No Surprise Here- I still have MC after ten years

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DebE13
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No Surprise Here- I still have MC after ten years

Post by DebE13 »

Well, my story hasn't changed..... I still have MC and I still am struggling with my GI. My husband wants me to find a new one. I'm burnt out on finding new doctors (thyroid). I saw his nurse a few weeks ago (since it's easier to get an appointment with her than the GI) to do my pre-colonscopy visit. She suggested at that time that we try rifaximin since the doxycyline brought back Norman for the first time in TEN YEARS when I was undergoing Lymes treatment. I wanted to try it immediately but she said I needed to wait for the colonoscopy and upper endoscopy. Time moves so slowly when you live on the toilet. So I waited two weeks- had the procedure this past Monday and got a call yesterday that everything looked good, I still have the MC dx, and I should continue with the 9mg of Entorcort that does not help. Of course, I was bewildered. I happened to get the call at work while I was driving downtown in a dump truck. I pulled over to the side of the road, blocked a lane of traffic, and shut the truck off so I could hear. Timing is always perfect.

I asked about the Rifaximin and it seemed like they had never heard of it before. So now I wait.

But the story gets more exciting. This time they only found one pre-cancerous polyp in the mid rectum. It was removed and it's not cancerous. They also found a 7 mm polyp in my fondus when they did the endoscopy. The results on that were fine and I was told I have no further follow up on that. That concerns me a bit. Stomach polyps are new.....

I also get to go to the five year plan for colonoscopies instead of my usual three. She said last time I had four and now I only had one. I won't argue but that concerns me too.

Hold on..... it gets better. During the office visit I expressed my concern about my hemorroids and that they were quite painful. The GI said I have none but have an anal fissure. When the nurse called me yesterday I asked about what the plan was for that. She said she didn't see anything noting that.
:shock:

The report notes that there is a slight narrowing of the anal canal with tenderness in the postierior midline. That's putting it mildly. I told the nurse that it feels like I have a flaming tennis ball up my butt compounded by the fact I lift 40-60# all day long in the warehouse. She got a bit quite and said she would ask the doctor. I explained again that I am getting up a couple time each night with WD and go an additional 6-8 throughout the day. I told the story again about the Lyme's and how everything went back to normal. She asked if I had a stool study recently and wondered why we didn't order that. I told her that wasn't it. The U-biome testing came in handy. They aren't familiar with it but it did show all the nasty pathogens that I was tested for came back negative. She also mentioned possibly doing another lactose intolerance test. Now I just did the test for SIBO and that was negative but shows I have high methane levels. At my office visit, the nurse said I had high spikes during the initial part of the test but the it dropped somewhat. I've already done the lactose intolerance test twice since 2007 and they were also both negative. Lactose or casein - dairy causes an upset. Not necessarily D but I wouldn't know because that's my norm. I do get a stomach ache though, almost immediately and I notice my joints ache more than usual days after. I'm not doing the test again. I don't eat dairy anyway. I've learned that the hard way.

Am I wrong for thinking this is bacterial? some imabalance? Why did the doxycyline work like a charm? Although the metronidazole antibiotic they put me on made me sooooo sick. My head is spinning because the nurse said they are running out of things to try.

All the other biopsies came back normal in the esophagus and the mucosa in the duodenum, stomach, terminal ileum, and whole colon.

They are also waiting on results of testing for a sugar intolerance. I can't think of the name off the top of my head but it is the lack of an enzyme for processing sugars that causes D. I don't think that's it because my diet hasn't changed and this summer when the lovely Norman took up residence at my house for three weeks, I had no issues. I guess it's good to test to rule it out.

The only thing that sits in the back of my head is if the rifaximin works the WD will return when I go off. The nurse even said that I would take it for two weeks and HOPEFULLY get 2-3 month of relief and then need to go on it again. Well, then that isn't addressing the root cause. I had hoped food was my root cause. I've been at the GF, DF, SF, egg free diet since 2011. I monitor legumes and nightshades and any other food that causes suspect but always thought I was just missing something. Is that still the case or is there more going on?

I used to have perfect skin and within the past few years have developed the bumpy skin on the backs of my arms and my legs (not sure if that's psoriasis or not). It's all tied into digestion and I am clueless as to what to do next.

I know I am rambling but this just never ends.........
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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tex
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Post by tex »

I hear you — and the beat goes on.

We all have severely restricted abilities to produce the enzymes needed to digest various sugars after having intestinal inflammation for a while. That's a side effect of the inflammation associated with MC (your doc should realize that). IMO, with your restricted diet and your years of compromised digestion (plus antibiotics), you're bound to have a compromised (unique) gut microbiome. I don't know of any way to improve that biome (other than temporarily) without improving your digestion.

The skin issues are probably due to the effect of years of compromised absorption causing problems associated with certain nutritional deficiencies.

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 crervin »

I am so sorry to hear this Deb! I think of you often. I feel like what is causing your chronic D is the thyroid meds or other meds you have to take. I totally realize you can't stop those, which really stinks! Still to this day, even though I'm in remission, I can't even take as much as a vitamin d supplement. I have to use lotions and patches.

I so hope you can get some help!!
Martha E.

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Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
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DebE13
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Post by DebE13 »

Thanks for your thoughts Tex. I did find the uBiome information interesting. It lists a host of organisms in which all are below a healthy reference range. Good to know but how to correct it is out of my reach. Only two of the twelve are available in probiotic form. Not a big fan- I have taken many and noticed nothing. I did take a probiotic on and after the antibiotics but still
No noticeable results.

Martha, I take Armour now and was very careful about the fillers when I took the synthetics. Interesting you mention it. I don't think it's so much the meds... I spent over three long years trying to get my thyroid straightened out and I am actually comfortable with where I'm at. The nurse did mention that my TSH is low and that could contribute to the D. It is suppressed because of my cancer history. I agree- not much I can do.

Although, I keep going back to being on the doxycycline- I didn't change anything, how I ate or how I took my meds and everything was normal.

Still waiting for the phone call.... still hopeful since that's the only direction to move.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Post by HockeyMom »

I feel for you Deb. I just completed my 4th week off work due to diarrhea. Had a PCP visit/GI visit and sort of a last minute (someone cancelled out) colonoscopy done yesterday.

Basically I'm just waiting to start Entocort I guess. The new young GI doc said there are a few ways we can go after the biopsies come back. Huh, really?? She sort of mentioned the, "we will see if the MC is in remission or if it's just IBD". To that I answered, "I didn't think this just went away, or TURNED into IBD".... Super. Anyway, of course I was completely out of it when they wheeled me to the car driven by my brother...who didn't want to come back and hear what the results were. I did get the paper report that basically states everything looks normal, no polyps. Which is really why they want to do colonoscopies on me, my dad died from what started from colon cancer.

I am envious that you are getting out of the house. I am doing a little of that every once in awhile, mid day. But then may have to run to bathroom at whatever building I make it into. I am starting to go crazy and think I will go for a drive tonight with my poop bucket by my side just to get out. Pooping in buckets in cars is not foreign to me unfortunately. On top of this I am going rounds with the insurance/short term disability people. At some point if this doesn't change I will have to leave my job and consider disability. More stress.


Anyway, just wanted to say I hear you and feel for you!!

Laine
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Post by HockeyMom »

That should say I saw PCP and GI doc Tuesday and had colonoscopy Thursday. Don't worry peeps, it wasn't so last minute that I didn't get to have a glorious night on the toilet with the prep.....

Laine :roll:
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DebE13
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Post by DebE13 »

Laine, I am so sorry you are missing work. Yes, I am thankful I am able manage at work without great difficulty. I couldn't imagine how horribly that impacts life. You did make me chickle though with your reference to the bucket. I have one in my basement as a precautionary backup. It's amazing what we do to adapt.

I have been thinking a lot about how I got this bad and it seemed to have snuck up on me. Although, I know I put my MC on the back burner since 2013 and had been soley focused on my thyroid issues. I may end up finding a new GI but I'm not too hopeful that the next one will be any different.

I hope your results help you find some answers.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Post by TaiaK »

Deb

I wanted to respond to the stomach polyp portion of your post. When I was dx with LC in May 2015, I also had an endoscopy to biopsy for celiac. After the whole procedure, the GI came in to talk to me and had the whole printout with pictures. She pointed out the picture of my stomach and there were many polyps. They are called fundal gland polyps. She wasn’t concerned but said she has only ever seen this in patients that had been on a PPI for a long time. I have never taken a PPI. Biopsy negative and they told me not to worry-no follow up on that required.

I posted about all this back in May 2015 and I think there was a response saying that the stomach polyps are probably just an inflammatory response. I’ve not thought much about it since so I just wanted to post so there is one less thing for you to have to hink about!

Taia
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Post by HockeyMom »

Thanks Deb-

It still blows me away that my life has changed so much in the past year and a half. I know that stress plays into all this and my life has been crazy stressful, but really I truly believe that has all settled down in the past few months.

I now believe that I need the cholestyramine but am still not real functional after restarting it a month ago, and changing brands/upping the dosage over 3 weeks ago. Other than the Entocort I'm not sure what else that they can offer. Dr was rambling on about stuff for IBS but why talk about that when I was diagnosed by biopsy in 2011 with MC?? And I've heard of the antibiotic stuff you were talking about (internal med doc asked if I had ever been on it..) but why do an antibiotic for very temporary benefits??? I don't understand that...if we are all trying to avoid antibiotics in our lives.

I have no thyroid problems fortunately and histamine doesn't seem to be my issue (I don't think...did antihistamines daily for like a year per the board here and it didn't make any difference that I noticed)..I just need to gain weight as I am now 100# at 5' 6"...normally am 123# when things are NORMAL. I look absolutely skeletal and don't like to look at myself naked hopping in the shower.

Laine
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Post by Sue777 »

So sorry you're having these challenges and getting very little useful support from your doctors. We do know that we are our best doctors and need to find the answers pretty much on our own, but we still need them to order the lab tests and the medications, unfortunately.

I, too, am dealing with the same two challenges: thyroid and colitis. I have Graves Disease so opted to have my thyroid removed in 2013 thinking that having my TSH levels totally controlled by medication would make things easier. Hah! I've been on a constant roller coaster for the past four years trying to get to and STAY in the right TSH range, and every time I get there, it seems to change within 6 months. So then we adjust my Synthroid and I go through 5-6 weeks of symptoms and side effects from my changing levels. I've been trying to figure out for years what is causing the TSH to keep changing and think it might have something to do with the Entocort that I go on and go off of so regularly. Hopefully I will either stay at the current dose of 1 Entocort a day or successfully get off totally in a few weeks but right now, I need some CONSISTENCY. Wow, wouldn't we all love some consistency, both in our medical conditions and in our stool?! :lol:
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Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Post by sunny »

Deb,
I felt your dismay and discouragement that after all these years, all these colonoscopies, all these drugs, all these tests, your GI doc doesn't know what's wrong with you! That sounds like mal-practice for goodness sake.
I'm thinking like your hubby...perhaps you need someone with a new viewpoint, someone who will see your case as a challenge ...this team seems to be grasping at straws...just throwing meds at you in hopes one will work!
Like you said, when we have MC , antibiotics are not our friends...they destroy our Biome and add to the problem...and your doc should know that. I'm disheartened for you....

I have no answers for myself....at my age, pushing 80, after years of trying so many approaches & still being so sick , I'm not sure where to turn either....

My daughter has started the Plant Paradox diet and I got the book from the library and also read the comments of this group where there was a lot of enthusiasm at first, but it seems that died out...so not sure...they have an online group who have people who claim to have been saved from death or come through many various diseases .... so I'm reading and keeping an open mind...
Sunny
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Post by DebE13 »

Thanks Taia, I've never used a PPI either. I'm hoping that I can find something to control the D and the inflammation will subside and some of the other issues will fall into place. I'm sure it won't be as easy as that. Thanks for the reminder that it is something I can put on the bottom of my list to worry about.

Laine, maybe you could use extra olive oil or coconut oil in your diet to add to your calories. I know how you feel- I'm not underweight by any means but don't like what I see when I look in the mirror. Most the time I feel I look like a zombie.

I am not a fan of antiobiotics either and was horrified to go on them this summer but had no choice because I was so sick. Odd how one little tick bite can cause such havoc. It was a shock to have the result I did. There has to be something to it though.

Sue, I feel for your frustrations. I took the generic synthroid, generic liothyronine, tirosint, and finally found a doctor (#4) who allowed Armour. It was not a night and day difference but I love it. Maybe now that you are gluten free you will notice improvements. I've ridden the roller coaster and often felt like bailing in mid ride but that is never an option. I've been on and off entocort more times than I can count and it doesn't help at any dose. Well, I should say it only somewhat helps with night rumblings but I don't like taking it. I am off now even though my GI wanted me to continue. Consistency would be a blessing.

Sunny, it has been frustrating at how slow they have been to respond. I've come to accept that they are doing what they are trained to do and follow their flow chart of drugs to try. I know it's not their fault that I am reacting poorly to most of them. I have avoided them for many years and downplayed my problems so they would just leave me alone. Something has changed in my condition compared to when this first started ten years ago. The on-going inflammation must be the cause and that falls on my shoulders for allowing it to go on. I was hoping that my diet would improve things and then recently moved on to the plant based antiobiotics (atrenta, oregano oil, etc). No change except for a lighter pocket book. I am glad I tried because I would have always wondered.

I am actually pushing for the antibiotic route. Not thrilled but it was what sparked a three week span of Normans. Go figure. I know it isn't a permanent solutiion, if indeed, this one will work as the doxycycline did but I need to do something even if it isn't ideal.

I don't see what a new GI will do any differently. I believe my GI hasn't taken action because the sucrase-isomaltase malabsorption test results haven't come back yet. Not that I think it will make a difference but apparently he does. I don't excuse the fact that he didn't seem to be aware of my complaints but I come to expect it since it's been a common theme with all my health care providers.

I think many of us just move from one battle to the next. I have learned that things can always be worse.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Post by tex »

Deb wrote:I have learned that things can always be worse.
Ain't that the truth. :emptytoiletpaperroll:

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 HockeyMom »

Usually i add a bit of coconut oil to my turkey or elk/antelope when I eat as all those meats are so lean, lamb is the only thing that seems fatty. Yesterday and today have been better...actually haven't been rumbling/grumbling and haven't pooped in 30 hours now. I took 2 immodiums yesterday, but 6 hadn't done much last week so....we will see what is going on. Maybe, just maybe 3.5 weeks of Sandoz cholestyramine at a higher dose is working?? Whenever I say something completely stupid like that it backfires on me!!! Fingers crossed.

I just hope I can get back to work. This is ridiculous!!!

Laine
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Post by Gabes-Apg »

great news Laine....
dont rush the return to work... remind yourself progress not perfection
Gabes Ryan

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