Explosive diarrhea limiting my social life

[Watercolorist]

This is a two-part request for help.

My close friends know I have MC. Although they do not know exactly what MC is or how life altering it can become. They also don’t know that I do a LOT of laundry. My gut can react within minutes of even drinking room temp water or hours or days after eating an unknown cause. They also have been told I turn down social activities, not because I have no interest, but because my situation limits my options. Many of the events include day trips, which I always turn down due of limitations imposed on me by the unpredictability of my MC challenges. They don't know or understand this means the high probability of very urgent, explosive diarrhea. Gross, (TMI) too much info to share with them.

To make matters more complicated, one member of the group told the entire group, in my presence, she too has MC and it is no big deal. She is a really lovely person, but her experience tells me she is in the early stage of MC. It used to be no big deal for me either.

I was told by my closest friend that of I keep turning invitations down all of the time, human nature is that people will stop inviting me. So sad, but probably so true. I have even asked me to keep inviting me understanding that I may need to routinely decline I explained I decline as a matter of need, not as a matter of no interest.

I am @ the end of my first month on Budesonide plus I am taking Creon.

Any comments please?

Part 2 of this request is that I have taken the EnteroLab A1 and C1 panel of tests. But I react also to a lot of fruits and veggies, not shown on the results. even when cooked to the soft stage. Maybe I need to take additional tests? Any comments. I may need to call the lab and ask, or maybe members can give me their opinion.

I look forward to, and am grateful for, your comments.

Jeanne

[Gabes-Apg]

Jeanne

while the body is super sensitive, socialising can be difficult

some ways to still socialise but minimise explosive diarrhoea

- eat before you go and minimise intake whilst out
- if at someones house, take your safe meal with you to eat with others
- in the lead up to day trips, eat blandest safest meals for a few days

For both questions
Have you adjusted your diet to suggestions in the guidelines to recovery?
https://www.perskyfarms.com/phpBB/viewforum.php?f=79

are you taking Vit D3 and magnesium to help reduce inflammation?

the best way to define your safe eating plan is to start on bland basics minimal ingredients, and when you have reduced symptoms (semi stability) try small amounts of ingredients

hope this helps

[Watercolorist]

Thank you, Gabes

I love your posts on this site and always find gems of experience and wisdom in them.
The answer to most of your questions is yes. I have learned so much from this site but I do need to frequently revisit topics until I practice the suggestions often enough that they simply become part of who am and and how I routinely live.

My diet, prepared by me is bland, but I actually enjoy the taste of the food this way

I know I cannot eat for a few hours before going anywhere. But I never thought about planning for and eating really bland foods a few days before a day trip. That should help for certain as I never know if I am reacting to something eaten in the most recent meal or something eaten within the past few days. Thank you!!! I am trying to be more consistent in journaling so I will learn about how MC affects me.

One thing I forgot to ask, any suggestions for managing extreme fatigue or exhaustion, especially if I desire to be out for a day trip? Being well hydrated is probably one thing. But anything else?

Thank you.
Jeanne

[tex]

Hello Jeanne,

Gabes appears to have covered almost everything of concern, but I might add that I get the impression that you may need to alter your diet, if you hope to get to remission. Most of us can't handle any significant amount of fruit (with the exception of bananas) while we're recovering, because we can't handle the fiber, nor the sugar. And none of us are able to eat certain vegetables, while recovering, because they have way too much fiber, or oxalates, or they cause the generation of gas, or some other problem.

You should have been in remission after a couple of weeks of taking budesonide, and certainly after a month, if it's going to work for you at all. Either, it's not very effective, in your case, or something in your diet is overpowering its ability to suppress the inflammation.

I would suggest that you limit your vegetable choices to carrots, squash, green beans, and depending on your EenteroLab results, either potatoes or sweet potatoes. I would avoid fruits (again, except for bananas) until I was in remission. Some of us are able to reach remission without being quite as strict as others, but most of us have to really be careful with our diet, if we hope to ever recover. And if you're eating any commercially processed foods, look at their ingredient lists very, very carefully, because most of us can't handle them during recovery, due to the fact they contain too many ingredients, or traces of something that we can't tolerate. And if you eat any meals away from home, please be aware that research shows that over 50% of all restaurant meals are cross contaminated with gluten, despite their claims to the contrary.

And I totally agree with your evaluation of your friends situation with MC. When I first developed the disease, it was no big deal, either (and this lasted for maybe a year or two), just a little diarrhea each day. But when the disease finally got down to business, I was forced to make some serious efforts to control the disease, because there was no way that I could continue living that way. I'm pretty sure that as time goes by, your friend's opinion of MC will change drastically, unless she happens to be mighty lucky.

Also, I note that one of the side effects of Creon is diarrhea.This might be the main cause of your problems.

I hope this help.

Tex

[Gabes-Apg]

fatigue and exhaustion are side effects of inflammation
it is indicator that you are ingesting items that are causing major inflammation

the low inflammation eating plan and Vit D3 and magnesium with some healing the fatigue and exhaustion fade

Another aspect - while you are healing the body will need good quality rest.


A key part of my MC management plan for the past 12 + years is that I budget for treats / situations

if travelling away for weekend, or attending social event like a wedding etc (that I can not take my own food) or stressful situation (family gathering etc) I prepare for this the week prior, eating my blandest meals, getting additional rest, doing more relaxation (such as meditation/yoga etc) and increase the Vit D3 and magnesium slightly

if going out for the day I will pack 'gabe safe snacks' and have large gabe safe breakfast and find I dont have to eat as much during the day.

so far as what is causing reaction and reaction time.
when I was inflamed and early stages of healing, my reactions were within hours of having trigger food
with time and healing, the reaction time ranged between 12 and 18 hours

another thought - do not overthink what others think about your reduced social aspects etc.
I found that true friends understood about my eating plan and why I do it. it is part of the acceptance (mental and emotional aspects) of life with MC. If you are at peace /confident with what your eating plan is and what your physical limits are they generally will not discuss it / question it.

People dont question/judge diabetics or alcoholics that give up alcohol or smokers that give up smoking
If they do, they are not worthy of your time and energy!!

[Watercolorist]

WOW! Tex and Gabes. I eat what is normally considered a very healthy diet....just not for me, or me with MC. I rarely if ever eat processed foods learning a decade plus ago these were not healthy. And I have not eaten the most common allergens in recent times, except for the eggs provided me from my daughter's free range, organic chickens eggs until I realized I react to both the egg white and the yolk.

I reread the What to Eat Guidelines for which Gabes provided a link, and read both Gabes and Tex's posts with their insight and suggestions. Rather than state the areas where I need improvement, let me simply say the input from both Tex and Gabes were right on. I don't eat processed foods, but the fruit (raw) and many of the veggies, even though cooked, are not appropriate for me now or maybe ever. And the mention of oxalates rings a bell. I will follow up to see what in my diet is potentially high in oxalates. Fruits and veggies, and formerly legumes, had been my preferred foods and have been for a long while, and except for the diarrhea, I "felt" my most energetic bests self then. I learned recently I absolutely need to incorporate much more of the correct and allowed animal proteins for many reasons. My protein intake has typically been quite low.

Interesting though, my EnteroLab scores showed I was reactive to 4 common animal proteins and 3 common nuts. So getting adequate protein will require some major adjustments for me, including protein sources I have never consumed. My Mean Value on the EnteroLab test for the A1 and C1 panel(s) was 37 units when the stated normal range is less then 10 units. All foods that showed there was immunological reactivity were in the 2+ and 3+ categories.

Question: When peeled squash is shown as safe, does this mean both summer and winter squashes? E.g., zucchini, summer, butternut, acorn, etc? The fiber and/or seeds varies, of course. Or, simply listen to my body?

CREON...thanks Tex. I read that before deciding to take it, but erroneously told myself the potential benefit of taking it outweighed the diarrhea.
Wrong. Is there one particular enzyme in CREON that causes the diarrhea? I am working with a fantastic, very dedicated, well respected dietitian who loves her work and is highly committed to the people she serves. She had/has me on various high quality supplement brands specifically with the aim of solving my GI challenges, including very low pancreatic enzymes and adjusting which ones and the quantities as she/we strive to heal my gut. After testing and learning that my digestive enzymes were alarmingly low, I was put on digestive enzymes (not CREON). CREON was recommended by my GI doc. I agreed to taking CREON, while removing some of the digestive enzymes my dietitian has me taking. I agreed to taking CREON with reservations hoping it would be one piece of the potential solution.

Budesonide... After reading your comments, Tex, I think in all probability the fact that I am not in or closer to remission after taking Budesonide for almost a month is linked to a need to further "clean up" my diet for MC. And, once my diet is further corrected, maybe I won't need the Budesonide. My rationale, correctly or incorrectly, for taking the Budesonide was I thought it would address the existing inflammation from an Rx perspective while I further refined my diet. I had tried Budesonide in the past 4 years on two previous occasions the most recent time being two years ago. One time it worked; one time it did not. But in neither of the previous times did I know of this website and maintain an appropriate MC diet. I elected to take it once again with serious reservations because my feeling was/is that the Budesonide would address a symptom not the cause. If I am correct, I am learning from this website, I can address the cause which will address the inflammation. Fantastic! As a side, since being on the Budesonide, the frequency of my diarrhea has diminished significantly! And, I sleep through most nights without concern for nocturnal diarrhea. And the stools are no longer watery. They are now mushy or mushy with some form. Maybe a level 5 or 6 rather than a level 7.

In addition to CREON, @ least one of my Rx may be or is a diarrhea contributor. A very low dose statin! Strongly recommended by various cardiologists over the past decade. I have opinions about their recommendation; but I don't need to discuss those opinions here. There may be other Rx, all heart related) that cause diarrhea. I will have to check. Some of the heart related Rx may be able to be eliminated if I exercised safely and and with greater frequency.

Thank you both, Tex and Gabes. I deeply apologize for my long response(s). It is my desire and hope they will be far shorter as I/we move forward.

[Gabes-Apg]

no apologies needed for long response

you are doing a major 'reset' at the moment
there is a bit to process as you wade through all the information and figure out what is going to work for you

over the living with MC journey many of us have had to reassess and change. what works now may not work in 8 years time

[tex]

In order to get this disease into remission, we have to forget about nutrition and balanced diets and all that. After we get the disease into remission, then we can begin to fine-tune our diet. It's futile to try to maintain good nutrition, anyway, as long as we are reacting, because most of those nutrients are going into the toilet, no matter how great our diet appears to be. As Gabe's pointed out, after we heal, we'll begin to absorb nutrients normally, again, and we'll be able to regain some or all of our lost weight. Most of us now eat a much healthier diet than we did before we developed MC.

All of us have enzyme deficiencies (including a deficiency of pancreatic enzymes, for most of us) while we're reacting, because those organs are also inflamed. Consequently, our body's organs cannot produce normal amounts of digestive enzymes because of all the inflammation. Once the inflammation subsides, we'll be able to regain our enzyme production capabilities, including the production of those important pancreatic enzymes. Nutritionists, dietitians, and naturopaths try to treat MC by flooding us with enzymes. That won't control the disease, and it provides very little help, while raising the risk of just making things worse. Were better off, in most cases, without all that stuff, because without it, we can usually reach remission much faster, and resolve any need for those digestive enzymes. As Gabe pointed out, vitamin D and magnesium supplements are important, because they help healing. Virtually all of the other supplements typically do not help us to recover.

I take averstatin, because I had a stroke about five years ago, and it seems to cause no problems. I did have problems previously, with simvastatin, because it tended to lock my finger joints while I was sleeping. Apparently it is possible that a statin might be affecting your MC. The medical research is somewhat contradictory on that, so the jury's still out.

If you're not having watery diarrhea, the budesonide may be helping, so you might want to continue with it for another week or so while you get your diet in order, and when you begin to taper the dose, be sure to taper it very slowly, in order to prevent a rebound effect that often causes a relapse.

Tex

[Watercolorist]

Thank you Tex and Gabes

I am becoming so much more aware of MC ‘s impact to my body and the need for acceptance of this condition, living within the parameters this condition defines, and, in the process, of being guided by a vastly different path to healing then I had previously considered or known. I previously believed it was nutrition, nutrition, nutrition plus avoiding known triggers which I am learning more about through testing, comments from each of you and experience.


My intuitive promptings yesterday nudged me into the idea of cutting back on the numerous supplements (probiotics, enzymes, etc, etc.). Then to read input from both of you reinforced this direction. Whew!!! That should simplify life and save a few dollars in the process. Actually, it is a very “freeing” feeling not to have to be tied to stocking and taking so many supplements.. Simply focusing on what is known to work will be beneficial in numerous ways.

I so much wanted to “heal” and was always seeking solutions not realizing solutions to the healing process lie in my learning about how MC affects me and being highly committed to what I am learning through the two of you and what is available on this website.

Saying “thank you” in no way can express how grateful I am for both of you and what I am learning.

But “thank you” is the best I can do

[Gabes-Apg]

You are doing grand!

you have just acknowledged a key part of the healing journey! keep it simple and it comes from within.

along with diet and lifestyle, the mental and emotional aspects are just as important.

so pleased you have the freeing feeling in all that you have processed this past couple of days.

take care

[jbrohlr]

I was hoping the fatigue (minus the WD) was caused by the energy lost from the intestines healing (or trying to, anyway). Also perhaps by the loss of magnesium.

My fatigue did not start till about 3 months after my D appeared and about a month after the diet got the D under control.

And it was monumental. I could just be sitting in my chair watching TV on the weekend and all of a sudden I would feel like I was just a sack of jelly and chicken bones. Came in waves as well, it was not consistent. Now it shows up between 1:00PM and 4:00PM most days, and sometimes in the evening if I exert myself too much during the day. It is not a severe as it was either.

John R.

[Watercolorist]

Tex and Gabes,

With your guidance, and Tex’s books, plus the results of my EnteroLab A1 and C1 tests, and strict adherence to dietary guidelines and restrictions, I have made tremendous progress. What a game changer!!!!! No more urgent watery D. No urgency now, and more control, with stools now consistently being a level 5 or maybe a level 6 on Bristol Stool Scale.

As I mentioned in a previous post, @ the start of my seriously committing to this healing journey, and thinking perhaps Budesonide may be one additional component to assist in healing the long-standing inflammation, 28 days ago I began taking 9 mg daily for just short of 28 days. On day 26, I reduced my dose from 9 mg to 6 mg and will continue at this dosage for approximately another 28 days +or - until I reduce the dosage to 3 mg a day with a gradual taper to none.

I realize from what I have read on this forum, the taper off of Budesonide must be slow in order to avoid the possibility of, or a return to the watery diarrhea stage. My questions below are being asked seeking guidance from what you may have experienced or learned over the years from other forum member’s experiences with successfully tapering and ultimately quitting the Budesonide.

What are your recommendations, Tex, or Games, regarding how I should implement a long tapering off period? Do I begin the taper before I reach the end of my 28-day period on 6 mg so as to have more capsules left for the tapering using only 3 mg a day? And how do you recommend spacing the taper on the 3 mg?

I am doing do much better, I want to do everything I can to continually move forward. I accept the fact there may be temporary setbacks on the road ahead. With an emphasis on temporary and not 23 more years of urgent WD.

Thank you Tex and Gabes for devoting your time and energy to being a guiding light for me and so many others. And thank, Tex, for your books, and for this website and forum.

Jeanne

[Gabes-Apg]

That is great news and so pleased you have had quick results to the changes you have made

The start and process of taper should be based on 'listen to your body'
once there is indicators of consitpation/harder stools, start to taper

Using the search function. - I used the word taper to find some previous discussions
(I have never used steroids so am unable to speak from experience)
best option is to grab a cuppa (or glass of water) sit down and do some reading on others experiences

from that search here are previous discussions that may help
https://www.perskyfarms.com/phpBB/viewt ... ilit=taper
https://www.perskyfarms.com/phpBB/viewt ... ilit=taper
https://www.perskyfarms.com/phpBB/viewt ... ilit=taper