First year with MC

[jennifer]

Hello all,
I just wanted to give an update, as it has been one year since my diagnosis.

First thing I want to say is if I had not found this helpful, loving, caring and informative forum, I do not know what would have happened to me, I truly mean that, I was a desperate wreck!!

I want to personally acknowledge Tex, Gabes, Carolm, Marcia K, Brandy and Laine, for the endless support, encouragement and patience they have shown to me.
At times my questions were obsessive, repetitive and I’m sure annoying, but all of you have always shown great respect and tolerance.
With your guidance, each of you actually saved me from the nightmare that I was living.

A little background, I am a 60 yr old, retired ICU nurse, specializing in open heart surgery. I don’t have to tell you the level of stress that involved.
Prior to my MC diagnosis last September, I was healthy with zero medical issues and very active. I walked 6 miles every morning.
We traveled a lot, we took an annual ‘'family vacation” ever since my 3 kids were young, to destinations all over the world.
I am or should I say WAS an over thinker, over achiever, mover and a shaker and a go getter.

When I received the diagnosis I had never heard of MC.
My once active life suddenly came to a screeching halt, I was lost, confused and frightened.
My GI doctor said “it isn't a serious illness, it just puts you at risk for chronic diarrhea.”
He prescribed Uceris and told me to eat whatever I wanted......I didn’t take the drug!

I am 5 ft. 2 in. and weighed 113lbs. I went down to 99lbs....terrifying!
I could not look at myself in the mirror, it was too upsetting, I was shocked at what I saw.
It hurt to take a bath because my bones were just pressing on the porcelain tub.
Trying to sleep was a nightmare as I couldn’t get comfortable, it hurt when laying on bones.
It even hurt to wear a bra because the wire was poking at me.

I suffered severe/brutal nausea, to the point that I was chained to the house, unable to eat or function........this went on for months.
I had diarrhea, brain fog, fatigue, hair loss, burning mouth, lips and tongue, weird veins popping out on my lips, insomnia, oral thrush, nasal congestion and anxiety.
I NEVER had any of these symptoms prior to MC, it was like an avalanche of issues, all hitting at once. I didn’t know which fire to put out first.

I kept reading on here that “YOU WILL GET YOUR LIFE BACK” but I didn’t believe it. I was too sick and not in a very good state mentally. I kept reading, praying and hoping that one day I could achieve remission like the success stories I would read about. I would fantasize about being “normal“ again.

On the advise of this forum, I started vit D ,magnesium lotion, and went gluten, dairy, egg and sugar free (enterolab for soy was 6, overall antigen score was 9) most of these symptoms disappeared within 2 weeks.
The diarrhea was gone in one week and replaced with a soft mushy bm, once every am.
It took a long 10 months on a super strict diet to reach a perfectly formed, #4 on bristol scale, bm.
I have never taken any meds to treat MC, diet alone was the key for me.

The only 2 things that still remain are the nausea and chronic nasal congestion.

- Chronic nasal congestion- Never had a problem prior to MC. I have seen two ENT’s and they both say ‘'non- allergic rhinitis.” An allergist did 79 skin pricks for food and environmental and I didn’t react to anything.
Its not bad, just annoying, as I don’t know why I have this? I just use nasal saline spray, as needed.
My fear is another ear infection and the antibiotics for that is what caused this whole fiasco in the first place.

- Nausea- my biggest issue since diagnosis!!!. It isn't as bad as it was, its random, there is no rhyme or reason when it comes.
I can not pinpoint a trigger. It isn’t everyday anymore, it could be weeks/months and then it hits?? It is mild and come in waves. I have no idea what causes this?
One GI thinks its due to a large 13 mm gallstone and wants me to see a surgeon to have my gallbladder removed.
Another GI said no, its not the large stones that give problems, it’s the smaller ones that get stuck in the ducts. HIDA scan, ERCP and MRCP all negative.
A third GI does not think it’s the gallbladder and thinks possibly silent gerd??
So, if I could solve this year long mystery of why and where the nausea is coming from, that would be my one missing puzzle piece!

I have stayed on this diet for a one solid year!!! Every single day I have eaten these same foods. I eat 5 times a day, like every 2-3 hours.

turkey breast
chicken
grass fed ground beef
ground lamb
white rice
red potatoe
overcooked string beans
overcooked carrots
one banana with two tablespoons of peanut butter
coconut oil
water

I have never cheated nor would i think of cheating, it isn’t worth risking a set back when I have worked so hard and given up so much!
I was determined to get my life back.
At this point I know i am way overdue and I should be introducing new foods, just wish I weren’t so nervous to put anything new in my mouth.


Today, one year later:

1. I have gained 7 of the 14 lbs. back, I weigh 106.... I will get there!
2. I am sleeping so much better now.
3. Brain fog is lifting and I am more focused.
4. My energy is starting to return.
5, I have started walking again, up to 2 miles every am....I will get there!
6. I have normal #4 bowel movements every other day, exactly how I was pre MC.
7. I only take vit D and topical magnesium, no meds.
8. I will never eat gluten again, do I miss it? Sometimes,when I see a birthday cake at a family gathering, but I just remember how miserable life was last year and that craving quickly diminshes.
9. It’s a pain in the @$% to pack meals everywhere I go, but at least I am able to get out there and participate again.
10. I haven’t traveled, those annual family trips have been put on hold for 2 years, thanks to Covid, but I hope I will be ready to attempt it, when the time comes,
11. Most importantly, I HAVE MY LIFE BACK, I never ever thought that would be possible. I am a functioning mom and wife again. ITS NOT THE SAME LIFE, but I am happier, healthier, stronger, calmer and kinder.


To anyone newly diagnosed reading, this is what I have learned from this forum:

1.“shift down a gear or two” “take a deep breath” “its progress not perfection” “healing does not happen overnight”
2. the importance of vit D and magnesium to your recovery
3. religiously sticking to a safe bland diet,
4. don’t obsess about gaining weight, it will eventually happen
5. don’t sweat the small stuff, stress is a major trigger that is sometimes overlooked......find prayer, meditation, a hobby, light exercise or spend time outdoors.
6. as Tex would say ‘'FOOD IS OUR MEDICINE” don’t let it bother you when family/friends say “oh a little wont hurt” or “when are you going to be able to eat normal food again?” or “don’t you get sick of eating the same thing every single day?”
7. listen too and follow the advise of the knowledgeable and compassionate people on this board, they have been where you are and know exactly how you feel, they literally saved my life!!!
8. it’s a long, discouraging and frustrating journey, trying to sort everything out....’'its one step forward two steps backward”......but if you are motivated and determined, you will find the strength ..........YOU CAN GET YOUR LIFE BACK!!

Many thanks and much appreciation to everyone on this board, who carried me through my first year with MC.
Jen

P.S. besides food (I have been waiting a solid year to try Sheila’s Paleo Muffins) just too chicken to pull the trigger on new foods. Should I be adding anything else? b vitamins? zinc? etc

P.S.S. my new motto is ACCEPT WHAT IS, LET GO OF WHAT WAS, HAVE FAITH IN WHAT WILL BE

[jbrohlr]

Jen, I found your story pretty heartening. I have not had symptoms nearly as severe as yours (mostly D and alarming weight loss/emaciation). I did not get rid of the watery D as quickly as you since I had several setbacks (course of antibiotics to see if I had a viral infection, thinking certain foods were safe when they weren't, etc.).

I have a few questions I'd like to ask you.

You believe that your ordeal started with a course of antibiotics, I think I kicked myself into an MC flare with aspirin (which I was taking for my sinus pain/stuffiness). However, do you look back and think the autoimmune problem (that caused the MC) was starting to manifest itself earlier? In hind sight I think there were clues that my MC flare was several months in the making, maybe even over a year, and the NSAID just got me over the top.

I have been averaging one mushy stool a day, but it is erratic. Some days I'll go twice, some days not at all. Possibly your experience as well, or were you pretty consistent.

Did you have any problems that did not show up till later into your recovery? I have had the D at bay for a while now and at the least have stopped losing weight, but lately have been anemic (my limbs, lower back and hips feel like they are made of jello). I am taking Vitamin D3 and soaking my feet in Epsom salts (topical Mg on order) hoping I am still going in the right direction and this is just a "this too shall pass" situation.

Also, did you plateau in your recovery every once in a while? That the symptoms would stay the same for a few weeks without any noticeable improvement? Other than the soft stool that is - sounds like that stayed the same for several months.

I agree with you - this site is a God send. If not for Mr. Persky and the moderators on this site I would still be eating eggs and questioning the value of my life. (the dairy got to be an obvious cause on its own, after a while).

Good luck Jen, I hope I have the same tale to tell as you in a few months.

John R.

[jennifer]

Hi John R,

I am 100% certain, the antibiotics initiated the MC.
The GI said i probably was predisposed and the antibiotic triggered it,

I have no doubt the use of Nsaids contributed to your diagnosis.

I went to the primary because my ears were popping and couldn't hear well.
She said i had bilateral otitis media and prescribed Clarithromycin.
Two days into the treatment the watery D began and didnt stop until 7 weeks later when i joined this site and was advised to make the diet changes.

Within a week on the bland diet, a mushy stool had formed, the kind that disinegrates when you flush.
For me, it was consistant.... one mushy stool every am.

Looking back, there were no signs prior to the antibiotics, I was healthier than an ox with no medical conditions.

The side effects for me were right at the beginning and hit all at once, gradually they started to disappear, as my body was healing and i was able to absorb nutrients again

Did i plateau? I thought i would never reach remission, I wanted to give up so many times. Like you i was always questioning the valyue of my life. Then i would think of my kids and my husband and pull myself together. It took a long time before i saw signs of my old self re-appear. About 10 months in, i knew Jen was coming back to life.

I dont know what diet you are on, but the stage one eating plan made the difference for me.
Did you get the Enterolab? or Tex's book?

Hang in there John, you have to be very patient and motivated, it takes a long time, but you will get there!

Jen

[HockeyMom]

Glad to know you felt my input was helpful

Laine

[jbrohlr]

Thanks for replying Jen.

I think I am applying the stage one diet correctly:

beef, lamb, pork
sweet potatoes, long grain white rice (till this week)
bananas
water, watered down coffee

I've adhered to this diet for at least 4 weeks. Eliminated gluten and dairy earlier then that but I lost track of when. I don't seem to react to beef like several others do, and I quit rice last week because it was causing lots of gas, which made me suspicious. The gas has reduced but is still there so maybe the beef? Maybe there is just going to be gas till I am in remission?

I have been taking vitamin D3 (Dr's Best, 5000 iu) for 2 weeks and Epsom salt foot soaks for a week. I doubt that is long enough to have any benefits yet.

And I have improved, superficially anyway. The WD ceased a little over 4 weeks ago and the frequent stools a week after that. Now it is just mushy stool that disintegrates when flushing (averaging once a day).

Another question Jen; did your weight loss continue for a while once the D let up? I thought my weight loss had stopped but maybe it has just slowed down. I am assuming (hoping) the the weight loss and the muscle weakness that has shown up the last few days is a result of the malabsorption that comes with MC and will turn around when my digestion improves.

Yes, I did get Mr. Persky's book "Microscopic Colitis" and am starting to read it a second time - lots of info in that book that takes some effort on my part to retain. I have not gone the Enterolab route yet but now I'm thinking that I should due to the weight loss(?) and muscle weakness.

The timeline of your experience gives me hope that I may be on the right track and just need to be patient now. However, the nature of this illness and the momentum of it's symptoms always has me questioning whether I am on the right track and that the cessation of D is not always a solid indicator of improvement. This flare started in early June 2021 and I did not buckle down with the diet until 4 or 5 weeks ago so I should not expect to be much better if I go by the other experiences posted on this site but still - nagging doubts.

John R.

[tex]

John,

Note that for me, and I believe for most of us who are sensitive to beef, beef causes gas and bloating, but not diarrhea (at least not for most of us). For me, it will cause bloating after a Few hours or so, and the next day I will usually have a pain between my shoulders in my back, and a headache. Otherwise, I've noticed no other symptoms. But as long as I never eat beef, I never have those symptoms, either.

I hope this helps.

Tex

[tex]

Hi Jen,

Reading your post was very gratifying. You've given us some great insight into the perseverance necessary for resolving difficult cases. And of course this will be quite inspiring for others who are having a difficult time reaching remission. Accordingly, I'm adding a copy of this thread to the "Member Success Stories" section.

Thank you sincerely, for taking the time to write this inspiring update.

I hope your remission is enduring.

Tex

[jennifer]

Thank you, Tex, that really means alot to me!

John R, i sent you a private message

Jen

[Evieb]

Hi Jen! Thank you so much for posting. This platform and Wayne’s book have helped me enormously. I was so lost. I was diagnosed 10 months ago. The doctor told me not to eat gluten or dairy and if I wasn’t better in two weeks he had meds for me. I wasn’t better in two weeks but after reading whatever I could find about MC I didn’t want to take the meds. But no diet worked completely. It’s been months and now I found the wonderful, forthcoming people on this site and Tex and the great Board Members. I think I am in remission. I keep eliminating ingredients in things I buy that aren’t on my all clear list and am eating a diet very similar to yours. I’m being very cautious.
I am older than you, 77, and I exercise at home now because of Covid and in good health but I too have lost weight. When I got the diagnosis I weighed 103,and I’m 5’ tall. (Short.)Two weeks ago I was 94. I really got scared. My family and good friends kept telling me to gain weight, take a steroid, eat ice cream, “you know,” they’d advise , “there is dairy free ice cream!” I know they all mean we’ll . I have been doing research for months and know much about what there is but only after reading Tex’ book and finding this site have I started to gain weight and feel like I can leave my house comfortably. This morning I weighed in at 97.5. I have an October appointment to see a GI , different from the doctor that did the colonoscopy.
I wanted to thank you and John for posting. You gave me this old gal the courage and incentive to post today. I went to Whole Foods and bought some things to expand my diet. Baby steps. Sorry for rambling. Evie

[jennifer]

Hi Evie,

Thank you for the kind words.

For me, the weight gain took several months,

I had to stop obsessing about it and sure enough, the weight gradually started to creep back on.

You have gained 3 lbs so you must be moving in the right direction.

Hang in there Evie, you can do this!!

Jen

[Evieb]

Thank you Jen!
Today for ever such a long time I had a normal bm. If it weren’t for this forum I never would have told that to a stranger but the truth is we are really all familiar with each other.
I will continue my diet and add slowly. Considering what difficult times we are all living through, it feels great to be happy today. I’m a retired teacher and I just can’t imagine working with this condition. Brava, bravo to all of you out there working and raising children and being care givers!
Thanks again , Jen. Evie

[AES]

Hi - Can someone tell me how often/long to soak my feet in epsom salts? Also, any more info on the topical magnesium would be appreciated. I found a product on Amazon, but I am not sure if it is any good.
https://www.amazon.com/dp/B06XXP8YRL/?c ... _lig_dp_it

Thanks!

[jennifer]

Hi Anita, Yes, Ancient Minerals is a good magnesium lotion.
I sent you a private message.
JEN