NEWBIE: MC Questions

[Whyclef]

TODAY
I am a 30 year old male who recently had my third colonoscopy in 3.5 years, all three colonoscopies have revealed subtle and mild erythema inflammation in the sigmoid/rectum region and nothing elsewhere. The most recent colonoscopy was performed this past week during a hospital admission for sevre diarrhea that had some blood with it (20+ times in 24 hrs). Upon examination of my colon everything looked fairly good, other than a small subtle spot of erythema. The blood in my stool was attributed to inflammed hemorrhoids.

Friday I recreived a call from the gastro clinic nurse stating that my pathology report showed colitis. I inquried how could I have colitis since my colonoscopy showed nothing substatial, she said it was MICROSCOPIC COLITIS. I have an appointment on Monday afternoon with my GI doctor to discuss these results and treatment.

I am asking for input from your experiences, are there any specific questions I shoud ask at my appointment on Monday?

QUESTIONS
1. Can you have subtle erythema on colonoscopy and still have Microscopic Colitis?
2. Has anyone else had episodes of diarrhea that lead to 10-20 toilet visits in a 24 hr. period?
3. Would it be abnormal for the other two colonoscopies to not show Microscopic Colitis and this one come back as positive for MC?
4. Where is most of your pain located? I often have the most pain in my umbilical region. I also have pain a couple hours after eating.
5. Can MC cause significant weight loss? I have lost 30lbs. without trying since August 2011.

BACKGROUND
In September 2008, I experienced a bought of food posioning that caused dysentry, 7 days in the hospital, 40lbs weight loss, and 4 months of recovery. October 2008 I had a colonoscopy for reoccuring pain and diarrhea, results showed some mild erythema and one ulceration that was attributed to the food posioning episode. After pathology returned negative the GI doctor labeled me with IBS. That same month I developed the enteric form of Reative Arthritis as a result of my immune system overreacting to the food poisioing. It was nagging but not terrible and my Rheumy said it would disappear so I went on with life.

Fast forward to March 2010 when symptoms of frequent diarrhea, cramping, nausea, and joint pain returned. I soon was admitted for another colonoscopy that showed subtle erythema in the rectum that pathology said was non-specifc inflammation. A few days later I had a pill cam test which only showed one 'sore' in the terminal ileium where I had been biopsied during the colonoscopy. Based on those results and the pathology my GI doctor also labeled me with IBS.

Since March 2010 my GI and Reactive Arthritis syptoms have flared at various levels intermittently. August 2011 to now has marked a time where my GI symptoms have not let up with frequent diarrhea, 30lbs weight loss, nausea, and more noticeable pain. On December 13, 2011 I had a sigmoid scope which showed the same subtle erythema and the new development of an adenoma polyp. Thankfully the pre-cancerous polyp was caught early and removed. The polyp and mild erythema led the GI to order a full colonoscopy which brings me to the MC forums.

Thank you all for taking the time to read my story and thank you in advance for your replies![/b]

[tex]

Hi,

Welcome to the board. FWIW, your symptoms sound typical of MC. Hemorrhoids are very, very common with MC, due to the high-frequency D. Obviously, dehydration can be a serious problem, also, in many cases. I'll try to answer your questions as best I can:

1. Can you have subtle erythema on colonoscopy and still have Microscopic Colitis?

Yes, that's a classic marker, as seen through the scope. Most GI docs even miss that marker, because it is typically only a very slightly increased intensity of slightly darker pink, against a normal pink background of an otherwise normal-appearing colonic mucosal surface.

2. Has anyone else had episodes of diarrhea that lead to 10-20 toilet visits in a 24 hr. period?

The most common frequency is typically from 6 to 10, but many have to deal with 10 to 20 episodes a day, and some members here have had frequencies as high as 40 to 50 bowel movements, (BMs), per day.

3. Would it be abnormal for the other two colonoscopies to not show Microscopic Colitis and this one come back as positive for MC?

Your GI doc almost certainly failed to catch your MC earlier, because he either failed to take biopsies during the previous procedures, or he didn't take them properly. You can't find MC unless you look for it, and that requires examining biopsy samples under the microscope, by someone who knows what to look for. That's why so many people have "IBS". "IBS" is usually undiagnosed, (or misdiagnosed), MC, due to a failure to take biopsies, or a failure to take them from "productive" locations in the colon. It's easy to miss MC, if the biopsy samples are taken in the wrong locations, because like Crohn's disease, MC typically presents as scattered patches of inflammation, in a random pattern, but usually more concentrated in the proximal colon, (the ascending colon), and in the terminal ileum. Pathologists are not perfect, either, unfortunately, and the record shows that pathologists overlook many, many cases of MC, which are eventually diagnosed by a more observant pathologist. Also, your GI doc is probably learning from his experience, as he goes, so he's getting better at diagnosing the disease.

4. Where is most of your pain located? I often have the most pain in my umbilical region. I also have pain a couple hours after eating.

Some people with MC have no significant associated pain, while for some, the pain can be on a level with the pain of childbirth, and everything in between. My most significant pain was also located in the umbilical region, but most members report pain in the LLQ, (especially if they have diverticulosis), others report pain in the LRQ, and some report pain just under the rib cage, (similar to gallbladder disease). Pain after eating is usually associated with gas and bloating, (mine was), while for some, it actually is associated with gallbladder disease, secondary to MC, (IOW, MC tends to affects other digestive system organs, such as the gallbladder, and pancreas, especially). There's also a very high correlation with thyroid issues, (we're 7 times as likely as someone in the general population, to have a malfunctioning thyroid).

5. Can MC cause significant weight loss? I have lost 30lbs. without trying since August 2011.

MC leads to malabsorption issues for many of us, and it can result in severe weight loss for some, (it did for me), though not everyone loses weight.

Your doctor missed your MC diagnosis in 2008, and again in 2010. He probably took the biopsy samples in the wrong places, or didn't take enough of them, or your pathologist didn't have MC on his or her radar while examining your slides, and simply overlooked it. Your arthritis symptoms were almost certainly due to the MC, not food poisoning. Before I changed my diet, my arthritis was so bad that I could barely walk, some days, with the aid of a cane. That was 10 years ago. I haven't had any need for a cane in the last 8 or 9 years.

Most of us here have had to take charge of our own treatment program, because most GI specialists still don't realize that the food we eat affects our digestive system. Duh! They insist that diet has absolutely nothing to do with MC. That's like saying that the air we breathe has nothing to do with asthma, emphysema, and/or lung disease.

How long have you been taking the Paxil? SSRIs cause many cases of MC, and for those individuals who have drug-induced MC, treatments to control the MC are often ineffective, unless the drug that triggered the disease is discontinued. For some individuals, no other intervention is necessary, other than to avoid the drugs that cause it, in order keep their MC in remission, while others have to change their diet, like the rest of us, unless they want to take powerful drugs for the rest of their life.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Lesley]

Welcome Whyclef,

I see Tex has answered your questions. He is extremely knowledgeable, more so than your GI is likely to be.

Do read extensively here. Much is explained in the posts.

We are NOT alone.

[brandy]

Hi Whyclef,

Welcome! yes to #2. Yes to #5. This forum is a great resource! I was diagnosed w/ MC Aug 20, 2011. Last week I went to the Florida (gators) Ohio State game and had no "bathroom worries." Attending an all day event would have been out of the question in July. I've made huge strides in 3-4 months so there is hope at the end of the tunnel. Brandy

[Whyclef]

Everyone, thank you for the helpful information. I really hope this diagnosis is accurate and will know more after talking to the GI doctor tomorrow. I am a very inquisitive person, so I have a few more questions...

6. Do you get frequent nausea and loss of appetite with your MC?

7. What types of food are safest to eat right now since I'm not recieving any treatment yet and having symptoms of diarrhea/cramping, especially in the middle of the night?

8. Do you take probiotics? If so, what type of probiotic do you take?

9. What time of the day is worst for your MC?

I have been reading through the forum gaining a ton of helpful information. Thank you for all of your helpful feedback.

[Whyclef]

Tex -

I've been on Paxil since September 2008 after I got sick with food posioning, the entire situation made me very anxious so I was placed on a 20mg dose. The dose has gradually been reduced over time, but never completely gone due to Paxil's terrible withdrawal symptoms. A liquid dose was ordered for the taper but it is a very slow process.

[tex]

6. Do you get frequent nausea and loss of appetite with your MC?

Roughly a third of us have nausea/vomiting problems. I am one who had regular problems with that, during my reaction cycles.

7. What types of food are safest to eat right now since I'm not recieving any treatment yet and having symptoms of diarrhea/cramping, especially in the middle of the night?

All but a handful of us are sensitive to gluten and casein, (the primary protein in all dairy products), and about half of us are sensitive to soy and most legumes. Virtually all of us have to minimize fiber in the diet, because it irritates the gut, makes the D worse, and tends to perpetuate the reactions and prevent healing. Many of us also have to minimize sugar in the diet, and almost all of us react adversely to artificial sweeteners.

8. Do you take probiotics? If so, what type of probiotic do you take?

I don't. Probiotics are a very individual item. If you're going to use a probiotic, you have to find one that suits your system, otherwise it may just make your symptoms worse. Only a handful of us have been able to find a probiotic that actually seems to provide significant benefits. In theory, they are a great idea - in the real world, not so much, because we probably need a very customized probiotic blend, that isn't available.

That said, probiotics are always a good idea, anytime we have to take an antibiotic, in order to prevent the development of a C. diff infection while we're in a vulnerable situation.

9. What time of the day is worst for your MC?

Most of us find the symptoms to be more debilitating in the mornings. Afternoons and evenings are usually better.

The time frame for your Paxil treatment makes it a prime suspect for the origins of your MC, and it's possible that you may not be able to achieve stable remission as long as you are taking it. Statins can also cause MC, but Welchol sidesteps that issue, as far as I am aware.

Methyl cellulose, (Citrucel), is a synthetic, indigestible fiber. Trust me, for anyone with MC, methyl cellulose is not our friend. One of the primary uses of methyl cellulose is as a variable viscosity personal lubricant - it's the main ingredient in K-Y Jelly. That's not something that you need in your intestines, when you're dealing with uncontrollable diarrhea. For those who have constipation-predominant MC, it might be a viable option, but in general, it's bad news for most of us with diarrhea-predominant MC.

You're most welcome,
Tex

[Lesley]

Whycleff,

I also had nausea and loss of appetite, and weight loss.
I have cramps and shooting pains in my gut very often, and am rarely comfortable. I have predominantly C, and am constantly fighting with it. I never feel as if I have evacuated completely.

I am always more debilitated in the late afternoon and evenings, when I get attacks of fatigue so bad that I can barely move a muscle fiber. I feel as though I am dying of exhaustion and pain.
But when I wake up I have really bad attacks of pain.

If I eat a trace amount of anything that disagrees with me I either get a lot of pain, bloating and gas (vegetables, some grains), or fire hose diarrhea (gluten, dairy, poultry as far as I know) which resolves into C after a few hours, but is followed by 2-3 days of discomfort. I don't always know what has done it, although I am eating a very limited number of foods right now.
I have a constant battle with fiber because of the C, so I never know what I can eat.

What I CAN tell you is to stop eating gluten, dairy, casien, eggs and soy. Cut out all nuts and seeds. Pare your food down to the bare essentials. Meat, potatoes, rice.
I was eating chicken and rice for a few weeks, with no relief, then discovered that I am sensitive to both!
So I moved to (grass fed!) lamb, beef, some fish, potatoes, and virtually lived on it for a bit till the diarrhea settled down. Then I started experimenting.
Every time I begin to have diarrhea I go back to square one. Meat (lamb and beef) and potatoes for me. For others it's chicken and rice. Tex ate pork and potatoes.

You need a LOT of protein for healing, so concentrate on that.

I have switched to grass fed meat because of the nutritional content. There is a lot of research on one's ability to survive on grass fed meat alone. It's more expensive but it's worth it, to me at least.

Many members swear by the paleo diet, which consists of ONLY protein in the form of meat and fish, seeds, fruits, vegetables and NO gluten or grains of any sort.

I have an added problem - terrible GERD which I can only control by sucking on candy, so I am getting way too much sugar. I am trying to cut it down as much as possible, only sucking on it when the GERD gets too much for me. Sugar is not good, but it's better than antacids.

I did the Enterolab tests, and am glad I did. I got a starting point for the foods that are really problematic, and have gone from there.

I am better, but I am far from remission. Still, there is light at the end of the tunnel - I hope.

[draperygoddess]

Whycleff,

Welcome to our little family! This is the best place to get better! Hope you'll take some time and poke around, read up--you'll learn alot!

If your MC was caused by the Paxil, that might actually be a good thing--if you can get off it, you should see an improvement pretty quickly. I strongly suspect Zoloft was behind my symptoms, and a combination of GF diet and getting off the Zoloft got me into remission pretty quickly. Of course, I know it's difficult to taper off any medication with severe side effect, but if diet alone doesn't work, it would be worth a try!

Hopefully you will be one with few food intolerances, which makes it much easier to make the changes necessary to be healthy again. Rice and chicken are still my best friends! Best of luck and keep us posted!

[coryhub]

whyclef,
welcome home! I'm glad you found us. My first colonoscopy only looked for polyps, ulcers and inflammation. On the second one, the doctor took biopsies and examined them under a microscope and microscopic colitis was diagnosed. I had been having 10+ BM's a day. At first, I ate a lot of chicken broth, mashed potatoes, jello, applesauce, white rice, and white bread toasted to settle me. Then I found this site and cut out gluten. That has been a great benefit to me. In the past two years, I have only needed medication (Entocort EC) twice. Once for 6 weeks and once for only ten days to settle a flare up. Thanks to this site and the wise people here I'm learning to live with this disease as best I can on any given day under any given set of circumstances. You are not alone, we are all here to share the ups and downs of living with this odd, uncharted gut problem.

[brandy]

Hi Whyclef,

6. For me I found the following foods helpful during flare. Grocery store rotisserie chicken w/ no skin (not the best choice b/c of what they inject in them but I'm single and needed something easy. Rice, cooked green beans, cooked carrots, nectarine peeled sliced and then microwaved for about a minute. I ate this regimen for about 8 weeks during flare. Once I started on this regimen D went from 12 times per day and night to only once or twice in a.m. Also cramps went away. Find what works for you it is a little different for everyone. Drink a lot of water. Also a 30 year old male will need a lot of protein to heal. To explain I'm a 50 year old female and I was eating a rotisserie chicken every day to every day and a half. A 30 year old male will need more protein. Although you have no appetite force yourself to eat. You will need the calories to heal. I had to eat about every 2 hours to stop the weight loss. Also STAY AWAY FROM SPORTS DRINKS. Everyone will be telling you to drink sports drinks....they have two many harsh ingredients....no one on this site as had any good experiences with sports drinks. To recap find some foods that work for you, have the same thing every day for weeks on end, and stay away from the things Tex mentioned.

8. Probiotics are a mixed bag. For me they made things much worse during flare. i.e. I would have D after probiotics. I stopped all supplements, all vitamins during my 8 week flare.

9. Once I simplified my diet only had D in a.m. once or twice. Prior to that yes had D during the evening.

Also....consider yoga to help with anxiety. My yoga classes typically have about 5 men in them so it is not just for women.

Hope this helps. I had dramatic improvements in 3 months. Brandy

[carolm]

HI Whyclef, you have definitely come to the right place. People here are knowledgible, know the research, and are very willing to share what they know.

6. Do you get frequent nausea and loss of appetite with your MC?

I have to chime in on this one. The nausea was HUGE for me... absolutely debilitating and worse than the lower GI symptoms I was having. Dry heaves were common. It literally kept me down in bed. It was present first thing in the morning and didn't resolve itself until about noon/midday, on an average day. My MC is C predominant and D has been rare for me. I am fairly sure the nausea occurs because of the inflammation in my gut.

7. What types of food are safest to eat right now since I'm not receiving any treatment yet and having symptoms of diarrhea/cramping, especially in the middle of the night?

Like others here, since July I have been eating a mostly low fiber, no caffeine, low acid, low sugar, and low fat diet. Baked chicken, white rice, potatoes, chicken broth, and green beans primarily. I also rotate my food so if I eat rice at noon I'll eat potatoes at supper, just so nothing has a chance to tax my system. Lately I've added lean ground beef. I am gluten free, and I'm avoiding dairy/casein and soy.
I was diagnosed in August and have lost 24 pounds to date. The first 12 came off extremely fast.
Cramping has also been a problem for me. After I started Entocort it persisted in that I would have about 1 day a week where I had horrid cramps for a 24 hour period. Finally I was prescribed Hyoscyamine which has helped, but it's fairly sedating so it's really only practical to take when you are not going to be driving. However, cramping is also a side effect of Dexilant, an acid reducer I was taking. I've been able to get off the Dexilant and I will be off of Entocort soon and the cramps do seem to be easing up.

8. Do you take probiotics? If so, what type of probiotic do you take?

I tried probiotics for one day and the results were not good. I felt they were irritating my already aggravated gut. This was before I had my diagnosis.

9. What time of the day is worst for your MC?

Without a doubt, mornings were (and still are) the worst. It doesn't seem very fair to go to bed feeling good and wake up too nauseous to move.. but that's what I was going through. And I was genuinely scared I would not be able to work but so far everyone has been patient with me and I am improving to the point that I no longer worry about not getting through the day. I still lack stamina, in part because I lost so much muscle in the rapid weight loss I experienced.

So as you can see you truly are not alone. You will find everyone here is willing to share their experiences. Who better to learn from than others living with the same condition?

Carol

[Sharaine]

Hi Whyclef,

Welcome to our family! We're glad you found us.

I'm one of those who had D up to 25-30 times a day. This went on for 5 weeks before I was finally diagnosed with MC/CC. Entocort helped me a great deal.

I have focused mostly on chicken, fish and chicken soup for the last 7 months. I do venture to add on salsa sometimes and do eat cuties (little tangerines). Applesauce has been my friend, as well as baked, boiled and mashed potatoes.

I hope your find this information helpful.

Welcome, again!

Sharaine

[Zizzle]

I've been on Paxil since September 2008 after I got sick with food posioning

I might suspect the food poisoning more than the Paxil as the origin of your MC. Did you get a stool culture to ID which bacteria it was?
Regarding probiotics, I had terrible results on multi-strain varieties, but excellent results with Culturelle. I'm dairy intolerant and many probiotics are made with dairy. Culturelle is dairy-free. But how you react to probiotics is an individual matter based on your specific mix of gut bacteria and immune response. There are theories that the immune system attacks your resident gut bacteria in MC. Any new ones, although "beneficial," may be deemed a foe by your immune system.

[JudyRN]

Whyclef,
My story sounds very similar to yours - right down to the polyp which was precancerous (mine was a very aggressive precancer). If not for the mc my doc said I would have had colon cancer by the age of 50, but it caused me to have the colonoscopies early. They missed the mc on 2 previous colonoscopies. I got very sick in 2004 on a trip to Brazil after eating something that had been sitting out in the sun - that is my best guess. Some things I have learned - Pacific chicken broth has no gluten and is organic. I don't have a reaction when I use it and I usually do have a reaction with other boxed broth. I usually put some rice noodles in it and some organic chicken I have precooked. That's one of the few things that helps me feel like I have had a full meal. Sometimes I put a little of it on a potato when I am really not feeling well and it helps. Snyders makes gluten free pretzel sticks. That is a staple for me. I am a homecare nurse and when I am on the road that seems to keep me full and keeps me from getting sick. Also, if you can tolerated fats - Fleischman's unsalted margarine does not have any lactose in it, sometimes I can handle a small amt of that on a potato. This is not an easy process. It feels like one false move and bam you've eaten the wrong thing, but as I move along I am learning. I am especially thankful to have found this site with everyone elses experiences. I hope you find some more answers in your search.