Just diagnosed...

[GMAK]

Hello, I had a colonoscopy on Monday & I just received the results of my biopsy yesterday & have MC.

A little history about me...it all started a year and a half ago. I was running to the bathroom up to 10 times a day for about 6 months & passing a lot of blood. Unfortunately I had no insurance at the time & none of the free clinics were any help. I did not have the cash to pay out of pocket. Then as suddenly as it started it went away. Then 6 months after it stopped it started again with a vengeance. I started running to the bathroom up to 20 times a day. I could not even get through a meal. I was missing work all the time & my stomach was in constant pain. I still had no insurance. I finally found a clinic & a nurse practioner that listened to my symptoms and prescribed a high dose of prednisone & sulfazine for about 2 months. It immediately helped my symptoms. I had a lot of other symptoms from the steroid but it was better than the alternative. That was about 5 months ago. Since then I got married and now have insurance so I decided to try and get diagnosed before it came back again. I am still having stomach pain and abnormal bowel habits, but nothing as bad as it was before. I went to the GI and he scheduled my colonoscopy & now here I am. I was convinced it was crohns or ulcerative colitis & in all my research had never heard of MC.

I am relieved to have a diagnosis and not have to wonder or worry any more. The only thing I am not to pleased with is my Gi did not call me with the results just someone from his office & all she would tell me is to look on the internet for information. She told me this was something that was just an infection and with medicine would go away and not come back. From what I have read so far this is not true? The have prescribed Endocort but I have not picked it up yet. The other symptom since all this has started is a lot of joint pain mainly in my knees and hips. I am only 30 and feel much older than I think I should. Does the joint pain go with this? Also the research I have found online say MC frequently goes with other autoimmune disorders. Should I be tested for other things as well?

Any information or stories are greatly appreciated. I am not happy to have MC, but relieved that at last I know what it is and can figure out how to live with it and lead a healthier life.

Thanks,

GMak

[ant]

Dear GMak,

from Hong Kong. I am sure others will be along shortly to welcome you. It seems you have already started reading the posts. There is more information about MC here then anywhere else in the world. It is not (usually) a short term disease, so your Doc is wrong about that. Entocort is probably the best medicine (I was on it for just over a year), but research suggests that without removing underlying causes (gluten, dairy and, for many, soy and, for some, other foods like peas beans and nightshades) you will not go into lasting remission. Also irritants like fiber will probably need to be avoided until your gut heals, which may take up to a year or more.

Your earlier history of passing blood would have suggested Crohns or UC. I believe that these IBD and celiac or all more related then many doctors think.

Again welcome, we are here to help, support and answer ANY questions.

All best in your journey to remission, ant

[tex]

Hi GMak,

Welcome to our internet family. As you have discovered, many GI docs do not understand this disease, and they are not very effective at treating it. As Ant mentioned, MC is not "just an infection" that can be treated, and will go away. It can be caused by an infection, but the disease itself, once triggered, is forever. The symptoms can be controlled, but without constant treatment or vigilance, it will return with a vengeance.

Your initial "bout" was probably due to a bacterial infection. Since it resulted in blood in the stool, the bacterium involved may have been C. diff, Salmonella, Shigella, E. Coli 0157, Campylobacter, or possibly others. Since it went untreated for so long, (apparently it ran it's course, and resolved without intervention), this may have set the stage for the development of MC.

MC does not cause bleeding, so if you are still passing blood, then you either still have a C. diff infection, (or an infection from some other bacterium), or you also have Crohn's or UC.

Does the joint pain go with this? Also the research I have found online say MC frequently goes with other autoimmune disorders. Should I be tested for other things as well?

Yes, the joint pain is due to the MC. MC is associated with the leaky gut syndrome, (LGS), and with LGS, partially-digested amino acid chains, (peptides), are allowed to escape into the blood stream, due to a failure of the tight junctions in the epithelium of the intestines, (they open too wide, and remain open when they shouldn't, thus allowing medium-length polymer chains of amino acids to pass into the bloodstream. These peptides are subsequently deposited in joints, and other organs, where they can cause arthritic-like pain, since they shouldn't be there). As to your question about whether you should be tested for other autoimmune diseases - not in my opinion. Most of us find that if we control our MC symptoms, the other issues will go away, (provided that gluten and dairy are eliminated from the diet). IOW, if you control your MC symptoms, then the LGS will also be controlled, and any other autoimmune symptoms that you may be experiencing, will very likely disappear, also.

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

Tex (Wayne)

[GMAK]

I really appreciate the insight & knowledge. I have already learned so much from this group. It makes me feel much more at ease knowing there are people out there that have been through this and have found ways to make it better.

[Gabes-Apg]

GMAK

gday from australia



I found this site the day i was diagnosed (thank the angels for that) the wisdom and advice given by the wonderful people on this site have allowed me to transition to life with MC.

I am not using any meds, i am using diet and naturalth therapy as my main management tools.
and as tex said in his first paragraph there are only a rare few GI specialists and GPs that understand this condition, a key element to success is self management.

in finding this forum, not only is there relief in finding people that have been through this, but it is the place you can ask questions about anything (poop gas etc) and discuss your good days and bad days. it helps with the acceptance of MC in your life.

good luck with your research etc

take care

Gabes

[GMAK]

The whole diet management seems a little overwhelming at the moment. It seems like there are so many things that make the condition worse. Trying to figure out what IS ok to eat and having the will power to change will be the challenge. My eating choices are pretty bad so this will be a whole lifestyle change for me. One step at a time, I suppose.

Thanks for the response!

Gina

[Joefnh]

Hi Gina. It can seem overwhelming at first. The dietary side of this really is the most important part of treating MC. There are 2 ways of determining food sensitivities; the first would be by trial and error while keeping a food diary, and the second would be through testing with Enterolab. To help you think about this just about all of us are sensitive to gluten (wheat) and about half are sensitive to soy and also dairy products.

I started by eliminating all gluten, soy and dairy then once my symptoms were somewhat stable, tried adding a bit of soy and noted the results and then a bit of dairy and then a bit of wheat etc. It really is a process of elimination, but I think you will fond that the base ingredients of wheat soy and dairy is the best place to start. For many of us going back to a paleo like diet really has helped. In my case that consists of a few meats (chicken, lamb and fish) and a few well cooked vegetables (carrots, pumpkin, peas) served with mostly white rice and occasionally a white or sweet potato.

Initially this can be a lot to take in but it really is pretty easy to mange once you know what your sensitivities are. Take it slowly and keep the diet simple. Remember the more processed foods that you keep in your diet the harder it will be know exactly what ingredient it contains. Even with the labeling laws things like gluten can 'hide' behind other less obvious names. I will have to look around again, but there is a good list of the other ingredient names on this site to be cautious of. This of course is easier if you stick to whole foods that you prepare yourself.

Thanks for posting Gina and feel free to use this site to ask any question (very little is 'too gross' with this disease) and of course an occasional venting is encouraged. This can be frustrating at times.

--Joe

[tex]

Gina,

You are quite correct - controlling this disease IS a big deal, and getting our lives back, requires major lifestyle changes for all of us. For a while, we have to just take life one day at a time, until we are able to get to a point where we feel more "in control", and then we can work out the remaining details in our treatment program. It can take up to a year of more for our intestines to heal from the damage caused by the disease, so please don't be discouraged by minor setbacks along the way. We all suffer setbacks, on our journey to remission, but patience and perseverance eventually bring the results that we seek.

Tex

[Zizzle]

Hi Gina and welcome!

This made me laugh:

The only thing I am not to pleased with is my Gi did not call me with the results just someone from his office & all should would tell me is to look on the internet for information.
GMak

I too got a call from the medical assistant (MA) at my GI's office. She asked for a pharmacy number. I said, "Why?"
She said: "Because I need to call in a prescription for you"
Me: "For what?"
MA: "Asacol, the doctor wants you to take 8 pills/day".
Me: "For what?"
MA: "You have microscopic colitis"
Me: "Wasn't the doctor going to call and tell me?"
Nurse: "You can talk about it with her during your follow-up appointment in 2 weeks"
NICE.
I declined the Asacol.

Regarding the joint pain, I was also experiencing achy pain in my hips. I felt like I needed to stretch my hip flexors in front, but tons of stretching didn't help. Sitting at work all day didn't help matters, and sometimes I couldn't straighten up right away when I stood up. I felt creaky. I started the GF/Yeast Free diet (and mostly dairy and soy free) 3 months ago and the hip pains went away very quickly.

I have several circulating autoantibodies, but have not been diagnosed with an autoimmune disease. My uninformed doctors assure me the autoantibodies are "TOTALLY UNRELATED" to my LC. I think otherwise, but am always on the lookout for some other disease to develop. I'm hoping the GF diet will stop the progression of whatever it might be!

If you can, ask your doctor to run an ANA screen and look for rheumatoid factor for starters. You may want to get your thyroid levels checked and your Vitamin D level too. Low vitamin D is being linked to many autoimmune diseases.

Good luck unraveling your health mystery!

[GMAK]

Thank you everyone for your responses. It is alot to take in but you guys are reassuring me I can do it!
I think I will do some reading this weekend on the diet plans & types of food that are free of all these things.

Zizzle, yeah I don't understand the just sending out a script with no understanding of what it is for. My doc did not even schedule a follow up. I'm thinking maybe I should find a different GI doc that is more receptive to questions! After my colonoscopy he spoke to my husband for about 10 seconds and all he said was I was fine. Didn't even let him ask questions then. We pay far too much money for insurance and this procedure to be unhappy with how he handles my medical care.

Your joint issues sound just like mine. I'm glad the diet helps with that!

Thanks again everyone!

[Zizzle]

My GI only spent about 1 minute with me and my husband after the colonoscopy. During my follow-up appt, I came with a list of 10 questions and she was really annoyed to see them. She still only spent about 15 minutes with me, and fed me a bunch of outdated or simply wrong information. She even REFUSED to test me for celiac disease, which in hindsight was clearly negligent. I was disgusted when I obtained a copy of the report she sent to my PCP, in which she highlighted her answering all my LONG LIST of questions. SO SORRY!! If it weren't for the biopsy results she would have surely sent me packing with an IBS label caused by my phychotic perseverance and need to ask questions!

Needless to say, I will not be going back to her. I'm seeing a celiac specialist on Tuesday. You should find a better doctor too!! One that understands MC can be debilitating (not just a harmless nuisance disease), believes in the role of diet, and can understand autoimmune issues and their relationship to your gut. You may never find an MD who can do that. Perhaps look for a Naturopathic or holistic medical practice. Or just use your MDs to order tests and prescriptions and be your own disease detective.

After all, YOU are in charge of your health!

[tex]

Zizzle - you sizzle!

Great post. I agree that it's usually a pretty safe bet that when a specialist either hides from the patient, following a procedure, or becomes annoyed when the patient asks "hard" questions at the followup, it's a pretty safe bet that the "expert" doesn't know enough about the disease to carry on an intelligent conversation about it. Probably, a few of them avoid a followup appointment in order to preempt the possibility of being embarrassed by questions they cannot answer.

As a general rule, it doesn't take most members here more than just a few days to learn more about the disease, than the GI doc who diagnosed them knows about it. The medical schools are simply not providing the training that is needed for properly understanding and treating this disease.

Tex

[Zizzle]

LOL! Thanks Tex!

[natythingycolbery]

Hi Gmak (and everyone here),

I feel really lucky living in the UK after reading some of your stories about how you were diagnosed! I mean, people blast the NHS here for waiting times and being bad at what they are doing, but I went from first having symptoms and seeing my GP, to being refered to the hospital, having the Flexible Sigmoidoscopy and eventually being diagnosed took about 8 weeks (It might be less than that, i can't remember)

And when I had the procedure at the hospital my GI took the time to ask me if I had any questions before and after! As well as giving me the outlook he thought it was, then when I had the follow up apppointment less than a fortnight later (although I was ill with a cold!!!!) he was really good at explaining things and would have probably taken the time to answer the questions I had.

There was a point to me saying the above but i appear to have lost my brain temporarily. if it comes back you will get the point!

[tex]

Naty,

You have a good point. Many specialists here are so busy making money, that they don't have time to devote to consulting with their patients. That's probably why they're called "Specialists" in this country, and "Consultants" in many other parts of the world.

Tex