Worried newbie

[Greengoddess]

I have been lurking on here, somewhat to my shame. Being what is known generically as a public servant, the word public places me at risk of 'whispering campaigns'. However I have worked with many patient groups and I can see what a vast amount of knowledge you have. The medical and research community will eventually and unwillingly realise this. The way they have with cancer patients groups. My own doc is curious despite himself due to there being no patient registries and being interested in publication! Enlightened self interest. My own entry into the world of the "flare" was quite dramatic and didn't turn into a crisis largely because of Wayne's book, my Kindle and my travel stash of cortisone (insect bites) . I travel a lot. We all know what this means....
This flare happened in a undiagnosed situation but with some prior symptoms. For me those have been since I was five. . I was able to make a guess what it was and titrate the dose of steroid I needed to stop the flare. Also to insist that the guy doing the colonoscopy took a biopsy. My FOURTH colonoscopy. Needless to say by the next week I was wrecked from the steroids and the D. I did notice though this strange diurnal ryrhtm to it. Much more severe at night.
Things have kind of gone downhill from there. There are symptoms that seem impossible to relate to MC but are real. Probably the worst being problems across the midline and right hand side with pain radiating into my back. A gastroscope showed some gastritis. Some of these attacks are scary. But episodic. Seemingly no GB problems. Liver function tests pacreastic tests normal. Also my bladder is very over sensitive. Even some times I get a burning sensation in my mouth. Does ANYONE else have these symptoms. My doc says MC can only exist inside the intestine. In addition my blood sugar spiked and then went down while my white count is low! I show negative for coeliac. It is hard sometimes not to believe I don't have a fatal illness. And then there is the itching and burning! Oh I forgot about the previously undiagnosed psoriasis! And it may be responsible for arthritis in one of my toes. All that looks like hypochondriacal hysteria! Is it even possible to have two different AI dies eases? But it seems of all the diseases in all the world I could have had, this one is poorly understood and difficult to talk about. I do not come from the US where you have a patients forum. Some of the lads the Crohns and UC group were helpful though at the beginning. Really what this is is the crossover between gastroenterology and immunology. Which is not well served by silo medicine. Off to the doc to stock up on Entacort for Xmas. The food bit which I dread. Nice to meet you all and thanks for the info. My fingernails have turned into these amazing glossy things due to the VIt D! Maybe if I heard from others I wouldn't metamorphose into a neurotic mess...

[Lilja]

Hello Greengoddess,

You certainly have come to the right place. This board is just fantastic, and a Pandora's Box, full of knowledge you cannot find anywhere else and with warm and caring people, who really want to help and share their experiences. I cannot imagine where I would have been if Internet - and this board - did not exist !

Among other things you mention an undiagnosed psoriasis. I have had psoriasis for more than 40 years, and some years my body was completely covered with shells. When I found this forum, due to my Collagenous Colitis, I quickly understood that I had to completely change my diet.

I now am gluten-, dairy-, soy- and eggfree. After having left out gluten and dairy products for 2-3 of months, all my psoriasis disappeared! I have been on Entocort since June 2014, and hope to go off the medication after a careful taper off, suggested by Tex. Hopefully the diet alone will keep me symptom-free.

I wish you all the best !

PS: Even if you have tested negative for celiac, you may have so called "non-celiac gluten sensitivity" which gives the same symptoms but is nearly impossible to test for. Burning feeling in the mouth, may indicate that you lack B-vitamins. I'm sure Tex will give some more input on the item.

Lilja

[nerdhume]

Welcome to the group.
I had a few years of seeming to be a hypochondriac, many on the group have several AI disorders. Many of those problems will get better or completely disappear as you get your diet under control.
Just keep reading and posting...it will all come together for you.

[Skyward]

Hi Greengoddess- You didn't say if you have tried any diet changes yet... when you said that you dread it- does that mean you are still avoiding changing your diet? I am also newly diagnosed and sadly for me- I had a bad reaction to the Budesonide drug (which already showed great promise in relieving my symptoms in only two days I took it) so I can't take it anymore and I only have diet (and maybe some alternative therapies like meditation or acupuncture- have not tried yet)

There are so many varied symptoms- some of them seem so far away from the gut that it's hard to imagine they are related. My surprise example is that I have struggled with stress incontinence with urine for many years. I have 4 kids and thought it was a result of childbirth and thought that I was just going to have to suffer with it for the rest of my life or have surgery (which I wouldn't ever consider) Within two weeks of changing my diet I noticed I wasn't wetting my pants anymore. I didn't pick up on it right away because I wasn't looking for it and I hadn't connected it as a symptom of whatever it is that is wrong with me. I still haven't seen great improvements with my gut just yet- but it has only been about one month since I took all gluten out of my diet and about two weeks since all dairy.

I also have a strange back pain- it only happens at night and it can cause me a lot of trouble sleeping. I have no back pains during the day out and about, even doing heavy lifting. The pain seems to be located inside my pelvis- not in my spine- but near to the sacrum. I have worried that it might be a kidney infection- but none of the testing has pointed toward anything like that. It's almost feels like the bones of my pelvis came unknit and then got crammed back together just a little off kilter- the pain can be almost paralyzing at times and I have a sense that I have to roll over in order to escape it- but the act of initiating the movement will hurt a lot more- it feels, in my imagination, like the bone plates are grinding- so I have to get psyched up to force myself to roll over. That might give me a short time of relief before I have to move again. I also feel very "creaky" for being a 45 year old woman- if I get down on the floor on my belly- like to read a book to a child- I will really freeze up in my bones and getting back (like an old woman) up is very painful. A few years back when all of this was really starting to snowball- I had a time when I thought I had rheumatoid arthritis- many of my joints were aching, worst was my hips- and I had a very hard time sleeping then. Sadly my Dr. told me to take NSAIDs for that. Recently one of my friends who heard about this suggested that it almost sounds like a tick-borne illness- I had not thought of that- but when I searched this forum I discovered that is a common thread for more than a few people.

There is a lot to learn and share as we try to figure this out with the company and compassion of each other here! So glad you joined us. -Sarah

[tex]

Hello Greengoddess,

Welcome to our Internet family. Looking back, I can see that my mother suffered from the same symptoms that we are dealing with. But back in those days, her generation didn't talk about such things, and so she suffered in silence, never understanding the reasons why she had those problems. And unfortunately her doctors were no help, either. So I can understand your concerns about "whispering campaigns". Many people are still living with the same outdated attitude about normal body functions and diseases that affect the digestive system.

So apparently there are a lot of "black-bottomed pots" out there, who seem to take delight in calling the kettle black. They choose to suffer in silence, so it's not surprising that they would look down on others who are motivated to actually address their issues and resolve them, so that they can get on with their life. But life is too short to worry about those who are not willing to at least try to help themselves, so please don't allow them to dissuade you from doing what you need to do in order to get your life back.

Yes, MC can (and often does) inflame any part of the gastrointestinal tract, from mouth to anus (it is similar to Crohn's disease in this particular respect). And because of the ways that it can attenuate the production of many enzymes and hormones, this disease can have a profound effect on virtually any organ of the body. As the other members who responded mentioned, issues that seem totally unrelated, are often resolved when our MC symptoms are addressed.

Lilja is correct that this disease causes malabsorption problems that eventually lead to not only a vitamin D deficiency, but often a deficiency of certain B vitamins, especially vitamin B-12 and folate. Yes, either a B-12 or a B-9 (folate) deficiency can cause burning, or tingling sensations. Unfortunately, these days most doctors don't seem to recognize the symptoms of vitamin deficiencies, and for some reason or other they seem unaware that people who have an IBD (or any autoimmune disease for that matter) use up those vitamins much faster than "normal" people. So even though lab tests might show that our levels are in the "normal" range, we typically need to take certain vitamin supplements in order to meet our needs. If we don't do that, we may jeopardize our recovery, or at least slow down our recovery.

I can remember feeling (like you) that I was the victim of a rare disease, for which there is no cure (when my doctors were unable to help), and I can remember thinking that as sick as I was, with my body wracked with pain and down to hide and bones, and unable to even think clearly most days, it was only a matter of time before my heart would give out, or I would have a stoke. That was about a dozen years ago. MC can be a very lonesome and very isolating disease — even more so than other similar diseases (mostly because it is so poorly understood by the medical profession). Most doctors (unless they have the disease themselves) have no idea just how debilitating and depressing this disease can be.

But when I finally figured out what was wrong, and figured out how to correct the problem (by diet changes), I was gobsmacked by how logical it all was. Obviously most digestive system problems are due to our diet. Why wouldn't they be? Most lung and respiratory system diseases are caused by breathing polluted air, so it doesn't take a rocket scientist to figure out that digestive system problems would be due to some of the foods that we eat.

After healing for about a half-dozen months, one day I awoke and realized that I felt better than I had felt in at least 20 or 30 years. That was an absolute epiphany. A feeling that can only be truly appreciated by someone who has actually experienced it.

Again, welcome aboard, and please feel free to ask anything. And as you have probably already noticed, unlike the world around us, here on this discussion board, we all understand and appreciate exactly how you feel, because we've felt that way (or currently feel that way) ourselves.

Tex

[Greengoddess]

Thanks to all for the replies. It seems as if the way these disease "travels" in the body is poorly understood. I reckon many of the people diagnosed with IBS and even the co-morbid diverticulosis have not had biopsies and we therefore do not know its real incidence. Certainly not in Europe. The three responses alone show that maybe there are other ppl with psoriasis and bladder issues! I recall that the when mucosal tissue from a person with Crohns was transplanted it had the same problems. Too many with MC have problems in the duodenum for instance. It can't be a coincidence. I have failed so far to deal with diet. Because I am lucky enough to not have the level of d that some of you do, this has led me to neglect the chronic elements. Somehow imagining that it will level off. It hasn't. Continuous travelling is also difficult in this way. I have noticed though that when my diet is restricted to Japanese food like sushi and fish things improve! Possibly there is a singular lack of gluten. Also green tips tea is fabulous and soothing.

[Leah]

Welcome Green Goddess.
It sounds like you have been suffering with a "leaky Gut" for a long time. When we have an inflammation for a long time, the fibers that should be tightly woven together to keep the food INSIDE our intestines loosens up and allows food to enter the blood stream. That's how the inflammatory process starts in other parts of the body. The longer you let this go on, the more likely you will only feel worse as time goes on. I know we all sound like a broken record, but diet is the key to healing. I was on Entocort for 6 months while I drastically changed my diet and once off of it, have never had to go back on ( it's been three years now). Going 100% gluten free is the biggest and best step you can take…. especially since you are showing signs of inflammation in other parts of your body.

Traveling makes it harder, but not impossible. You still have rice and potatoes for starch.
Good luck. I hope you feel better soon
Leah

[Greengoddess]

Thanks Leah and tex. Very interesting about the leaky gut. It explains a great deal. I may have had one since I was much younger. My earliest memories were of bowel issues. Imagine! When I had flares I could literally feel the pain in my feet and hands and the fibro. My family doc is focusing on th spleen because if the low white cells and elevated red ones. Seemingly reassured by normal sedimentation rate. I have no clue about the spleen and it's discontents!
My own doc wants a multidisciplinary team to study me. They still don't know the type of MC I have.
Leah, you seem to have done this by Entacort and eliminating gluten. I can certainly just do it. My work eating place now has a section for Gluten free and airlines are improving,
Tex description of the effect means I may need b vits too..
Now on to some article about the spleen for bedtime readings!

[Gabes-Apg]

Greengoddess

welcome to the group! sorry you had to find us...

I am one that had bowel/digestion issues my whole life. The MC diagnosis was a relief, it explained so many symptoms and issues.

They still don't know the type of MC I have.

whether you have LC or CC, doesnt really matter in the scheme of things.
Actually the principles we strongly recommend here work for all IBD's, low inflammation, low fibre, easy to digest eating plan. Remove all major food triggers, manage histamine inflammation and be proactive about supplementation for common deficiencies...

Frequent travel can make things a bit tricky, but there are solutions. Once you know your major food triggers, you can put plans in place to cope with travel.
As I am ok with rice, i use a rice based protein powder, mix it with coconut water and rice milk (and a bit of raw cacoa and coconut sugar for flavour)

I react worse to soy than gluten, so could not rely on safe meals when travelling internationally, I had a letter from my doctor stating that i had serious food intolerances, I would take my own food items with me on the plane, and had no issues with airport security as i had the letter from the doctor.

In your case, doing the enterolab testing would give you a fast indicator of your major triggers, so you can figure out your eating plan, and your travel eating plan.

There are not many medical practitioners that fully understand the whole of body impact of MC, and the linkage with leaky gut, and other AI issues. because of this, majority of people here do informed 'self management' using the knowledge and learnings of the 1500 or more people here, and applying those principles to their lives.

Hope this helps!

spend some time reading the posts and areas for new people, and some of the discussions in those areas, this will provide you with good information and maybe answer quite a few of your questions.

if you have the time, spend some time reading the success stories area, this will also give you an indicator of what others have done, and how long it took.
There are some that had fantastic results within weeks of giving up gluten! there are others that it took a few months before there was good improvement.

[Marcia K]

Wow, Tex nailed it with the comment that he felt better than he felt in 20-30 years. I felt so good the other weekend I found myself smiling. It made me realize how badly I felt when I had D. We just keep going on and doing what we need to do without thinking about how badly we feel. It's so good to feel good! And I know it's hard to see that when we are feeling so badly, but there is hope!

Marcia