Had my colonoscopy on 4/25/11, got the bx results back with a call from the GI that I have LC. Couldn't get in to his office until next Tues. 6/6/11. It's been really difficult to wait this long, but I've had symptoms for years so what's another 2 months right? haha!
Anyway, I am hoping some of you might have some advice or suggestions for what I should ask of the GI doc, or if there are any red flags that I should watch for, things like that. He mentioned wanting to go straight to putting me on Entocort, and nothing about diet management. That was over the phone, however, so maybe he will go over that during my visit.
Thanks so much for any words of wisdom! And it's obvious there are lots of them in this forum. I am SO grateful to have found this place.
Valerie (a.k.a. "RunIBD")
[/img]
Just diagnosed with LC, waiting to get in to see GI for treatment and SO tired of feeling sick, crampy, and tired.
Welcome to our internet family. We consider ourselves a family, because no one truly understands this disease, unless they actually have it. We are all different in our symptoms, and in our responses to treatments, so we share experiences, and learn from each other, how to work out a personal treatment program that works best for us, and allows us to get our life back.
That's a heck of a note that you had to wait so long after your colonoscopy, before getting to discuss your diagnosis with your doctor. In view of that long delay, and his comments on the phone, I would be very surprised if he is even aware that MC can be treated by diet changes, and if he is aware of it, there is a good chance that he may consider it to be a "snake oil" type of approach. Many GI specialists, with out-of-date training, will virtually argue until they're blue in the face, (as the saying goes), that diet has nothing to do with LC.
Hopefully, you'll be lucky, and he will be up-to-date with his knowledge about LC, but if it turns out that he's not, and you want to try a treatment regimen with Entocort, you'll just have to smile, nod, and humor him, because arguing will get you nowhere, unless he happens to be one of the few open-minded GI docs out there, who actually listen to their patients, and learn from them.
If you don't want to take any drugs, it's possible to control the symptoms of this disease by diet alone, but for most of us, that requires a lot of hard, dedicated work, (and a lot of label-reading, of course, but it can certainly be done. You can usually attain remission faster by using a combination of Entocort and diet changes, and many members go that route, and then gradually phase out the Entocort after the diet has been fine-tuned, and your intestines have had some time to heal. Most GI docs who are not knowledgeable about treating LC will try to wean their patients off the Entocort after 6 or 8 weeks, but even patients who have eliminated their trigger foods from their diet, will virtually always relapse when the Entocort is withdrawn, because the inflammation is still being generated, and it takes many months, (usually at least a year or so), for the gut to heal.
Some members are fortunate enough that they are able to control their symptoms with Entocort alone, (or by using one of the mesalamine-based drugs), without making any diet changes, but most of us find that we are not that lucky, and we have to make some diet changes.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
P. S. Would you like for me to convert that image into an avatar for you?
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Welcome - after Tex's great info, all I have left to say is... what a great photo, of both you and that adorable kitten!
I hope you have a chance to tell us the story of how you got so lucky to cuddle that little wild fuzzball.
I really hear ya about being tired of being tired (and sick and crampy). I didn't even realize how tired I had been till I was suddenly bopping around the kitchen like a normal person. I know you'll get there, too, and I'm sure you'll find help here to make it happen faster.
Six weeks is a long time to wait for an appointment with your GI after a colonoscopy. I think that says that he or his office considers it to be "no big deal," because you'll be treating it with Entocort. Let's hope for the best - that he's knowledgeable and helpful. Some members have reported that their GIs were either unfamiliar with Entocort, or didn't recommend it, so your GI is ahead of them.
As Tex mentioned, it's likely that your GI won't acknowledge that there's a relationship between MC and diet, but we know better. We are here to give you guidance with your diet if you need it.
You will get better and you will get your life back.
Gloria
You never know what you can do until you have to do it.
Thanks so much for the information you've provided, and the support! My husband has been wonderful about this, but I can't keep using him as my only sounding board, so having you here means the world to me (and him no doubt ha!).
The main reason I had to wait for my appointment, I think, is because I have an HMO and had to get a referral from my GP. It took my GP 2 years after multiple visits for GI problems, joint pain, depression, migraines... and up until about 4 years ago I was the picture of health for the most part. So frustrating and disheartening. I'm ready to find another GP.
Being armed with the knowledge that even GI docs aren't always willing to look at alternatives for treating LC will give me some leverage when I see him on Tuesday. I know my body, and I know there is a lot going on... unfortunately the docs are the ones with the power to request diagnostics, especially in an HMO situation. They don't know yet what a fighter I am, so chances are I'll make my way through a myriad of defensive and closed-minded medical professionals. So be it!
Tex, I would love to have the image as my avitar. There's probably a way I could do it myself, I just didn't see it? Thank you for offering to do it. The pic is from my work. I'm fortunate to be the administrative manager for the veterinary hospital at the San Diego Zoo Safari Park, and now and then we have patients I get to love and cuddle. It's one of my favorite pics.
'Night all!
Just diagnosed with LC, waiting to get in to see GI for treatment and SO tired of feeling sick, crampy, and tired.
If I didn't set it up the way that you would prefer, just let me know, and I'll be happy to change it in any way you wish.
You're very welcome.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
You're off to a great start, Valerie - you may get some relief from your other symptoms as well as the GI stuff with that gumption, plus figuring out your problem foods.
A lot of us have used Enterolab (enterolab.com) for testing - there's a forum specifically for the results, for those who've chosen to share them. (You'll find it from the main index, as you probably already know.) Some people feel better as if a switch is thrown when they drop the offending foods - most commonly gluten, with dairy following right behind. Soy and legumes seem to affect about half of us (sorry, Tex, I'm stealing your stats and expertise here) - I can't quite figure out which half I'm in at the moment. From there it gets harder to predict - both whether you will have multiple intolerances, and what those might be.
Unfortunately, most of us don't feel that immediate 'bounce-back' even though we may feel much better, especially if we've been suffering for years with symptoms. Your story of a length time to diagnosis is not uncommon, sadly. Many people have described Entocort as "giving them their life back." A few have been unable to tolerate it - it's so individual. I have successfully used two other medications that gave some others significant bad reactions (including a Pepto Bismol regimen recently - I used it for a shorter time than the protocol - and a Rx drug, long ago).
Hope you find your path soon to healing, and I hope this GI doc is ready for you ;) - and helpful,
Tex, Gloria and Sara, thanks so much for your help and kind words!
It's going to take a while to get used to this - someone gave me a white chocolate and macadamia nut cookie today - my favorite - and I didn't even think about it until about 20 min's after I enjoyed it. Let's just say the enjoyment was fleeting... I'm going to have to say good-bye to a lot of things apparently. Well, they're probably not good for me anyway and it'll be a challenge to find replacements right?
It can't be Tuesday enough...
Just diagnosed with LC, waiting to get in to see GI for treatment and SO tired of feeling sick, crampy, and tired.
Hi Valerie and welcome,
You will find lots of great advise and support on this forum. I was diagnosed with LC last fall, but this all began in August. I went through a couple of GI doctors before I found one that I truly like. I tried the pepto bismol route with no success, it helped with the D, but gave me lots of pain. The first doctors did nothing else to help me other than to say, "don't worry, it will go away". Nothing about diets. Finally, I found one who immediately put me on Entocort and it did give me back my life after 9 months. Now I concentrate on the foods I can and can't eat. He just gave me a prescription for another 6 weeks and a prescription for Questran, which I will take before ending the Entocort cycle. Hopefully, this with diet will work.
I know how frustrating it can be with doctors. I had to wait about a month to see this new GI doctor, but he was worth it. He was recommended by someone on this forum so I didn't go into this blind. I also changed my PCP because the one I had was just not aggressive enough. The new one came highly recommended and I had one visit with her and immediatly liked her. I think the biggest part of our health problems is finding the right doctors, ones who will take the time to really listen to our concerns.
Hi every one I am a new member to this sorry group.
It is good to know one is not alone because this whole situation is very depressing.
I have been diagnosed with LC about 2years ago and tried to manage it with a food diary and the odd
Emodium with very moderate success. I returned to my GI doctor about 1year ago and we tried entecort
For 8weeks. At first it did not work but after cutting out gluten it was like a miracle. Now the whole problem has started again and I will be seeing the GI doctor again on aug. 8th - a long wait.
The whole thing is terrible depressing. There is one item however that seems to help and that is
Sprouted ground chia seeds - look it up on the internet - it is worth taking, that and 1 emodium every second day plus a gluten and lactose free diet keeps things somewhat under control.
Karinm
Welcome Karin! I am sorry you are suffering. It can be very frustrating when what you think is working stops working and you don't know why. I was in good shape back in January, with well-controlled symptoms from a gluten- and lactose-free diet when suddenly it all stopped working for me. It turned out that I am also intolerant to soy.
You could be reacting to a number of things--foods, medications... Even stress is enough by itself to throw things off. There is a lot of accumulated wisdom here, and lots of people who manage their disease in many different ways. The best to you as you learn about your body and what works best for improved health.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Just to keep the facts straight - we don't consider this to be a sorry group. We believe that this is a family of some of the most caring, knowledgeable, helpful, and compassionate people in the world. I'll grant you that this disease is depressing, and debilitating, and all that bad stuff, but we have all been where you are, in the past, and we have learned that the symptoms can be controlled, if we are willing to do what has to be done, in the way of diet changes. As you have found, Entocort can definitely help to speed up the process of reaching remission, but diet is key, and if you are relapsing, then something else in your diet is causing it.
If you would like to reach a state of stable remission, then instead of just eliminating gluten and lactose from your diet, try eliminating gluten, all dairy products, and soy, (and all other legumes), from your diet, to see if that helps. Also avoid all artificial sweeteners. And if that doesn't do the trick, consider eliminating eggs, and most sources of fiber, (especially fruit, except for bananas), and all types of added sugar. All vegetables should be peeled, and well-cooked. After about a year free of symptoms, (IOW, after your gut has healed for a while), then it's usually safe to reintroduce, (carefully, and slowly), other fruits, (including raw fruit), raw vegetables, and sugar.
Welcome aboard, and I hope that you can find the key to remission, because many of us here have been able to reach and maintain remission for many years, now, by means of diet changes, alone. Please feel free to ask anything, because we are here to try to help, if you will let us.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
VALERIE!! I greeted Karin but not you! I am so sorry. Must be the migraine thing, I couldn't be that forgetful otherwise, lol. What a wonderful job you have, though it must be hard to sometimes see animals that are sick and suffering, and no way to make them understand. Lots of animal lovers on this forum. Welcome again!!
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Sorry about the cookie - this, too, shall pass. I once popped something into my mouth and then pulled it right back out. It's amazing how much we ingest without really wanting, needing, noticing. (And when everything around is an acceptable food, it's kind of pleasant...)
Karin, hope you're feeling encouraged. For me, eliminated all gluten and dairy was the most important thing, and that is very typical here. After testing via Enterolab, I had to bid farewell also to eggs as well - not everyone here shares this intolerance. When symptoms are severe, I avoid all grains and legumes (and dairy is totally off my menu). Some have fewer intolerances, and some more.
I do agree with Tex - if you've eliminated gluten and are still symptomatic, there is likely to be another food your body would like you to remove from the diet. (All dairy, not just lactose, is the likeliest culprit - soy is another potential problem, and you may have individual specific foods that just don't work.)
Thank you all for your kind and encouraging words. It is really nice having contact with others who go throug the same thing.
Yesterday was a bad day for me but today I am in much better shape.
It seems to be a constant up and down and I am never sure what I ate that brought on the bad day. It seems to me that sometimes I can eat certain things without a problem and at other times I can't . However gluten is out and so is lactose. I find protein powder and ground chia seeds very helpful.
Thanks for caring.
Karin
I am SO grateful to have found this place.
The pic is from my work. I'm fortunate to be the administrative manager for the veterinary hospital at the San Diego Zoo Safari Park, and now and then we have patients I get to love and cuddle. It's one of my favorite pics. 
I am so sorry. Must be the migraine thing, I couldn't be that forgetful otherwise, lol. What a wonderful job you have, though it must be hard to sometimes see animals that are sick and suffering, and no way to make them understand. Lots of animal lovers on this forum.