MC 2 year anniversary

[JoAnn]

Hi Everyone, What a crazy summer! I teach in a year round school and summer is one of my busiest times.I've got a short break and thought I would report in on how I'm doing hopeful that it might help someone else. I have been off entocort for 2 months now and doing fine (as long as I don't travel!) I know immediately if I eat something that I shouldn't. I had been using the generic budesonide that I ordered from Canada and it worked beautifully for me.
I just have to say, Joe, Gabes, and Ant, I stand in awe of your ability to travel so far and cope with everything. I just traveled to the Grand Canyon for a short vacation and constantly worried about things. I was often in the middle of nowhere and wondered what I would do if I suddenly needed a bathroom. Things actually went pretty well except for one morning when I had a bad D attack from something (still not sure what I got into). I had had some trout the night before in a restaurant and asked all the right questions thinking it would be safe, but who knows. I recovered quite quickly, but was on edge the rest of the day. I packed most of my own food, but ate out in restaurants a couple of times. That's like walking through a minefield for me with all my sensitivities. Of course you have them, too, and seem to do fine.
I went to my pcp today for a regular appt. My blood tests looked good, especially vitamin D. I'm at 49.3. I take 5000 IU and it's taken two years to get it up to this number. I do need to increase my protein intake. She took some more blood today to check cholesterol and cortisol levels. I've been taking Red Yeast Rice and Lovaza Fish Oil. I'll let you know if they've been effective when I get those results. She said if my cortisol levels are low, it could be contributing to the inflammation in my colon. I'll share that information when I get it.
I also told her how hard it is to travel and try to eat and enjoy yourself. I asked what she thought about going back on entocort before a vacation and then taper off when it's over just for a little bit of a safety net. She thought that would be fine for me. Any thoughts from any of you?????? I hope I can gain more confidence in doing this in the future. Maybe with some more healing. I'm not sure how much it would help because I still have to watch every intolerance even when I'm on entocort. I do know that I've come a long, long way and would not have even considered a trip a year ago. Hopefully as time goes by, traveling will be less of a challenge. The social part is hard when you're with a group and everyone seems to be able to eat whatever they want.
Thank you, thank you, thank you everyone for sharing your stories, experiences, and wisdom. It's my 2 year MC anniversary this month. You have helped me so much and carried me at times to get me to where I am today. When I was worrying on my trip, I would often think of one of you and what you've faced and it truly helped me to cope and to see the great beauty in the places I visited.
Hope and healing to all of you, Love JoAnn

[Joefnh]

Hi JoAnn. I guess wishing you happy anniversary in this case would not do. As far as travel I certainly read all I could on this site, and asked many questions from our other international globe trotters. Like you I packed my own foods for the trip, and when I got to Brisbane I shopped for my own foods which I was able to prepare in the hotel room that I stayed in that had a kitchenette. Certainly the Entocort helps with the basic symptoms, but still does not allow me to eat any of the foods that I am sensitive to.

Overall paying attention to the foods was key and the Entocort does help with the symptoms overall. I did survive and was tires afterwards, but had a great trip. For me the kitchenette was absolutely necessary. I believe it really allowed me to control my diet and avoid problems. I did eat out at several restaurants which were very understanding of food intolerances and did a great job with my 'approved' ingredients. Ant's can eat / can't eat card is a great idea and was quite helpful.



--Joe

[JLH]

My doctor wanted me to go on it but it contains, soy!

"Do NOT use Lovaza if:
you are allergic to any ingredient in Lovaza, including soy."


Read more: http://www.drugs.com/cdi/lovaza.html#ixzz0xZuWDLwn

[JoAnn]

Joan, I am sensitive to soy, but for some reason this fish oil does not bother me. It might be because the amount is so small in it. I don't know the answer, but I know it has helped me and I don't react to it. I've been on it for over a year now. JoAnn

[JLH]

OK, GREAT. Glad to hear it.

I don't think I am brave enough to try it. Maybe, someday.......

[Gloria]

JoAnn,

I'm so glad that you are doing well after passing the 5-week mark of being off Entocort. It sounds like you have things under control, especially if you quickly get over eating something disagreeable. I suspect that travel and eating out will always be something we undertake with great trepidation.

Thank you for an inspiring, honest report.

Gloria

[mbeezie]

JoAnn,

Ahh, the Grand Canyon - so beautiful. Glad you got to enjoy that. I think we've all had incidents where we have asked the right questions and still got sick afterwards.

You could look up ingredients in any med at www.rxlist.com

Mary Beth

[Polly]

Hi JoAnn,

What a wonderful update! I always found that when I looked back (after each year, for example) I could really appreciate how far I had come. Progress with this disease is often difficult to see when measured in days or months even. For example, it wasn't until 2 years after diagnosis that I fully appreciated the improvement in fatigue. Your patience and dogged determination have been rewarded............congrats.

I see nothing wrong with using Entocort for vacations, especially since you will not change diet. It should provide a measure of comfort and help to control those times when glutening might occur despite your best detective work.

Aaaaah, that old bathroom anxiety. It comes with the territory, doesn't it? I cannot go anywhere without having some Kleenex in my pocket or purse. If I'm on the trail and have no pockets in my shorts, I'll wear a fanny pack just to have a place to carry some tissues. I know we all have at least one horror story to share about not making it to the bathroom on time. Mine: when I was still actively flaring, I was driving into the entrance to my community, and the urge suddenly hit. I knew there wasn't time to make it to my house, so I had to squat right there in the open space. I will be forever grateful that not one car drove by during that time. You do what you gotta do, right?

Keep up the good work. You are an inspiration!

Love,

Polly

[ant]

Dear JoAnn,

I agree with Polly. What a great post! I think updates are very important. (Perhaps these real, live clinical case studies might actually be studies by researchers one day!!. Meanwhile members here get immediate benefit from the information).

If I have this right, you and I must have both got MC at about the same time ?? (my chronic D started in July 2008 although not Dx till Nov 2008). Is that similar to your time frame?

Also when did you start on entocort and how fast did you taper? (Sorry for all these questions. I am sure you have posted all this information somewhere, but I am not sure where to look). It seems you are a little ahead of me since you came off entocort two months ago and I am planning soon to take the plunge

On the "travel with MC front" I think my approach is to be a wee bit 'aggressive'. I have a simple approach: plenty of rice cakes, olives, ham and nuts in the suitcase for emergencies and a ruthless menu selection at restaurants.

When I go to an "untrained" restaurant I show them my card and if they don't "get it" I say..... well.... surely.... you can grill..... pork, steak, lamb, chicken or fish...... and steam..... carrots and/or broccoli and/or cauliflower..... and you do have salt pepper and olive oil in your kitchen, don't you. Yes? well that's great then. And you know how to steam rice...... well let's add that to the meal too. If they cannot handle such a basic order I walk out. (and if necessary consume my rice cakes and ham). But usually they can. When I get to my destination I am blessed with family and friends that know how to cook real food.

All best, Ant[/i]

[Ginny]

JoAnn, great post! Have been thinking about you since you were able to get off Entocort again. Peace of mind is important, so if you believe that the Entocort will help you during your travel; then it will. It is encouraging to see people improve and realize that there is hope; it just might take a little longer for some of us than others. Keep us posted and can always use your encouraging words! Ginny

[JoAnn]

Hi again, thanks all of you for the encouraging, supportive remarks. It helps so much to hear your opinions and experience. I'm glad to get your opinion Polly about using entocort as an aid when traveling. I think it will help me mentally as much as it might physically. Also, thanks for sharing one of your embarrassing moments with MC. It helps to know what others have endured and gone through. You are so right about looking back to measure progress. It's kind of like watching grass grow Finding your own path with MC is a very bumpy road with a lot of starts and stops, two steps forward, one back, fall down, get up etc. Ant, here is a short time line of my MC experience:
2008 June-July- Almost constant D (thought it was from thyroid meds)
2008 Aug-Mentioned it to GI as I was going in for colonoscopy-did biopsy-found MC
2008 Aug-Nov-Treated with Asacol-became sicker and sicker-had to take medical leave.
2008 Dec.-GI suggested PB treatment, didn't help. Found this board and started gf diet, did Enterolab
2009 Jan-Received Enterolab tests-Shocked to find I was gluten, dairy, soy, egg, and yeast intolerant.
2009 Feb-Aug-Took full dose of Entocort (9mg) with diet restrictions. (6 months)
2009 Aug-Sept-Started tapering Entocort, very bumpy experience, Gloria held my hand through it
2009 Oct-pcp dr added Dmannose to treatment, had amazing results while tapering off, ended Entocort.
2009 part Oct-Nov-part-Dec off entocort and doing great.
2009 Dec-ate some tainted turkey soup, flu, immune system went into high gear, started a flare.
2010 Jan-pcp put me on low dose prednisone, 5 days, (stopped the flare immediately) shifted back to full
dose of Entocort with Dmannose.
2010 Jan-April (I think) took full dose
2010 April-June started tapering, listening to body.
2010 July-Aug Off Entocort
I guess that wasn't very short, but it's as short as I can make it. I have noticed that everytime I taper down, I have a few rough days, some kind of an adjustment. I did/do use PB and Immodium when hitting rough spots. I don't know why the Dmannose helped me so much at times, but I know it did. I don't use it now because I don't seem to need it anymore. It seemed to really help at times maybe because of where I was in the healing process. I certainly don't consider myself out of the woods yet. Fingers and toes are still crossed. If I get through the rest of the year without Entocort, then I'll shoot off some fireworks. We had such a good time at the Grand Canyon (inspite of all my insecurities) that we booked a cabin for next year. My goal is to be well enough and brave enough to ride a mule on one of the trails into the canyon. Take care everyone, Love JoAnn

[JoAnn]

Ant, I forgot to mention that I need to work on being as assertive as you are when dealing with restaurants.
You're my new role model in that department JoAnn

[Gabes-Apg]

Joann

i have found that being confident in my request with the waiter, having the chef card that means they dont have write down the instructions works really well.

i was at a work function last week with a very limited menu and after the strange look i got for my request i puffed out my shoulders looked the waiter in the eye and said
'Yes, i want a steak on its own no sauce, no chips, no salad Thank You.'

the times i have asked if they can do this or that, is when confusion and uncertainity begins. If i clearly state what i want with confidence then it happens.

my theory is, i am paying for this it is my choice what i eat and most of all i dont have to explain or justify my request to anyone!!!

[Gloria]

JoAnn,

Thank you for posting a timeline of your progress. It's helpful to see how you've progressed and recovered from setbacks. I'm so happy that you are in remission without Entocort. Your trip to the Grand Canyon sounds great and I'm sure you'll be able to enjoy next year's trip.

Gloria

[JoAnn]

Thanks Gabes for the advice and thanks Gloria for your continued support. I hope your MC issues have stabilized and you have some feelings about how to deal with it in the future. No one has worked harder than you to find remission.
Ginny, how are you doing? Thanks for your kind words and support. You always give me a boost when I read your posts. Hope things are going well for you.
JoAnn