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drdebc wrote:Bless your heart! You really have had a rough time with MC. It is terrible that you were hospitalized so many times. The next time I feel sorry for myself, I will remember you.
I have had MC for 30 years. I was finally diagnosed in 2008. One of my treatments was Entocort. I took myself off of it after 3 days because it stimulated my appetite so much! Too bad I did that.
Deb
Thanks Dr Deb - that is really kind!
I experienced the amazing appetite and energy surge but I have to say that things have settled well and I have managed to maintain my weight pretty much even though I have been on 9mg budesonide for 4.5 months! The weight loss in my case was mainly deliberate - when I flare I work hard to hang on to weight! I gained a lot of weight following an accident years ago and have been lazy about addressing it. I am excited now at the prospect of taking complete ownership of everything I eat from now on - well Thursday! It is one thing I have really picked up on on this Forum! I am really lucky to live in the UK - my prescriptions are currently free! As are my visits to the GP and Consultant! So many of you living west of the Pond have to resort to dealing with this disease differently - but thank goodness for you! I would have remained on drugs indefinitely in all likelihood had I not learnt that this can be controlled at least by diet!
So God Bless you all and I hope you all have a great Thanksgiving!
Anne
I got down to 110lbs at 5'3" and freaked out so immediately went on the Pepto. I almost want to get on Entocort just to get my weight back up but hear it can raise blood sugar. My appetite with this disease has always been large which I found weird. I even find that if I get a little nauseous it really means I need to eat something. BTW, I've gained 5 lbs back in 2 months. Only to probably lose some more once I get off Pepto but keeping my fingers crossed.
I'm taking a squash casserole and mashed potatoes (made with vegan butter/almond milk) over to my sister-in-law's for Thanksgiving. I will be able to eat her turkey luckily.
Here's hoping we all have a wonderful Thanksgiving with no tummy issues!! So let's all check back!
@Deb....interesting about your Kefir drink. I may try that one day...who knows. Need something else for breakfast besides my Rice Chex.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Hi Deb. I hope I am wrong, but some of the things you are eating could be giving you problems even if they are not as "violent" as other times.. Any time that we are take a medication, it will mask the effects of some foods that may otherwise cause us problems. The kefir (dairy), the artificial sweetener(splenda), the flaxseed (fiber).... They really make me nervous for you . Because the Pepto is keeping things somewhat calm right now, I'd hate to see you relapse after you stop the Pepto. This healing period is the time when we should be eating/drinking as simply and purely as possible. Then, down the road ( when drugs are no longer masking symptoms), "test" foods back into your diet. ..... just a thought :)
AmyNicki - Not only does Ramen have gluten, it also has soy. Could be a double whammy.
Leah wrote:Hi Deb. I hope I am wrong, but some of the things you are eating could be giving you problems even if they are not as "violent" as other times.. Any time that we are take a medication, it will mask the effects of some foods that may otherwise cause us problems.
Leah
Hi Leah,
So as discussed elsewhere before, dairy could be an issue as well as gluten! That said I am still prepared to go one step at a time - my symptoms are so much better than a few months ago, but not completely normal. I hope to see improvement just by going GF. If I achieve that, and then reduce the steroids, and maintain - hey ho!! Happy place!
But as we have discussed I have had very intermittent issues which have made me suspect dairy - but not conclusively enough for me to go non dairy! I guess that one I will have to wait and see. I am hoping that my reaction to gorging on gluten over the last 3-4 weeks (which has given new symptoms of bloating, gas enough to lift a very large hot air balloon with at least 19 people in the basket !!!) and the on-going normal - dodgy to fluffy blobs - any combination between 1 and 9 times a day!!! I am more convinced than ever that gluten and I have issues! Divorce proceedings commence on Thursday!!!!
And let's not forget the newbie here!!! Amynicki - I guess you can see how conversations sometimes go on this forum - but that way you learn so much more!!! And as I have said before check out the jokes! The I-Pod story I have now told to my entire office - believe some were nearly s******g themselves laughing!!!!
Take care and welcome to the family!
Anne
I do pray you are incorrect. I am also open to the option that you are correct.
I joined this site in 2008 when I was diagnosed with MC. If the 8 week Pepto plan was a suggestion then, I must have missed it. I forgot about this site-regrettably my fault! I recently re-connected in desperation. If these items prove to be a D problem after the next 7 weeks, I will discontinue them.
Thanks for your warning,
Deb
Retired marketing Higher Ed PhD striving to heal myself with a minimal amount of prescription meds.
Diagnosed w/collagenous MC, Barrett's Esophagus, Celiac, Hypothyroidism.
I have a Brit from Leeds who resides in my lower level of my home. Can you believe he has a REAL challenge with being too skinny? We-my fella and self-are coming up with all sorts of suggestions to him. I am racking my brains with all of my don't dos (to lose weight) and recommending that he does them. LOL I am curious as to what you meant by the statement "when I flare I work hard to hang on to weight!" Are you saying that with your flairs you lose weight? If so, I WISH. It does not happen to me!
Cheers to you from England and the USA,
Deb
Retired marketing Higher Ed PhD striving to heal myself with a minimal amount of prescription meds.
Diagnosed w/collagenous MC, Barrett's Esophagus, Celiac, Hypothyroidism.
Squash casserole and mashed potatoes? YUM I dream of the day when I can ate such foods.
I am 5' 3.5 and would KILL to weigh 109 again.
Happy Thanksgiving,
Deb
Retired marketing Higher Ed PhD striving to heal myself with a minimal amount of prescription meds.
Diagnosed w/collagenous MC, Barrett's Esophagus, Celiac, Hypothyroidism.
DrDeb, There is a water-based kefir too, that I'm currently brewing. It tastes much different than the dairy one. It's quite bland with just a bit of yeastiness to it but could maybe be tweaked to work in your drinks. If you're interested in trying it, I can send you some grains to make some. Deb
Thanks so much for the offer. I researched that idea and thought about purchasing some grains. Do you have to grow them in a heavy amount of sugar? That was my one hesitation.
Retired marketing Higher Ed PhD striving to heal myself with a minimal amount of prescription meds.
Diagnosed w/collagenous MC, Barrett's Esophagus, Celiac, Hypothyroidism.
It does use a fair amount of sugar (I use turbinado raw). However the fermentation process uses up most of the sugar. With this and the kombucha I brew it until it gets more sour than sweet. Deb
Welcome AmyNicki - your comment on eating ramen noodles made me laugh. I had a liking for chocolate covered nuts and found myself eating them even though I knew the soy in them would make me sick. I was just hoping each time I tried them, maybe, just maybe I wouldn't get sick. Finally, I realized I wasn't doing myself any favors and gave them up. Hang in there!
Thanks for offer of the grains. That might be something I would like to try after I feel better. I caught a nasty cold the day before Thanksgiving. And of course, the cold lowered my immunity and thus the D really flared up. That always happens to me. I am persevering with the addition of homeopathic cold meds to my Pepto Bismol regime.
Please give me a rain check and thanks again,
Deb
Retired marketing Higher Ed PhD striving to heal myself with a minimal amount of prescription meds.
Diagnosed w/collagenous MC, Barrett's Esophagus, Celiac, Hypothyroidism.
Welcome Amy!
I'm also 38 with LC. I went gluten/dairy and mostly soy free all at once after I got Enterolab.com stool and gene testing and got amazing, almost overnight results. Unfortunately, the results were not so spectacular months later, but still 80% better than when I started. I recently started taking an antihistamine, Claritin, and was amazed to see the results. Normans every day for weeks (so long as I follow the diet too). However, I'm also experiencing a flare of Dermatomyositis, so maybe my immune system is just busy ravaging my skin instead.
Recent studies show that Splenda kills of your good gut bacteria. We don't have any to spare. It's not as horrible as aspartame, but I stay clear of all artificial sweeteners.
I do OK with flaxseed meal, but not whole flax seeds, or most any seeds for that matter.
I am amazed to read that Splenda kills good gut bacteria. Do you think Stevia also does that? Thanks for the tip. I was using Splenda in iced tea. I too seem to be okay with flaxseed meal-3 tbs in the AM.
Thanks in advance,
Deb
Retired marketing Higher Ed PhD striving to heal myself with a minimal amount of prescription meds.
Diagnosed w/collagenous MC, Barrett's Esophagus, Celiac, Hypothyroidism.
!!!) and the on-going normal - dodgy to fluffy blobs - any combination between 1 and 9 times a day!!! I am more convinced than ever that gluten and I have issues! Divorce proceedings commence on Thursday!!!! 
