectionists", that doesn't mean that all of us are perfectionists, it only means that most of us are. For anyone who wonders whether they might be a perfectionist, NPR offers a seven question quiz to answer the question, and it can be found at the following link.

https://www.npr.org/2023/01/25/11514144 ... ectionists

And you're right about Austin. I lived there from the early 1960s to about the early 1970s, and it was a pretty decent place back in those days. I wouldn't go there now — it has totally changed.

Tex

[smp]

Tex, can’t thank you and the great folks who share their wisdom, humor and thoughts on the MC forum enough! I am a very new newbie to this disease and I have learned more in beginning to read newsletters and posts than I have gained from speaking to doctors or reading info online from medical resources. As a matter of fact, I felt more confused (and distrustful with reading my own body) after taking budesonide and following advice to eat a Mediterranean diet and the resulting outcome which I know you all are very familiar with! I am learning to listen to my body, learning to understand this is a life changing event, look at changing my need for control and learning to embrace the new me ALL of which are thanks to you kind people! Much thanks and love, Susan

[tex]

Thanks Susan. We appreciate your feedback, and your insight. And we sincerely hope that you will be able to learn everything you need to be able to keep the disease under control for the rest of your life, hopefully without having to take any medications.

Anytime you have any questions, please feel free to ask.

We wish you the best on your journey back to health,

Tex