MICROSCOPIC COLITIS SUPPORT

I have never been in a support group before. Recently diagnosed with LC after a year of uncertainty.
I really had no idea how life altering this disease can be... still trying to learn all I can!
Some people say food has nothing to do with it. Others say food has a lot to do with it.
Steroids have cut the frequent toilet trips in down significantly.
Some days are really bad and others are ok.

I am 41 and still wanting to have a baby.

Any advice or suggestions are much appreciated!

Thanks,

Lisa

Hi Lisa,

Welcome to our internet family. Yes, this is definitely a life-altering disease. Contrary to the training that most doctors have had, diet has everything to do with it. There's no cure, but the symptoms can definitely be controlled by carefully avoiding all of the foods that cause the inflammation. If you have any doubts that the disease can be controlled by diet changes, please read some of the member success stories at the link below:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=71

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

Tex

Welcome aboard Lisa.
Only those of us that have this disease can truly understand it, that is the greatest value of a support group, realizing you are not alone on this journey.
When you are newly diagnosed it is normal to be overwhelmed and have a billion questions. Feel free to ask anything you want to, someone on the board will probably be able to answer it.
From what I have read on this board the amount of healing is directly related to identifying and then avoiding problem foods for most of us.
I was on Uceris for 2 months and it helped immediately, but I could still tell when I had eaten something I shouldn't have. It, like other steroids, masks the symptoms, but doesn't heal.
Again welcome....

Hi, Lisa. Welcome to the group although I'm sorry you have to be here. I'm newly diagnosed, 9/13. I am controlling my symptoms by diet alone and I want to keep it that way. I did the Pepto Bismol treatment for 8 weeks as recommended by my GI but since then I haven't taken any meds. It's not easy, but it is doable and it gets easier. You have found a great support group here and I would recommend that you purchase Tex's book. It will answer a lot of questions for you. Good luck on your journey!

Hello, Lisa!

I have controlled my symptoms without the use of drugs. I did Enterolab testing to find out what foods to avoid. Then, I did MRT testing to narrow the scope of offenders! I test every new food once a day, for 4-5 days to see if i react. That's how i've made my safe list of foods to consume.

Your diet should be bland in the beginning.....bone broth, meats, over cooked veggies. Eat small meals. This will give your gut a chance to start healing and to allow the inflammation to reduce.

Stress makes things worse, too.

Get lots of rest!

I know this all sounds easier said than done, but it is truly the way to healing this disease.

Lisa
welcome!!
this group was my first support group, my MC Dx was my 40th birthday present, 4.5 years ago.
The wealth of knowledge shared, the sincere support given by this group of people gave me my life back! and enhanced it 10 fold.

there are a few here that have got their MC 'in control' and have fallen pregnant and breast feed. It is not impossible.

Regardless of the future pregnancy situation, i wont lie to you and say getting MC 'tamed' was easy, it isnt, there is a bit of hard work, change and adjustment, tenacity, patience, research, planning and being organised

Read the topics that are aimed at 'newbies', there is lots of info to digest (pun intended), take your time, and ask questions.

take care

PS - tex's book is like a lonely planet guide to 'MC World'

Lisa,

Welcome to our family, I too am fairly new to this just being diagnosed the first part of June, 2014. I'm waiting on test to narrow down my choices of food. I've learned sooooo much already from everyone here. My husband proudly says, she has studied and read so much she knows more than most drs do about LC. I have and every bit came from this board of wonderful and kind people.

I really feel like I can get a handle on this and live a normal life all due to my family here.

Happy Healing!
Connie

I have no clue what I am doing. I have no clue why I have MC and I have no clue how to explain to anyone what I have, how I need to live with it and how to relate to my Dr. I went to the ER May 25, 2014 because I had been up all night vomiting with severe pain in my gut. The ER Dr did an ultrasound and told me that my gallbladder was thick walled, infected and full of stones and made an appointment for me to see a surgeon within 48 hours to have my gallbladder out. While I was explaining my pain to the surgeon he said the pain was on the wrong side to be the gallbladder and sent me to a GI Dr to see if there was anything else he was going to need to remove when he takes my gallbladder. I went in for an endo and colonoscopy and when I awoke in recovery in intense pain the nurses and Dr all looked scared! The Dr said he could not complete the colonoscopy because he couldn't get the scope through my intestine at the sigmoid, it was so swollen that the scope would not go through so he scheduled me for a colonography (cat scan) but he was able to take biopsies. After 3 weeks waiting for results due to his vacation he informed me that I have polyps in my esophogas, gastritis and MC which he said was "fascinating". I am now 2 weeks after the colonography with no results from that test and an appointment for follow up 9/23/14. He called a prescription into the pharmacy for me which I cannot fill. I do not have insurance and the discounted cost of the steroid is over $1,000 for each month, he prescribed two months for me. I read someone had started taking raw honey which I started right away and have found that it really does help but I am lost without insurance in this medical world. I am grateful for all the information that is being shared here and have a family member who has a gluten free diet as a mentor, I also recognize that I cannot tolerate some dairy and am trying to avoid any foods that I have had problems with in the past (and not knowing why!). I'm scared, my life partner (too old to call him a boyfriend) is scared he'll hurt me physically if he touches me and my kids think they are going to lose me because of the weight I've lost and my lack of energy. Some days are so overwhelming... I have good days and bad days and none of them have a pattern yet. I am sure your all seeing yourselves in this post and I apologize if this is not the appropriate place to say any of this, but I appreciate being able to "get it out"... thank you all... Tlady

Teri,

I'm so sorry for all that you have been through. You finding us is a step in the right direction. This board is a wealth of information and everyone is so willing to help you. You can ask anything and most will jump in to help you. There is a book in the top right hand corner that Tex has written that will answer so many of your questions about this disease. I couldn't take the meds that the Dr. prescribed (sweating profusely). I'm glad now that I didn't take them I have been able to pretty much control the D with just changing my eating habits. You first have to find 3 or 4 foods that you can tolerate and keep eating only those until you start to heal a bit and then you can slowly add more in. Most of us have to go gluten free, soy free and dairy free. Just go slow, eat small meals and keep reading this board.

I'm sure some with more experience than me will chime in and help you. I was just dx in June of this year. There seem to be more and more with this, you are not alone!!!

Hang in there!
Love,
Connie

Hi Teri,

Welcome to our internet family. I'm sorry that everything seems so overwhelming, but this is a complex disease, and most GI specialists know very little about how to properly treat it.

You seem to have the very same problem that I had — a stenosis in the sigmoid colon. IMO, this is caused by a rather rare condition that most GI docs don't seem to be familiar with, known as diverticular colitis. It results in a stenosis of the sigmoid colon in roughly 25 % of cases. This is not necessarily a part of MC, but I am guessing that it typically involves MC in virtually every case, because the pattern of inflammation that is found in diverticular disease involves the same mode of inflammation as MC (namely, an elevated T-cell count).

As Connie has pointed out, you can control your inflammation by diet changes, and with the stenosis, you should definitely avoid all sources of fiber, in order to minimize the risk of a blockage. My GI doc failed to mention that to me, presumably because he didn't know any better.

If you would like to try the medication that your doctor prescribed, we might be able to help you with that. It won't help heal your intestines any faster than the diet changes, and if you don't make the diet changes, when you stop using the medication, the symptoms will return. But the advantage of the medication is that it will help to control your symptoms while the diet is healing your digestive system. IOW, it takes a while for the diet to bring remission, and the medication can make life much more pleasant during that period. I'll send you an email with the details, if you are interested.

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

Tex

Teri,
Welcome. I am so sorry you have gone through this. It is a life changing disease. Some of us can control it through diet alone, others need meds or other methods.
Some of us discover, once the violent diarrhea (D) is over (usually helped by diet) that our disease is dominated by constipation (C). We are usually the ones who battled with C prior to getting the disease. In this case the steroids do not help us, since they cause C.
I have a lot of the steroids (obained from AllDayChemist in India and considerably less than is charged here (drug prices in the US - a different gripe), and have quite a lot I can let you have so you can see if they work for you. Message me if you would like them

Lesley

Support groups are the best. When I get down and feel life has kicked me in the arse, I visit this support group and feel better. We need to feel we're not alone. We are pack animals and need each other. Do y'all agree?

Back when my symptoms started and my GI doc told me that there was nothing wrong with me (it was all in my head), because he failed to take biopsy samples during the colonoscopy, I began to think that I was the only one in the world who had this problem. I had no idea it was MC, because I had never heard of it. After I figured out that the symptoms were connected with certain foods, I googled celiac disease, which led me to Sally's old MC forum (which preceded this one). I didn't have to read but a few posts to realize that those folks were all like me. I knew I had finally found someone else who understood, because they felt just like me. It was like coming home after being lost in the wilderness for a few years.

Looking back, that seems to be the best phrase to describe my futile attempts to get help from the GI department at my local hospital: "lost in the wilderness" — a medical wilderness.

Tex