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hoosier1
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Paging Gabes, Tex, Joe, Polly, and all

Post by hoosier1 »

Hello Gabes (and All),

I read a semi recent post of yours about having "constipated D". And that your MC has changed from D to C.

I want to describe the progression of what is going on with me to you to see if it sounds similar?

Over the past year or so, I have noticed that I need to strain more when going to the bathroom (obviously avoiding to do so where possible). I still have multiple AM bathroom visits in a row and in most cases, flat/narrow movements. And mid way through a bowel movement, it feels like the door simply shuts.

I had a defocograpgy and other lower end tests less than a year ago at the Cleveland Clinic that shows I have a moderate descending perineum. Some doctors and physios think that could be my problem, and some don't. I have tried some physical therapy for this to no avail. I have also tried the squat position you mentioned. No sure it helps. And BTW, my last colonoscopy was about 1.5 years ago and they DID NOT take biopsies. Idiot doctor, so I am not sure of the state of my MC pathologically.

So I am wondering if my LC is now more CC (isn't that the progression), and that my colon/rectal areas are now more damaged and fibrotic and simply don't work like they used to. I know a CT scan from years ago showed both thickened bowel wall and pelvic congestion. I am also wondering if I have some sort of weakening in my cool/rectal area (Intussusception). I do have a hemorroidal condition on the right side that I can feel after a BM. Doctors are telling me to leave that alone. Cleveland Clinic says they can do a less invasive procedure that ties of, and snugs up, the veins down there. I was scheduled to do that last year but chickened out in the event it made me worse, and more difficult to have a BM.

Since it is near the end of the year and my travel requirements drop off for a couple weeks (so tired), I am self prescribing prednisone to jump start a healing process (if that is what I need… who knows), and taking 1 tsp of Citrucel in the morning, and adding 400mg Magnesium supplement to keep things on the looser side and moving better if possible. I can still get watery D every once it a while, like a blow out from the past :) But normally, I just have thin, pasty, seemingly now harder to expel bowel movements. I usually feel like I have to go too.

I have a new Dr. friend who is ordering a CT scan for me for monday, and though he is not a GI doc, is kind enough to pull in any and all other doctor friends he knows to rebaseline me. Finally, a doctor who will spend time with me and, who will listen to me! Hope he is the miracle I have been looking for… But, I am also realistic, or more pessimistic.

Admittedly, I have not be religious on GF, DF… And I am embarrassed to admit this on this forum. I just feel like for me, it is an impossible goal to go 100% GF, DF so long as I am still working the way I am. I know, I know… not a good way to behave. My new years resolution perhaps. I have been active and have been doing the 10,000 steps per day program since June. Moving around is just good for everything but even that gets tough when winter sets in and you feel icky. Still doing it though. Got an email from Fitbit, the pedometer I use, that said I just walked the equivalent of the state of California.

So that is my current state of affairs. Any advice from any and all of you is very appreciated. I feel like a chemistry and physio design of experiments in that I have seemingly tried so many things and have progressively changed, and worsened I think. Going from D to "Constipated D" or to flat, pasty, hard to expel stools is equally frustrating. And here is something very odd, and I just noticed it again as I reread this email for typos before I sent it. I am becoming dyslexic. Not sure where the mind fog is coming from but I leave entire words out of sentences, spell words wrong when I know how to spell them, etc. I am less concerned about this and chalk it up to getting older. So if any sentences don't make sense, you will understand why.
"It's not what I believe. It's what I can prove." - A Few Good Men
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Post by Gabes-Apg »

Great to hear from you, but sorry you are having these issues.

I have just spent 3 weeks in excruciating pain due to anal fissures, so timing wise you must have ESP. This year my bm's are C, or mc mud. Not completely emptying has been an issue for a few months.

A few points /questions

Can't comment on the LC to CC status, I don't believe that is the case.
Regardless of what you call it, the narrow bm's prove there is inflammation.

Prednisone, does not heal the inflammation....
The best way to heal is, minimise triggers, food, stress etc,
And make your eating/drinking plan low inflammation, mega healing.

To help with the passing bm issues, you need to increase motility, increase the water content, without bulking the motion (narrow motions will minimise hemoroid/anal fissure occurring)
I use,
Paraffin
Peeled apple, (pectin is anti inflammatory)
Watered down pear juice ( same, pear is anti inflammatory)
Chinese herb tablet that helps motility
Slippery elm... Helps to coat the gut, minimise damage.
Lots of water - especially as it is humid summer here in aus

When on the loo, Use a stool to elevate the legs,
Breathing, relaxation to assist with complete emptying.
Apply some coconut oil to anus prior to passing motions.


Hope the ct scan gives some insight.

Eye issues can be inflammation/fatigue/thyroid related. Have you had them checked in the past 6months?? Highly recommend it.
2-3 months ago I had a rapid decline in sight, need glasses to read texts on my mobile...

I saw the GI about my stuff last week, she wanted me to do a rapid cleanse out (ie 3 days with chronic D) for her to do a colonoscopy and fully assess what is happening,
Financially, physically, and emotionally I was not in the best place to embark on this mission.
For now it is, salt baths, creams, and keep the motion moving, and narrow.

In 29 hrs, I will attend a meeting, get a letter and find out if I am one of the lucky 40% of People at my workplace that will keep their job. We have known about this for 6 weeks or so. I thought I was coping ok with this, given these issues, maybe not.

The GI, and my doctor agreed that while I am unsettled, any procedure will struggle to heal.
So best to wait to the new year

For background, my mother had crohns and now has stoma, as she lost all structure in the last 8cm
I have had mild pelvic floor issues for 20 years
I was born with no ligaments holding the large intestine in place
The likely hood of structural issues after 6 years of D and C is high.

Hope this helps...

I do think your body is saying 'things have to change'
The stress, and your eating plan is causing you issues, and very likely some damage that may not be readily healed.
Wow, on your activity levels, at the end of the day are you able to settle and calm the mind?
IMO I don't think prednisone is the best option...

Take care
Gabes Ryan

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Post by Gabes-Apg »

Meant to ask, have you had your d, b12, b9 folate, and iron levels checked?
Gabes Ryan

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Post by tex »

Hi Rich,

I'm sorry to hear of the continuing/evolving problems. Gabes did such a great job of addressing your issues that I really can't think of anything beneficial to add. She appears to be right on target — meds do not actually promote healing, they merely put the symptoms on hold for the duration of the treatment. Only diet changes (along with rigid compliance) will bring healing, IMO.

And based on our accumulated experience here on the board, "teasing" the immune system (by following a policy of limited compliance to the diet, or intermittent compliance to the diet) only seems to heighten immune system sensitivity, unfortunately. At least that's true for the short term. I have no way of knowing what the long-term effect would be, but presumably it should be the same.

While more testing may provide more information, it's impossible to say whether those results would be beneficial, because the primary problem is still unresolved (presumably because of problems with diet compliance).

I hope that you can find a way to better utilize the diet, especially in connection with all the traveling you have to do for your work.

In the meantime, have you tried taking an antihistamine? For many of us, they work as well as a corticosteroid if mast cells are part of the problem (and they usually are).

Tex
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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.
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Post by hoosier1 »

Gabes,

I am sorry you are feeling unwell too. It is ironic that I reached out to you right now. Cosmic karma of some sort but most definitely a very small world.

The “mud BM” thing sounds like me most of the time. That is a good description. I know prednisone won’t heal per se, just trying to jump start the process that I know I need to follow. Perhaps I should drop to Entocort. But I rarely have watery BMs anymore...

I hope you are one of the lucky ones who gets to keep her job, if that is what you desire. That is never a good situation for stress but certainly keeping my fingers crossed for you. We have just gone through a very stressful period at work too and it’s not over by any stretch. I don’t know if it is worth it anymore. Going to do some heavy thinking over the holiday and a look at my finances to see what my options are.

Your mother’s condition is interesting as my Grandfather had UC and had a stoma as well. I have always wondered about progression to Chrons or UC, and since my last colonoscopy was pretty much useless as they failed to take biopsies, I am sure that another one is in my near term future.

And regarding my ability to de-stress and settle my mind, I guess I don’t do that very well, although I have adopted a better “I don’t give a crap” attitude lately. The walking is simply to clear my mind and prevent being too sedentary. I admittedly have too much on my plate and too many who seem to be dependent on what I do or don’t do.

I hope you find the peach you deserve, Gabes. I hope I can too.

Tex,

New years resolution, starting today is refocusing on diet compliance. My wife and I just came back from the store with the right foods. But I can’t get out of my head the result of my defocography too, that shows perineal descent that could be causing mechanical constriction. It sure feels mechanical. But the CT will hopefully be enlightening, for better or for worse.

So here I go again trying to redouble my efforts for proper adherence to the diet. I know I can do it while I travel, so long as I can trust the restaurants that profess to have GF menu options.

I recall the discussion about antihistamines and I am not sure that I saw a long term benefit from their use. I was talking them to keep my ears unplugged when I fly, as that has now become a problem for me as well. But I will re-explore their use following my CT scan and results. Is there a specific brand that others are using?

So good to hear from both of you! I value your input and your support. You two are a lot tougher than me by a longshot.
"It's not what I believe. It's what I can prove." - A Few Good Men
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Post by tex »

Rich wrote:Is there a specific brand that others are using?


Some seem to work better than others, on an individual basis. Allegra and Claritin Redi-Tabs seem to be popular for morning use, and Benedryl is popular for bedtime use (since it causes drowsiness for most people). If you choose to try Claritin, be sure that it is the Redi-Tabs version, since the regular Claritin contains lactose, and some of us apparently react to that version.

It's certainly possible that physiological irregularities might be compounding the problem. Many of us have experienced those symptoms though, at one time or another during our recovery, including me. I was having ribbon-like stools early on, and at the time, a CT scan showed my intestinal walls to be thickened.

Tex
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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.
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Post by Gabes-Apg »

Rich,

I am not sure that I am tougher to stick to the eating plan/lifestyle.... more so it is a necessity, to be well enough to work, strict compliance is my only option....
No partner, no savings, no relatives near by ... Leaves limited options.
I don't want to spend my days with chronic symptoms to go through the process of getting sickness benefits.

If you have the time, some of the links and articles I put in a thread a few days ago might be of interest.. The one with inflammation attn Jon in the title...

Having ongoing inflammation is risky behaviour.... Aside from the gut and linked symptoms, it will also affect teeth, bones, liver, health of the nerve endings, etc etc... These are not maybe's.... They will happen, ongoing inflammation will accelerate their occurrence.


Good luck with the pondering...... It is hard to make decisions when there are so many variables and unknowns....
Gabes Ryan

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Post by hoosier1 »

Thanks Gabes...

I guess I am more in your frame of mind now than I ever have been. I too feel like I have limited options as I have a lot of people who seem to directly depend on me. Puts a lot of stress on me for sure. And like you, I don't want to spend my days with chronic symptoms. And I surely don't want to depend on others. Although leaning on others who can support this burden with me isn't such a bad thing.

I can honestly say I felt I was managing pretty well for the last several years. But as I look back on those years now, I realize they were likely leading up to a more acute phase. Things were worsening... I felt it. How foolish I was to think I could just muddle along without being strictly disciplined to healing myself. I know better than that!!!!!! I hope its not too late.

And it is hard to make decisions with so many variables and unknowns.
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Post by Gabes-Apg »

Rich,
You were not foolish ..

Our shame based society, schooling, workplace, medical system, trained and conditioned us to 'overcome and get past barriers' move on, soldier through blah blah blah.... Take some meds and get on with life

The quirky part of mc (and other autoimmune) there is no getting past and putting it behind us, it is part of us, we have to accept it, love and nurture it like a hurt puppy...
When you befriend it and all it's quirkiness, there is peace, less symptoms...

This moment is your awakening, take the time and ponder, don't rush it, the answers will come.
Gabes Ryan

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Post by brandy »

Hi Rich,

I had a lot of troubles with transposed letters on the keyboard early on with this disease. The metanx otc vitamins really helped particularly the absorbable folic acid that is part of the metanx mix. Go up to treatment discussions, second sticky down and read up on the otc version of metanx. Prior to taking the otc version of metanx I took a regular b vitamin but it did nothing to help my brain.

The second thing that consistently helps my brain is getting enough fat in the diet---I eat avacados, olive oil, coconut oil and some ghee. On a lower fat intake day my brain does not operate as well.

The fats may help with the C as well.

Brandy
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Post by tex »

Gabes wrote:Our shame based society, schooling, workplace, medical system, trained and conditioned us to 'overcome and get past barriers' move on, soldier through blah blah blah.... Take some meds and get on with life

The quirky part of mc (and other autoimmune) there is no getting past and putting it behind us, it is part of us, we have to accept it, love and nurture it like a hurt puppy...
When you befriend it and all it's quirkiness, there is peace, less symptoms...

This moment is your awakening, take the time and ponder, don't rush it, the answers will come.
Brandy wrote:I had a lot of troubles with transposed letters on the keyboard early on with this disease. The metanx otc vitamins really helped particularly the absorbable folic acid that is part of the metanx mix. Go up to treatment discussions, second sticky down and read up on the otc version of metanx. Prior to taking the otc version of metanx I took a regular b vitamin but it did nothing to help my brain.

The second thing that consistently helps my brain is getting enough fat in the diet---I eat avacados, olive oil, coconut oil and some ghee. On a lower fat intake day my brain does not operate as well.

The fats may help with the C as well.
Wow! This is one awesome group! I am blown away by the understanding, depth of perception, and cool logic in these posts.

Your insight is truly impressive, ladies! Hanging out here makes me feel as though I'm enrolled in post-graduate courses for doctors who actually get it.

Great posts!

Tex
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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.
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Post by Gabes-Apg »

Dr Persky.... I feel honoured to get to hang out with you too!
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Post by JFR »

Gabes-Apg wrote:Rich,
You were not foolish ..

Our shame based society, schooling, workplace, medical system, trained and conditioned us to 'overcome and get past barriers' move on, soldier through blah blah blah.... Take some meds and get on with life

The quirky part of mc (and other autoimmune) there is no getting past and putting it behind us, it is part of us, we have to accept it, love and nurture it like a hurt puppy...
When you befriend it and all it's quirkiness, there is peace, less symptoms...

This moment is your awakening, take the time and ponder, don't rush it, the answers will come.
I agree 100% with Gabes. Most people join this forum looking for the "cure" and while figuring out what to eat and not eat, what medicines can help and which ones can hurt, is crucial, just as crucial, for me, has been learning how to adjust my attitude, accepting that this condition is for life and I need to learn to live with that. I have been dealing with digestive issues since I was 20 years old, sometimes better sometimes worse but always present. I used to think "why me?" but it finally dawned on me "why not me?" and that has made all the difference. There is no reason that I should be exempt from physical challenges and I need to simply accept how things are for me in this world and figure out how best to live with whatever comes my way. Better to be a gentle healer than a ferocious warrior.

Jean
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Post by OttawaGrl »

Hi Rich,

Lately I have been very similar to what you have described. It comes for weeks on end.. constipated d.. And it feels like everything shuts down while I am trying to go to the bathroom. And I constantly feel that I have to go. I can never seem to empty my bowel! I do have an intussusception that I am still waiting for my GI to address... But I find when my intussusception is causing me problems, that is when I get the constipated d..
I hope your new Dr friend helps you out!

Tracy
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Post by sunny »

"Rich, You were not foolish ..
Our shame based society, schooling, workplace, medical system, trained and conditioned us to 'overcome and get past barriers' move on, soldier through blah blah blah.... Take some meds and get on with life
The quirky part of mc (and other autoimmune) there is no getting past and putting it behind us, it is part of us, we have to accept it, love and nurture it like a hurt puppy...
When you befriend it and all it's quirkiness, there is peace, less symptoms...

This moment is your awakening, take the time and ponder, don't rush it, the answers will come.

I love this group! Gabes, this response to Rich made my day... and it is only 7 am! Thanx for your generous, caring spirit. I loved the metaphor of loving and nurturing ourselves like a hurt puppy... a new approach for me as I have been longing for the day when "everything is normal..." This is my normal.
Sunny
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