Please help me, I'm struggling to want to continue….

[MarthaE]

I am new to this forum and don't even know If I'm doing this post right. I was diagnosed with microscopic collagenous colitis 5 months ago after having survived brain surgery. The doctor put me on entocort which helped me get more formed movements but the intense bloating cramping disconnected feeling acne hair loss lack of a period and having already had bone loss massive mood swings just feels like too much to handle. I am in a flare again and have tapered myself down to one pill a day but it doesn't help much as I easily go just liquid 15 times a day. My stomach sounds like a volcano and I feel like I've completely lost my identity. I was recently sent to the hospital with dehydration and they gave me a bag of fluids and told me to try colestipol. I did and it didn't stop the rhea. I explained to my doctor that I didn't want to go back up on the entocort because of how it makes me feel and expressed that I'm suicidal and he offered nothing. Spent maybe 2 mins with me. I saw another MD today and she told me she couldn't work with me if I was working with an herbalist or other doctors and just dismissed me after I spent so much time filling out all the forms of my long complicated medical history. I just thought I was free as a bird full of gratitude after the success of having my brain tumor removed and it all came crashing down with the mcc. Trying to get a blood test done to check for food allergies soon. Everything bothers me and i don't even drink much water because I end up in the bathroom. Don't know what to do and am so sad. Not sure how to get through this and I'm just so tired. Any advice? Greatly appreciate the forum and I just pray for some hope. No doctor has offered me any. Just eat whatever you want he said. What a cruel joke it feels. m

[Pat]

Martha,

You have come to right place! And you must hang on! Tex and others better at giving advice will respond soon. Diet is huge with MC. Blood tests for food intolerances generally do not help but there are stool tests from Enterolab that do. I am IgA deficient so they do not help me but most on here do find that they help!!! You can order them by yourself, but I think if your doctor orders them your insurance may help. Most have to eat gluten free, dairy free, and soy free. I am so sorry that you have MC and of course that you had to have brain surgery. How scary! Order Tex's book. It is chock full of info. Look in the upper right hand corner of this page.

I think you need a hug!


Pat

[MarthaE]

Thank you very much

[Heady]

Martha
I started on this forum April 1/2014... The best thing I have ever done for myself. It is the wealth of information I needed when my Gastroenterologist failed me. Everyone here has experienced what you are going thru with colitis. They are here to help. It is great for us newbies to have this help when many of us are at our wits end. Hang on girl....your future is looking brighter already. I too had WD(watery diarrhea) that started last oct. 10-15X/day. I made sure to drink 1.5L of room temp water daily to keep hydrated. I cut a huge amount out of my diet immediately upon finding this site and am now seeing improvement.
You can do it too.
There is hope. Don't give up!
Thoughts and prayers coming your way.

[tex]

Hi Martha,

Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they have it. This disease can be very isolating and it can make us feel lonely and hopeless. But we're not alone here, and as you will see from the success stories here, there are plenty of reasons for hope.

Many of us here have had the same problems of not being able to get any help from our GI specialists (including me). Rather than to just give up and suffer, we come here to learn from each other how to control the symptoms of the disease, so that we can get our life back.

As Pat said, the blood tests are not helpful for detecting food sensitivities associated with MC. The only tests that work reliably are the stool tests offered by EnteroLab. But you will probably see a big improvement in the way you feel if you will totally avoid all sources of gluten (wheat, rye, barley, and oats), and all dairy products. You can fine tune your diet later, but to begin with, gluten is the main problem, and getting all traces of it out of our diet is the main key to getting started on the road to recovery from the symptoms of MC.

Again, welcome aboard, and please feel free to ask anything. As Heady pointed out, most of us have felt just as hopeless as you are feeling, and we were just as sick as you are, at one time, but we're here to tell you that we're living proof that you can get your life back from this disease, regardless of what your doctors might have told you.

Tex

[MarthaE]

My goodness, thanks for the kind replies. I am disappointed that the blood test wouldn't be accurate for testing for my food allergies :( Stool tests from Entrolab, any other tests you recommend I try? I just want to try to get a handle on this on as little steroids as possible. Should I not bother with the blood tests? The nutritionist said it would check for 150 different foods. Does it not work? I have microscopic collagenous colitis, I pray remission is possible. Everything just sounds bleak its with mcc, so rare etc. Please excuse my excessive violin playing. Greatly appreciate your kindness and advice.

[Gabes-Apg]

Martha
sorry your MC journey has been what it has....
I wish i could offer a quick fix, or guaranteed to work solution, unfortunately that is not the case.

If you start taking Vit D3, this will help with the both Gut and the Depression/anxiety.
if you can afford it, go sublingual, a high daily dose for 6 weeks will help alot

Remove gluten from your diet. this sounds overwhelming at first, but it is dooable. There are lots of good quality gluten free products such as cereals, breads, pasta.

to help settle the inflammation in your gut, try plain well cooked meals minimise use of dairy products.
Admittedly, they are not meals you will see on the front page of magazines or cookbooks. It may feel like you are eating convict food! But, it is so worth it, your body will heal faster.
rice, chicken mince, 1 or 2 well cooked vegetables.
small serves of banana, small serves of apple puree.

Please be assured you are not alone, you are not the first to have a really rough time when MC is super active. Some have had chronic symptoms for years. It just takes a bit of planning, patience and tenacity.

healing hugs
xo

[humbird753]

Hi Martha,

I am so glad you found us! WELCOME

When I was at my worst, I was in the bathroom anywhere between 20 and 30 times a day, experiencing major fatigue, foggy brain, balance issues, and also feeling hopeless. Finding this internet family was god sent for me. It was only then I heard about going gluten free, dairy free and soy free. I started with eliminating those three (most common food intolerances). I eventually had Enterlob testing and found I was definitely intolerant to gluten and dairy. I (like so many others) did not get the information I needed from my GI specialist.

I have now been GF, DF and SF for about 2 years. I say only about 2 years because it took me some time before I realized how many foods it was hidden in. I made it easier for myself by staying with whole foods (meats, rice, sweet potatoes, well cooked veggies). Udi's bread is very good toasted or even thawed out for a sandwich. The improvements were already noticeable at several weeks, but have continued to get better all the time. I am only in the bathroom once a day (rarely, but sometimes twice). I have a lot more energy, and am overall feeling well.

You can't give up now, you've just found the one source (IMHO) that will help you to get your life back. You've already survived brain surgery. It may appear hopeless now, but in a short time by at least eliminating gluten you will begin to notice you are making fewer trips to the bathroom.

You are in my prayers.






Paula

[MarthaE]

Thank you Gabes. While I was taking Entocort I was eating bone broth soup daily, drinking little bits of aloe juice twice a day. Eating one banana, well cooked kale and well cooked spinach, well cooked mushrooms, squash puree, coconut manna, homemade sprouted coconut cashew milk, so it wouldn't contain guar gum or carrageen, with brown rice protein powder in am , shredded chicken for dinner and gluten free sprouted brown rice tortillas with sprouted organic pistachio butter in the afternoon. I am back to a banana, probiotics slippery elm. I feel like I'm allergic to everything. I guess I thought the bone broth would heal me. They checked me for celiac and I don't have it but maybe I'm just gluten sensitive. Haven't eaten bread in over four years. I was on a fairly strict candida diet for four years. I tapered down off the entocort too soon I suppose but I just can't stand how it makes me feel. I wish they could give me other options. I think the rhea is better tho distressing I'm Sorry for tmi, much love thanks for the support.

[MarthaE]

Thank you Paula

[Gabes-Apg]

90% of people here do not get a positive reading to the Celiac Blood test, yet the MC indicators have let them know that they can't digest Gluten!
while the gut is super inflammed it is way more sensitive.

Healing can take a couple of months, or a couple of years!!
Healing only happens once all major triggers are removed.
Triggers can be more than foods etc, it can be Stress, Environmental factors, Medications etc.

There are lots of other options to help you through the current major flare

Medication - there are numerous other medication protocols that can be done to try and get things a bit more settled, less D, so you can focus on figuring out your eating plan.
some have used Pepto Bismal
some have used Questran light
some have used 8-10 imodium per day
some have used LDN
some have used Imuran
some have used Elevil.
some have used small dosage of Entocort continually

Some have tried a few of these before they found what worked best for them....

Are you taking an SSRI or NSAID medication??

Eating one banana, well cooked kale and well cooked spinach, well cooked mushrooms, squash puree, coconut manna, homemade sprouted coconut cashew milk, so it wouldn't contain guar gum or carrageen, with brown rice protein powder in am

some of the ingredients above have been an issue for MC'ers, the ones that have caused a few issues are Mushrooms, any nut/legume,
Aloe juice might have a bit too much fibre. And only a few have had good results via Pro-Biotics.
Most of the natural/herbal treatment protocols used for IBS and other IBD's like Crohns, dont seem to work for MC.

on this forum there is no TMI per say!
this is the place you can ask questions about poop, poop colour, poop smell, poop contents etc! and talk about gas and other topics relative to digestion.

take a few deep breaths.
There are lots of sincere wonderful people here that can help you.

[MarthaE]

Thanks Gabes. Guess I will have to wait and just try the stool tests. Seems difficult to find a holistic dr. that can treat this mcc. I'm ready for the fecal transplants to be FDA approved. I would try anything to help myself. Again, thank you

[tex]

Should I not bother with the blood tests? The nutritionist said it would check for 150 different foods. Does it not work?

Some of the blood tests are useful for classic food allergies, but we don't usually have classic food allergies with MC. At least that's not what's causing the inflammation in our intestines. Allergic reactions are IgE-based reactions, and that's what most blood tests look for.

With inflammatory bowel disease, we have a different type of immune system reaction. The reactions that we have with MC are IgA-based, and the IgA antibodies are found in the stool (because the reactions occur in the intestines, not in the blood). The EnteroLab tests are specifically designed to detect those food reactions.

There's one blood test that is sometimes helpful, and it's known as mediator release testing (MRT). But the MRT is best used after the EnteroLab tests, because it almost always misses the main food problems, such as gluten and dairy. People who aren't able to reach complete remission after removing from their diet the food sensitivities determined by the EnteroLab tests, sometimes use the MRT to track down the additional foods that might be causing problems.

I have microscopic collagenous colitis, I pray remission is possible. Everything just sounds bleak its with mcc, so rare etc.

The reason why most doctors are unable to properly treat this disease is because they don't understand it. They don't understand it because they consider it to be a rare disease, so they don't learn about it in med school, and they don't learn how to treat it after they leave med school, either. They don't recognize food sensitivities as being the main reason why the inflammation continues to be perpetuated, and allergists don't understand how to test for food sensitivities in the gut (because they don't learn about that in med school, either).

And the really sad thing is that the disease is not even rare, it's actually much more common than celiac disease, Crohn's disease and ulcerative colitis, all added together. But they continue to call it a rare disease, because they figure that as long as everyone thinks that it is rare, then it is OK for them to not understand it. So it's no wonder that doctors don't know how to treat MC — they're lost right from the start.

Incidentally, the fecal transplants will not resolve MC — numerous members here have tried that, without any success. Those transplants work for treating C. diff infections, but they will not work for MC.

Tex

[Gabes-Apg]

The stool tests may give you some hints/info. There are some that they did not answer all the questions.

The current medical systems of our countries are not set up to support patients manage these ongoing type of inflammation/autoimmune conditions.
for the rare times there are any good holistic practitioner?drs, they are generally expensive and has a long waiting list.

There are some that have tried fecal transplants, so far i dont believe we have any success stories for that protocol (happy to be corrected if i am wrong)
some of the misgivings are, the donor may have to be gluten free dairy free, any other major trigger free for a period of time before collection.
The health of the gut is linked to a myriad of things. If you put so called 'good poop' in the bottom, you gotta make sure what is coming from the mouth is also good stuff, things like; Teeth and Gum health, Vit D levels, Inflammation levels, histamine/Mast Cell activity for starters....

Majority of the success stories amongst this group, are when people do informed self management.
- Figure out what meds help (and eliminate the ones that hinder)
- Manage all the health issues (majority of the group have multiple conditions)
- figure out their eating and lifestyle plan that works with your budget, your family, your work etc
- Find what supplements work and optimise wellness
- Give healing the time it needs

[MarthaE]

ok scared pooping mucus today :( don't understand, before its just been brown water and now mucus :( sorry