Update from Rosie

[Rosie]

I haven’t posted in several months, but have been lurking around keeping up on Gabes’ travels, and all the new people’s stories. As often happens when people get better, they move on, but I’ve discovered that the spirit on this forum keeps me coming back, so I’ll probably get back into posting more regularly.

For the new people, I was diagnosed with LC almost exactly 1 year ago after several months of serious D. That has got me reflecting at how far I’ve come in the past year. In retrospect, my symptoms started around 5 years ago, and I was able to keep them at bay for a while by eliminating dairy. I thought that I had simply developed lactose intolerance, but of course it was more than that. Finding this forum was the best thing that could have happened to me, because it really helped me in stabilizing. I eliminated gluten first and had an amazing improvement. Knowing that LC often comes with additional food intolerances, I decided to go for the entire Enterolab food sensitivities testing. That testing confirmed that I am gluten intolerant, and also that I am soy and yeast sensitive as well. That was a bit depressing, but at least I could eat eggs, so I counted my blessings. So starting about last September, I have been gluten, dairy, soy and yeast free. That has been enough to stabilize me pretty good, and I have been fortunate not to have to take any drugs (except the occasional Imodium). And I have been very strict with my diet, no cheating…….well, I do keep trying to see if I can drink wine. I can have one glass occasionally, but after several evenings in a row, I start to deteriorate.

I have not had a real flare in the past 9 months, only the occasional looser stools when “glutened”, or when I test an irritant type food and discover that my gut isn’t ready for it yet. I think that my gut has healed enough that when I do get exposed, I can handle it without getting to the stage of watery diarrhea. I’ve been slowly improving and can consume more fiber, in the form of fruits, nuts and vegetables. Last year for some reason pumpkin and sweet potatoes wouldn’t do well for me, but now I can have them on a regular basis. And this spring I have been eating lots of fresh local strawberries, raspberries and blueberries without any problems.

Oddly enough, the one food that still seems to upset my system is seafood, especially oily fish like salmon and tuna and I don’t understand why. I would love to be able to eat more of them, but have now gotten to the point where even the smell makes me slightly nauseous. But as we know, we are all different, and I know that others here have some odd foods that they can’t eat.

However, I know that I have a ways to go in the healing process. I go some days with only two BM’s, but some days have four, although they are “Normans”. The “gurgles” are still with me, though not as often. Most often I notice it at night when I first lay down. And I can’t seem to get my weight above the 118-120 lbs range. That’s not bad, as I’m 5’5”, but I want about 5 more pounds as a “reserve”. If I’m not always pushing myself to eat, or go on a trip where I’m not able to eat as much, my weight drops right back down and I have to work to get it back up.

I would have to say that what has surprised me most is how long the healing process takes. And it’s not linear, but will stay at the same level for a while, and then suddenly a small improvement is noticed. I think that not taking drugs has enabled me to discover more easily what foods I can truly tolerate, but it does mean a slower process. However, I feel stabilized and that I’m slowly plodding along and improving over time. Being patient with the process is the hardest part for me.

I do have my life back, as has been promised many times on this forum. My energy is high, the brain fog is gone, and I don’t have to keep checking where bathrooms are located when I’m out and about!

Rosie

[Joefnh]

Hi Rosie, I am fairly new here since April and have a modestly similar story. I believe I started having issues a good 10 years ago and eliminated dairy, which helped some. It wasn't until the last year that the D became an almost constant and in April went nuts. I was diagnosed in April with CC and crohns. I did take the entocort route which helped quite a bit but diet is at least as much of a factor while on meds and obviously more so after the meds are stopped.

Overall nor dairy, gluten and have been eliminating any yeast. The gluten made the biggest difference.

Thanks for the update

--Joe

[harma]

Hi Rosie, it is a pleasure to read your story, how you have been making progress over the last year. Your story sounds a lot like mine, only I am couple of months behind you. Mine started last year may and was diagnosed end september. Like you I have a lot of food intolerances, I live on fish (funny enough I can handle oily fish very well, again you see how different we all can react), lean meat, 3 types of veggies, 3 types of fruit (yes I expanded this week with one other kind melon) and rice. All the berries no matter with color or type are still a big no to me.

Another thing that sounds so familiar, is the way progress happens, staying at the same level for a while and than just one morning you realise it is different, better than a while ago. The main difference I recognize (and what you also write about) is the brain fog. I noticed a difference about 3 - 4 weeks ago, it's gone. And than realizing it has been there for years.

I just wonder, if you recognize this too. After I've make a big jump in the progress, soon after that I have a small kickback. Like you say it is not linear but it goes with a big up, followed by a small down and than overall up.


harma

[mbeezie]

Hi Rosie,

Welcome back. Glad to hear you are doing well with only occasional flares.

You can have an intolerance to any food, and that includes seafood. Remember that fish and shellfish are on the list of top 8 allergens for the US, not that you have an IgE allergy, but intolerance is certainly possible. Seafood is also high in histidine which converts to histamine (the less fresh the fish the more histamine builds up). Pumpkin and wine are also histamine releasers and are on the list of foods to avoid on a low histamne diet. Histamine is a dose-response chemical and we all have a threshold of tolerance (everyone will react to large amounts of histamine). When people suffer from enviromental allergies (or other allergies) there hisatimine load is higher and I think this is why there are some seasonal variations in symptoms with this disease. We have an enzyme in out gut called DAO (diamine oxidase) that is specific for histamine. It is very possible that DAO gets disrupted with gut damage from MC. As healing occurs you may get return of ezyme function and regain tolerance to some foods. I have come to beleive that people with GI disorders have revved up immune systems and are releasing lots of pro-inflammatory mediators.

I think the concept of gut healing is interesting. I have come to appreciate that we don't totally heal. I used to envision healing like a scab when you get a cut - things returning to normal. That is not the case with gut damage and food sensitivity. When we remove food antigens or irritants we will stop malabsorption and return some enzyme function and can control "leaky gut" by staying away from these foods but we never go back to normal. Some food sensitivities are temporary and some are permanent. The lectin intolerance that we all experience is permanent - we never go back to a normal baseline but can keep symptoms under control by avoidance. Your ongoing mild symptoms seem to point to some unidentified intolerances that trigger mild symptoms. Have you looked into mediator release testing to help identify any remaining intolerances? That really helped me fine tune my diet.

I agree that there is a positive energy to this forum, unlike many others that I have visited, which is why I continue to visit even though I am no longer having major symptoms. Here is an article from the New york Times on support groups - http://well.blogs.nytimes.com/2010/06/1 ... /?emc=eta1 So glad our group remains positive.

Mary Beth

[Rosie]

Joe, thanks for the "welcome back"! Having to deal with a combination of UC and MC must be a real challenge. You have such a great attitude!

Harma, I certainly agree with your observation of having a small "kickback" after moving forward. I think that it's so tempting to think I am doing better and then start testing to see if some previously favorite foods can be added back. I sometimes wonder whether it would be better for me to just go on the bland diet for a longer period of time before expanding food options. For several months I was having trouble even tolerating baked goods made with gluten/bean free flours. I'd try, have minor problems, stop, and then try again several weeks later. Now I can pretty much tolerate them. I guess we each have to find our own balance..... Patience is so hard! As for the brain fog, it's interesting. I thought that I was pretty much over it, but then suddenly last week I started getting very enthused about a new project I'm undertaking. Then I realized that it was the first time in over a year that I had felt that way. So I'm suspect that the brain takes as long to heal as the gut! Hopefully I'll continue to improve even more, and it will be the same with you and others!

Mary Beth, that's a very interesting connection you make about histamines.

Your ongoing mild symptoms seem to point to some unidentified intolerances that trigger mild symptoms. Have you looked into mediator release testing to help identify any remaining intolerances? That really helped me fine tune my diet.

How would I go about mediator release testing. I don't really know much about it.

Rosie

[mbeezie]

Mediator Release Testing is done through Signet lab www.nowleap.com


Mary Beth

[tex]

Rosie,

Great post! It's nice to see you posting again, and it's certainly nice to learn that you're doing so well, and it's a pleasure to see such upbeat, helpful information. Your post is a perfect example of why this support group is such a sharp contrast to the one described in the article that Mary Beth referenced.

I certainly agree with you that the length of time required for healing is much, much longer than is commonly believed. I suspect that's probably the main reason why so many GI docs have such poor success with their prescribed treatments - they're too impatient, and they end the treatments far too soon, because they simply don't have the foggiest idea how much time is actually required for healing. And, as Mary Beth points out, doctors keep expecting healing to be complete, and that is not going to happen, except in pediatric cases.

Did anyone else notice the reason, (IMO), why the prevailing attitude in that support group described in the article that Mary Beth mentioned, was so negative?

I'm pretty sure that it was because the meeting was held in a hospital. The moderator was also probably affiliated with the hospital. Hospitals do not have a good record of dealing with IBDs, and that is the last place that I would choose, to have a meeting of a support group for an IBD. Hospitals are places where surgeons remove colons, in order to "cure" IBDs, and they're a place where patients die, when things go wrong. It is not a place where one contemplates "getting one's life back". Every time I've been in one, I've mostly contemplated getting out of there, (hopefully alive). Am I wrong?

Tex

[Gloria]

Rosie,

What terrific progress you've made! I just read your first posting made one year ago tomorrow: http://www.perskyfarms.com/phpBB2/viewt ... highlight= (this is a before and after post ) You've come a long way!

Thank you so much for sharing your experience. You've encouraged everyone who is still struggling.

Gloria

[MaggieRedwings]

Congrats Rosie!

You have come so far in a year and it just proves the point that what works for one person may not for another. Also, like the observation of "Plateauing" - hitting a level and staying there and then moving on. I wish I could have done a healing process as quickly as you but it has taken years for me. I am finally at a stage that I do feel much better. Being a vegan and not eating the meat or fish - in my case fish and fowl - I think slowed my progress. Have been eating meat now for about 1 1/2 years if I remember correctly and feeling better.

You are a great example of sticking with it and being part of a great family.

Love, Maggie

[harma]

I also have mixed experiences when it comes to support groups, I am a member of two Dutch ones; one for IBD's in general (where the expertise on MC is crappy, actually I am the expert now there, at least that is my opinion) and for Celiac disease. Both support groups are fine, but not all like this. The one for IBD's is mostly populated with Crohn and UC patients, very often in a bad condition. What keeps amazing me, it that there almost no self management in dealing with their diseases; lifestyle, diet, food, alternative medicine, knowledge of their diseases and medication. No most of them put all their faith in mainstream medicine, their GI doc is some kind of god. The only way to treat their diseases seems to be medication, medication, medication. Humira, Entocort, Imuran etc. Medication seems to be their mantra. Although I could help one there, that got MC due to a stomach medication. But even she did not join this group.

But also no one on that Dutch board seems to be interested in the details of their disease, the latest developments, what kind of medication they are taking. When I found out that I had MC, I wanted to know everything I could find about it, also I wanted to know what kind of meds I was taking and most important what I could do myself to treat this disease. Also there are a view MC'ers on that board and I always refer them to this board. I would jump a whole in the air if somebody told me about something special for MC. But I am still waiting for a next Dutch person to join. I just don't get it, most of them seems to be more interested in "eating what they like" than improve their quality of life, control their disease with diet.

Don't get me wrong, in general there are nice people. It just don't understand their totally different attitude to doctors, medication and self management. I think I don't have to explain I feel so much more at home here on this board than on the other boards.

[Rosie]

Harma, good observations. I think that this forum attracts "active" rather than "passive" people. Those who want a magic answer----- some sort of drug that will cure them without any lifestyle changes on their part----- don't stick around long. Also, impatient people don't stick around either. And chronic whiners and complainers don't find a welcome here either, although there is lots of sympathy for the setbacks this disease can have. Most people on the forum respond to chronic complainers with "tough love".

And of course, Tex sets the tone, and is a very effective moderator. Only occasionally will a "troll" or very negative person try to hijack the forum and Tex quickly puts them in their place.

Rosie

[wonderwoman]

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http://well.blogs.nytimes.com/2010/06/1 ... /?emc=eta1 So glad our group remains positive.

A very sad article. I too am fortunate to have found this support group.

I do not post a lot because of my busy schedule but read the new posts every day.

After being back from our trip now for two weeks now I still haven't gotten my bowels back to what they were the beginning of May. Having one or two BM's a day but they are still pretty soft. No D though I am happy to report and have not taken any Pepto Bismol since returning.

Had reaction after eating watermelon and cantaloupe earlier this week. Therefore, I am eliminated all fruit except bananas and applesauce. Made a delicious chicken soup in the slow cooker yesterday and put in lots of carrots and rice for filler.

I started with laryngitis after ice skating last Thursday with the grandchildren. My daughter really loaded me up on Vitamin C and Garlic capsules over the weekend and I also purchased some for at home. She said garlic is a natural antibiotic. I have laryngitis about twice a year and this is the first time that I recovered from it so quickly. She only believes in natural products for healing. I must say this worked for me. I did question weather the Vitamin C may have caused me to have a looser stool.

I posted earlier today that I like to see pictures of the people posting here. It helps me to keep better tract of the persons progress. Where as just a name doesn't mean as much.


P.S. Thank goodness for spell check. I can't believe how many spelling errors I make.

[harma]

Charlotte, if you wonder where you would be without spell check, can you imagine how much I depend on it. And than still I know here and there my writing still contains grammatical errors and spelling mistakes.