Hello, it's been a long time....

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Tanya Lynn
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Hello, it's been a long time....

Post by Tanya Lynn »

Hello,

It's been a long, long time since I've posted here and I just wanted to say Hello to the New People and there are certainly a lot of New Peeps here. I know this is a great place to be when you are trying to figure out what's happening to your body. I see so many of the same people that where here back 4 years ago when I found this site, kudos to everyone and I'm sure everyone has found a place of comfort and support.

Well, I want to share my exciting news that I got for 5 weeks and then all hell broke loose again. I had my 5 year colonoscopy on Jan. 14, 2015, and when I got back my results from the biopsies, I was SO EXCITED beyond words..... NO EVIDENCE OF MICROSCOPIC COLITIS!!! Boy, I was so excited, shocked, just thrilled to see the results. I haven't had any issues' at all for a long time as far as the D, I had gone back to being Constipated like before but no real complaints. I was still following my diet, GF, CF, SF, no eggs, so many more to list, almost Paleo. Life was back to being normal and I was just fine..... Then on Feb. 21, 2015, just 5 weeks after the colonoscopy, I got a bad stomach virus and was having really bad D, going up to 10 times a day, this wasn't any D, it was explosive, powerful and foul smelling like before. But, I just kept thinking that since I just got the clean report from my colonoscopy in Jan., that the MC couldn't be back. Well, the bad explosive D went on for a week, I was going now up to 15-18 times and day, very sick, dehydrated and just plain tired from getting up all hours during the night to use the bathroom. I finally went into see my regular Dr., she gave me Lomotil and something else for the cramping. Well, that didn't help one bit. I went to my acupuncturist, I'm still just thinking this was just a virus, but it was going on for so long, she told me to take Activated Charcoal, I did, didn't stop the explosive D. Anyway, I kept a Poop log, and I was still going on an average 18 times in a 24 hour period. After 26 days of non-stop D, I called my GI up at Baylor and I couldn't be seen for 2 weeks, I just cried and asked, "What the hell does his patients do if they are sick?" I explained what was happening and to tell the Dr., but at this point I was just desperate and I called my Dr. that gives me my thyroid meds. (compounds) and was able to see her that day. I went in with my old bottle of Entocort and begged her to write me a script. She looked at it and the looked it up on her phone and She said "OK!" I was so excited that she wrote me the script. So, just to make a long story short, after leaving her office I get a call from my GI and said he could see me that Thursday March 19th, and it was Monday March 16th. So, I went to the drug store to get my Entocort and again was shocked to find out that it was only $10 with my co-pay. The last time I was on Entocort back in 2010, I remember it was very expensive.... I was so thankful for this good news. I took just 2 pills as soon as I got the Entocort and then 2 on Tuesday and it made such a difference!! It had decreased about 40% in just 2 days. Praise God for that, but I was so depressed, I didn't want to believe the MC was back, I had just been told that it was gone and I guess I was just so naive, I thought it meant the MC was gone for good. Dumb me...
By Thursday when I went to see my GI, the D had decreased by 60%, and I was feeling so much better, only getting up twice a night... After I told my Dr. what had happened and that my other Dr. gave me the Entocort, she had also had me submit a stool sample and I was waiting on the results from that. He said, "That's great, but if you are already doing better on the Entocort, then that tells me that you don't have an infection, the medicine is doing it's job and to take 3 a day." He also said, "Yes, the MC can come back, and it was apparently back." He told me to monitor my diet, etc. But then he said, "You know it could be much worse!" I wanted to strangle him..
"What do you mean worse, going 40 times a day?" "No" he said, "You're not going to die from this!" I remember this is the same thing he told me last time. When you are feeling this bad, you really want to DIE...

So, it's been 10 days since I started back on the Entocort and it has helped me so much. I'm still going about 5-8 times, more so in the mornings and then it seems every evening around the same time 7 pm. As far as diet goes, this part is harder than what I was eating. I can't have any salads or not much fruit... I'm just eating alot of chicken, rice, potatoes, the same old routine.
I've been wanting to write here, but I didn't want to take away anyone's hope... I guess I've just got to understand that this is a lifelong struggle that we all will have.
Tex, I do have a question though. I've been racking my brain as to what caused it to come back after just 5 weeks of having my colonoscopy. Can having a colonoscopy cause the MC to flare back up? It's seems too long after, but I was just wondering have you heard this before?
For everyone that's new here and all the old friends here, "I'm so glad that I have someone to talk to that understands what the heck we go through when faced with this crappy disease!"
Sorry for the long post,

Tanya
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Post by tex »

Hi Tanya,

I'm sorry to hear that the MC made such a vicious return. Sometimes that can happen, but usually it's not that intensive. Last November for example, I had a brief MC reaction that was apparently triggered by a couple of kidney stones. I never would have guessed that could even happen, but apparently the inflammation associated with the kidney stones over a period of several weeks total, triggered an MC reaction. But it only lasted for a few days, fortunately, when the second stone passed. So yes, we're all at risk.

If it's any consolation, :roll: I may be headed for another reaction, because my flu symptoms were significant enough this morning to remove any doubts that I had yesterday. I just checked my temp, and it's usually between 97.6 and 98.1, but it's 99.9 right now. It's always something, isn't it. I thought I had escaped the flu season this year (by mostly staying away from public places, but it appears that a dental appointment was my downfall. The endodontist's breath smelled suspiciously reminiscent of the end cycle of a virus infection, even though he was wearing a mask. :lol: And to add insult to injury, I had stopped taking vitamin D 12 days ago because my level was above the normal range. Now I wish I hadn't stopped, but that wouldn't have been any guarantee that I couldn't catch the flu anyway. When someone is breathing directly into your face (and your mouth is propped wide open) for about a half-hour, I have a hunch that any infectious virus they might have would be tough to hold back. :sigh:
Tanya wrote:I've been wanting to write here, but I didn't want to take away anyone's hope... I guess I've just got to understand that this is a lifelong struggle that we all will have.
I realize that you didn't crave to have a need to post here (and I wish that you didn't have a need to post about a flare), but welcome back. As the old C & W song goes, when we're here discussing the effects of MC, it's "just another day in paradise". :lol:

Never hesitate to write because you're afraid that bad news may be discouraging. Anytime you have any questions or feel the need for support, please post. Bad news is written all over microscopic colitis, so we're used to bad news. If you look around, it seems that most IBD boards contain a predominance of bad news. At least we're fortunate enough to see a lot of good news most of the time on this board. Besides, most of us have realized by now that virtually anything can happen with MC. We've learned how to remain optimistic about our recovery prospects despite the absence of any signs of improvement. We know that patience and persistence eventually pays off.
Tanya wrote:Tex, I do have a question though. I've been racking my brain as to what caused it to come back after just 5 weeks of having my colonoscopy. Can having a colonoscopy cause the MC to flare back up? It's seems too long after, but I was just wondering have you heard this before?
For everyone that's new here and all the old friends here, "I'm so glad that I have someone to talk to that understands what the heck we go through when faced with this crappy disease!"
Sorry for the long post,
The timing may have just been coincidental. But it's well known that all the approved cleanout solutions are very caustic on our intestines, and there have been many case studies reported where the prep triggered MC (even thought the patient did not have MC previously). So it would be relatively easy for it to trigger a relapse in a patient who was in remission (even long-term remission).

I have a hunch (but this is just an unproven hunch) that the cleanout solution irritated the mucosal lining of your intestines (that's almost always the case for everyone, but some people are more susceptible to this than others). It seems to take longer than most of us would assume, for damage to the lining of our intestines to heal, so the cleanout left you with some degree of inflammation (below the threshold at which an MC reaction is triggered), and it left you vulnerable to any additional inflammation that might add fuel to the fire (inflammation from multiple sources is cumulative). If the virus hadn't shown up, you probably would have been OK after a few more months had passed, because as long as you were being careful with your diet, the inflammation would have slowly faded away. But before the inflammation due to the prep could do much healing, the virus tipped the scale by kicking the inflammation up another notch or 2, so that it exceeded the threshold at which an MC reaction is triggered.

At least that's my best guess, FWIW.

And there's nothing inherently wrong with long posts, because longer posts are able to convey a lot more useful information than short posts (of course they can also contain more BS :lol:). Now that you're back on the Entocort, and you're fine-tuning your diet again to remove the foods that you can eat when you're in remission, but not while recovering, you should soon have your life back. Your relapse seems to be one of the more aggressive cases, probably because the 1-2 punch of the prep followed by a virus may have amounted to a perfect storm for triggering MC.

To support this theory, note that in my first paragraph in this message, the first kidney stone didn't trigger an MC event. But surely it set the stage by establishing some background inflammation in my system. We know that inflammation was surely present, because my temp was up on both occasions, as the stones passed out of the ureter. When the second stone passed (exactly 3 weeks later, to the day), it immediately triggered an MC reaction (another example of a 1-2 punch, so to speak).

Another possible explanation comes to mind. Since the inflammation that causes MC can be self-perpetuating once it gets going, it's possible that it took 5 weeks for the inflammation from the prep to expand to the point where it triggered a full flare. IOW, it's possible that what you thought was a stomach virus might have been the opening volley from an MC flare. :shrug: To me, the 1-2 punch theory seems more likely, but who knows?


There are others here who were in long-term remission, who had a major relapse due to a very stressful event in their life. So MC can be triggered not only by physical (or chemical) stress, but also by emotional or psychological stress. It's a nasty little disease, and while your GI doc is correct that we probably won't die from it (unless we become too dehydrated), MC is almost always lurking somewhere in our body, patiently watching and waiting for an opportunity to catch us slipping up on our maintenance treatment program, so that it can pounce. :sigh:

Tex

P. S. By the way, a clean biopsy report proves that you know how to treat this disease, so you should be proud of that. As the sign in every business workshop says, "We're not responsible for accidents" (because some things are beyond our control), and that definitely applies to MC, also. Sometimes it seems to have a mind of its own.
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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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Tanya Lynn
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Post by Tanya Lynn »

Tex,

As always you are so smart!! I believe your hunch is exactly right. That horrible cleanout solution that is very caustic on our intestines really tore me up drinking it and I couldn't finish it all due to the pain and cramping it caused. I also had the upper and lower colonoscopy and if this caused me to have the MC to relapse, By Golly I will not have another one for a very long time....

I say that it started with a stomach virus because my husband and myself both got sick at the same time while his only lasted about 2 days, mine never stopped only got worse.
It just makes sense everything that you said, I'm so glad you are still here and taking care of everyone here.... You are still the best ever.

I hope you're not getting the Flu, I'm just getting over it now. I got it about 3 weeks into my Flareup, I guess my immune system was so compromised from the constant D. My grandson was sick and had a high fever so I had to watch him and 5 days later, BOOM! Gosh, it was horrible! Coughing when you can't control the D, was horrible. Then my husband got it and several other people I know had it too. It's a dosey and lasted about 10 days but we still have a cough. Oh well, guess who's not ever getting the Flu Shot again, so I will have to deal with the Flu, unfortunately. I hope you get to feeling better soon.

Thanks for the warm welcome back, and I love love your book.

Tanya
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Post by tex »

Tanya,

Thanks for the info on how long the flu persisted. I was afraid that it was going to last for a while, because it was sort of slow getting started. I could tell that something might be going on yesterday, but I still felt good (mostly just a few minor aches and pains). Today is a different story, and my temp was almost 102 when I checked it a few hours ago, so I think that removes any remaining doubts that I might have had. :lol:
Tanya wrote:Coughing when you can't control the D, was horrible.


That's for sure. Back when I was originally recovering, and still working out in the public (making deliveries). Coughing was my greatest fear. And sure enough, one day while I was unloading a truck, and I was feeling especially sick, I asked the guys at the feed store if they could fill in for me and finish unloading, because I was sure that I was going to vomit. I hightailed it over to a property line fence around the unloading dock (in the middle of Georgetown), leaned against a post, and proceeded to paint the area with projectile vomiting. For a brief second or 2, I actually that I was going to be OK. But then the supercharged retching and coughing began, and I knew I was doomed. :roll:

I reckon that modesty may not be all that it's racked up to be, because if I could have left all my clothes in the bathroom of that store, I would have. But I was too sick to take a chance on getting arrested and delayed some more, so I only left my underwear. :roll: I threw the rest away when I got home. :lol: This can be a fun disease at times, for someone who has a warped sense of humor. And these days I can laugh about all those incidents, but at the time, they were downright horrifying. MC sure knows how to teach humility.

Thank you for the kind words.

Tex
:cowboy:

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 Polly »

Hey there, Tanya Lynn!

Good to hear from you again, but sorry for the reason. I just had to put in my 2 cents worth, because I had exactly the same experience as you!

My 5 year colonoscopy still showed evidence of MC, but my 10 year colonoscopy biopsies were clear - no evidence of MC. I was over the moon, just like you! However, within weeks I had a major flare. I am sure it was due to two things: 1.) the caustic cleanout procedure using a 14 day supply (at one time) of Miralax (which contains an industrial chemical, polyethylene glycol) and 2.) stress. In fact, after the procedure, when my GI doc gave me the photos that she took inside my colon, I could see that the lining of the gut looked "angry" - bright red and extremely inflamed. This was definitely due to that chemical, I am sure. Also, at this time, my 14 year old beloved golden retriever was failing, and we knew we would soon have to make the decision to stop his suffering. Within weeks of the colonoscopy I had the major flare.

I was so thrilled when I thought the MC was gone that I wrote a post titled "TADA - my MC is gone" or something like that. It turns up every so often here to haunt me. LOL!

The moral of the story is that flares can occur anytime - even after a normal biopsy result! Usually when I get a flare, it helps to return to an extremely limited diet of my very safe foods. But I have come to realize that flares seem to "take on a life of their own" and may persist much longer than we want them to. Also, that stress is always a major trigger for us.

I am happy to know that Entocort is working again for you, and I hope that you have an uneventful recovery from here on.

Love,

Polly
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Post by Sheila »

I'm so sorry you both have relapsed, Polly and Tanya Lynn. I thought you were cured Polly and that was inspirational.
After my last colonoscopy I told my GI that he would have to catch me if he wanted me to have another one. I was kidding, sort of. Not anymore. At my age, 73, I don't think I'll have another colonoscopy. I recall someone telling me that after a certain age, colonoscopies aren't necessary.

I hope normalcy returns and stays a very long time.

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Post by jessica329 »

Same here. After my pregnancy (13 months ago), I didn't have a flare for so long that I thought I was cured. I got loosey goosey with my diet and then BAM! Revenge of the almighty MC. This morning was a little concerning; 3 pretty bloody stools in 1 hour. Hopefully tomorrow morning is normal. I agree that this group is so supportive and comforting!
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Post by Tanya Lynn »

Tex,

I hope you are feeling better or at least gotten through the fever part. Whatever is going around right now, flu or just a cold, it's certainly taking me awhile to feel better. I'm still coughing and just have no energy and not sure if it's this horrible flare up that's zapped me of my energy plus I've lost 10 lbs since it started. Tex, I hope you've got someone there to take good care of you cause you're always taking care of everyone here. Also, your story about getting sick and messing up yourself.... Oh my, I wouldn't have come out of the restroom! Yes, this disease does have a warped sense of humor. I just can't believe you left in just your underwear.... that's just too funny.

Polly,

Hello, that you so much for your post, I really appreciate it! Boy, was I ever surprised to hear that the MC gone, I really thought, GONE!
Little did I know, I had been doing so good, no problems in so long and then BOOM, "IT"S BACK!" I had told everyone that my MC was gone and now it's back, I don't think they will understand or believe me. Only my husband knows for sure, he's witnessed my constant trips to the bathroom 24/7 and the pain and tears. But thank goodness for the Entocort, it's helping a lot. I'm not having all the side effects this time from the Entocort, I think I'm in better health this time. So hopefully, this flare up won't last long.... Thanks again, Polly for sharing your story.

Shelia and Jessica,

Thank you for sharing as well and this is an awesome group of people. Just to have someone to understand what you are going through means the world to me....

Tanya
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Post by Gabes-Apg »

Tanya
sorry that you had the roller coaster ride of 'its gone' and 'its back'
and the harsh reality that MC is for life.

all going well, your ability to recover from this flare and heal will be quicker and easier...
you know what works for you so it should not be the overwhelming maze like it was the first time

healing hugs
Gabes Ryan

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Post by tex »

Tanya,

Thanks for the good wishes. I'm on day 4, and my fever is down a bit, and I do feel better. I still have a long way to go, but it least the fatigue has let up enough that I can do most of the essential things without becoming totally exhausted. I'm still not kicking very high, but at least I'm better.

And yep, I seem to be losing more than 2 pounds per day, even though I try to eat all I can without absolutely forcing it down. A lot of the stuff I have available (GF soups, etc.) have virtually no protein and no calories. :roll: If I hadn't had some chili in the freezer I might have starved by now. :lol:

I should have written that description a bit more clearly. Actually, I was trying to say that I left my underwear in the bathroom trash can, and put the rest back on. I had to wear something sort of decent because I had to walk through the main part of the store on the way back out of the bathroom. And remaining in the bathroom was not an option because the odor in there would have knocked a buzzard off the back of a garbage truck at least half a mile away (as GrannyH used to say). I hope it didn't remove the paint from the walls. I don't know if it did, because that was the first and last time that I ever went in there. Can you imagine the reaction of the first person who came along after me and opened that door? :millianlaugh: I'll bet that some pretty choice words were spoken on my behalf. But what the heck? We do what we have to do with this disease, and hope that we can laugh about it later.

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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