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THELMALMF3B's Photo THELMALMF3B Posts: 14
7/26/13 2:38 P

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This is also the first forum I have joined. I was diagnosed with microscopic colitis in 1995. Asacol worked for the first couple of years, then stopped being effective. I had several miserable years trying to control with pregnasone, before endocort came out, which was a godsend. I have been on that medication for the better part of 15 years. I am trying, however, to take break from that medication now and control with Pepto-Bismol. I'm getting to the point where I worry about even the low levels of systemic steroids weakening the bones.

I have been tested for celiac multiple times and tried gluten-free.... it makes no difference. No dietary change I have ever made helps. The only thing that reliably sends it into long-term remission is pregnancy, and if I tried to control my symptoms that way.... well, I'd have to go live in a shoe.

For better or for worse, I have never lost weight as a result.... so I am in the position of trying to get down to a healthier weight. A couple of months ago I decided to jump-start the weight loss by doing Medifast, but if anything, the colitis has gotten worse, so I am weaning myself off that food and going back to Sparkpeople. I am glad to see at least a small community of MC patients.... as a previous poster said, we have our own issues.

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WEIGHDOWN8 Posts: 1
7/25/12 3:22 P

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Hi - This is the first forum I've ever signed up for. I was diagnosed with MC last summer, but I believe I've had it longer. I have always reacted physically to stress, even being hospitalized with unexplained stomach pain at the age of 8! What lead to the official diagnosis was 6 months of diarrhea accompanied by a 30 pound weight loss. I walked away from a high-stress job and have spent the last year trying to learn to live in a way that keeps the symptoms to a minimum. Medication hasn't helped, but keeping the stress level down has. I'm glad to have found this forum with people who understand that MC is not IBS, Crohns, ulcerative colitis, or any of the others. It's a distinct problem with its own issues. I'm looking forward to learning a lot from all of you.

AVAROSE12's Photo AVAROSE12 SparkPoints: (5,586)
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6/3/12 5:03 P

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If you need any other help just let me know. Are you gf as well. I am teaching the local coffee shops firstly to offer more gf options but also to label them as such as it is nice to be able to browse and be able to make the right choices without having to ask all the time. Most have been very grateful for the suggestion and they have had positive feedback from other customers.

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6/3/12 5:00 P

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Only to pleased I could be of some help. I to followed fit for life in the 80s and it worked well. The web site that I have got my current info from is food-combing-diet.com It has a list of food to tell you which is neutral, protein or carbs and they have fruit & nuts as neutral which means you don't have to have fruit only in the morning. I still eat it alone most of the time. Bananas are carbs so I was able to have them this morning with my muesli. They also suggest that you have your protein meals for breakfast & lunch and a carb meal at night. I am doing this most nights and is working well. take care Jan

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LYNETAL7's Photo LYNETAL7 Posts: 96
6/3/12 4:58 A

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Hi Avarose ~~

Thank you ever so much for your feedback and helpful info concerning food combos... "not combining starch and protein at the same meal".... made a light bulb go off in my memory cells (lol) because in the 80s I lived the "Fit For Life" Diet for a long time, but have let the good habits I learned then go to the wayside... you've "sparked" my interest to find out more on this and incorporate it into my meal planning! I did not understand until you said it so clearly that this will help prevent flareups (my doctor has recommended eliminating gluten). Thank you thank you thank you once again.. take good care.

Lyn

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AVAROSE12's Photo AVAROSE12 SparkPoints: (5,586)
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6/3/12 1:35 A

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Hi

Thanks for sharing your story. That is some story. Being a MC sufferer is new for me to Jan 2012, although I have been off wheat from time to time over the past 12 years. I am also celiac diagnosed at the same time. I have 3 children grandchildren who are also celiac there is a strong link between celiac and MC my specialist told me to go gf it is one of the treatments for MC currently being used. I am also doing food combining ie no starch and protein at the same meal. To try and get the flare ups under control. Take care

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LYNETAL7's Photo LYNETAL7 Posts: 96
6/2/12 4:16 P

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Hi ~~ I'm a newbie to SparkPeople (Day4 for me), but I have found many wonderfully helpful articles and information in this team, as well as in the Natural Health Using Herbs, Supplements & Vitamins team... check them out too!! It's kindof embarassing how much I wrote in my email above, if you saw it... but... I revised it and added more to it and posted my first BLOG ever on mySparkpage... thought you might like to see it too... don't know how to link it here so I'll probably it to you from my homepage.... be in touch and take good care!! You are NOT ALONE!!! I would love to know more about your history with MC, etc. if you ever want to share with me emoticon

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LYNETAL7's Photo LYNETAL7 Posts: 96
6/2/12 11:32 A

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Today is Day 5 for me in SparkPeople... just found this team and am overjoyed!! I want to share my MC story with you... after thanking you and Spark with all my heart for being here and praising God I've found you!! emoticon

I am going to go into great detail here so maybe this will help someone who reads this!! I was diagnosed with microscopic colitis this past February 2012. It IS different than other types of colitis in that it can only be diagnosed if a biopsy is taken during a colonscopy and seen in a microscope (hence its name). I was truly blessed to have a doctor when I was hospitalized (more on that below) that insisted I have a colonscopy and that he went the extra mile to look especially for this condition, as I understand most people are misdiagnosed for years and years! The REASON he did this he tells me is because during the colonscopy he saw "a lot" of fecal matter still in my colon... even tho... I'd had been having "watery" diarrhea for over 3 weeks (more on that too below)... BINGO that's exactly what microscopic colitis does... interferes with the water absorption in your colon to breakdown solids for elimination. He also could see that the entire lining of my digestive system was inflamed... another tip-off that made him look for MC.

This has been a horrible, traumatizing experience, but on hindsight I praise God for it all... because I DID get a doctor who is helping me... but.. how did i land in the hospital to begin with?? I'd had watery diarrhea for 3 weeks as well as nausea... and had gone to my family doctor and was taking what she'd prescribed. I mean, I had to start wearing Depends day/nite because the diarrhea wasn't controllable... even with 4-5 imodiums/day!!! And, the last 4 days before my followup with my family doctor, I'd begun falling... into walls.. not being able to walk straight... trouble seeing... over-sensitivity to light!!! When my neighbor took me to my family doctor that day, it took my doctor 5 minutes to order me to get straight to the hospital!! I immediately was surrounded with doctors & nurses... and forced to stay in bed or an alarm would go off... at 3am with 6 people in my room looking at me and talking about me... i was finally told I had stage 3 renal failure... that my blood pressure was down to 40.. ,yes... 40... but I could hear everyone talking about me saying why is she even alive and stuff like that!!! OMG... it was terrifying... I myself still had my wits about me and could hear and see everything... I was truly blessed!!!

Ok... so that's when my wonderful colon doctor did his thing and with iv's and medication, etc. after one week, the renal failure was reversed completely and I was allowed to go home... 20 lbs lighter in only 2 weeks!!! So, since then, my colon doc put me on asacol tablets (2x3times per day) and its working to keep the diarrhea, nausea and bloating in check... This kinda brings me to now... this medication has caused my blood sugar levels to spike and attributed to gaining 41 pounds since January 31... I've tried 2 times to cut back but so far I cannot as all symptoms return quickly after I try...

Well, I've had diabetes for almost 10 years... have been on insulin day & nite kind for about 3 years now... was doing good/ok with controlling my bs until this episode in my life... ADMITTEDLY, I was binging constantly eating and all the wrong foods until last week when my family doctor put me on Cymbalta (for a variety of reasons)... when my BS went out the window the moment i started cymbalta (which I was pre-warned about.. so I started monitoring my bs 6-8 times per day and omg... my bs was consistently 240+-400 even!!

This is how I've found SparkPeople!!! AND... already on only day 5 my blood sugars are running between 120-170 only!!! I have had to increase my insulin which is making me continue to gain weight for now, but the changes in my nutrition, tracking, being informed on how to get back on track because of Spark... I believe, will help me be able to reduce the insulin soon... and I'm so so excited to be here... to be learning so much and being so supported thru Spark teams... all the negativity that has plagued me since I "almost died" in January is disappating day by day as I live SPARKED now instead of SPOOKED!!! I will be sure to post at least weekly to let you know how I am doing... would love to hear from you all.. please visit myspark page anytime and add me as a friend, if you'd like... http://www.sparkpeople.com/mypage.asp?id=l
ynetal7 Still so new at this and a little overwhelmed bout how to do everything.. but i'm learning.. lol

Sorry this is so long... but... I hope hope hope hope it will help even one other person somewhere along the way.... all my best to each and everyone of you out there... take good care of yourself today and always!!!

Lyndel

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AVAROSE12's Photo AVAROSE12 SparkPoints: (5,586)
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5/21/12 3:21 P

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Hi all MC people,

Is anyone else following a gluten free diet or am I the only one. Also can anyone give me some advice on the medications that work for this condition. Since going gf I am 100% improved but I still are having relapses, I am reluctant to cut out any more food groups such as dairy, coffee, and alcohol, although I would if I had to, I do enjoy a glass of wine a couple of times a week. Coffee I have 2 a day the rest of the time I drink herb tea and water. Have a good week everyone Jan

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TEXASDEW SparkPoints: (269)
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5/21/12 2:54 P

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Hello...nice to meet someone with the same condition as me. Looking forward to talking and sharing more.

Vickie

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4/26/12 3:08 A

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I am hoping that being GF will help with my weight loss, but will have to keep away from chocolate and wine my two weaknesses. But I do want to lose at least 15 kgs.

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SALLEE8's Photo SALLEE8 SparkPoints: (653)
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4/25/12 4:10 P

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Hi, It is nice to hear from you. And, I am so glad you are feeling better. I was tested for Celiac Disease & Crohns 6 years ago with negative results. It sure sounds like you have found the culprit and made adjustments accordingly. There aren't many people with MC diagnosed; I think many of them are being treated for Irritable Bowel Syndrome, which just makes things worse. I went through that.

I saw my GI last week to discuss taking the meds long term. It's really the only way I can lead a productive life. The prescribed dose is 3 capsules each morning. I tried reducing to 2 capsules this last week, but symptoms returned. He said there is such a small amount of steroid in it and it doesn't dissolve until it reaches the colon.

My nephew if married to a gal from Auckland (hope I spelled it right!). She is charming; I love her accent.

I would think a GF diet is conducive to weight loss. Am I right?

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Sallee

"Happiness is like a butterfly. The more you chase it, the more it eludes you. But if you turn your attention to other things, it comes and sits softly on your shoulder."
Henry David Thoreau


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AVAROSE12's Photo AVAROSE12 SparkPoints: (5,586)
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4/25/12 3:50 P

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Hi

I have microscopic colitis was diagnosed Jan 2012 but have suffered for about 10 years. I also have celiac which the current thinking is that people with MC may have as well. At the moment I am following a GF diet which has helped immensely fatigue,aching joints, nausea, diarrhea all gone. As yet I am not on any medication. 3 of my grandchildren have celiac and all have the gene marker for celiac as do my two daughters but I have yet to have that test but its not one that is done routinely here in New Zealand you have to push for it.

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SALLEE8's Photo SALLEE8 SparkPoints: (653)
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3/15/12 1:28 A

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Hi, I just joined the team. I notice there aren't many members with MC, but thought I could make some connections and maybe learn something new.

I was diagnosed 6 years ago and can manage it quite well while taking Busonemide (generic Entecort). However, once in a while I have to take a break from it for a month. I keep a diary of symptomns when I quit taking it. Generally by that time I'm beginning to backslide and have to go back on it. Last cycle I had a very difficult time getting through the month without it. I'm not going to let that happen again.

Since it isn't IBS or one of the other bowel diseases, figuring out what to eat is not the problem. It's just that the lining of my colon is inflamed, so just like any other muscle that is not in good condition, it causes terrible pain just from food passing through it.

Well, that's my happy story. Other than that I have a very blessed life. Let me know if you have any advice for me. Thanks,



emoticon

Sallee

"Happiness is like a butterfly. The more you chase it, the more it eludes you. But if you turn your attention to other things, it comes and sits softly on your shoulder."
Henry David Thoreau


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