The World Really Isn't a Toilet!!!

[grannyh]

I, too, admire beyond what mere words can convey, those who have had such wonderful success with diet alone in treating their illness.

I guess I am one of the lucky ones who can eat just about anything now that I have been on entocort. I really can't think of anything I want to eat.. that is an absolute no..no.... as long as taken in moderation.
grannyh

[Joefnh]

Granny I really wish I could have more dietary choices... who knows maybe after some more healing has occurred. Last weekend I got 'soyed' (I think) from the GF pancake mix and unfortunately this week I am finding I cannot tolerate my favorite snack, the GF Aussie Tim Tams. They have a bit of soy lecithin in them and after last weekends episode I can no longer enjoy those... Oh well live and learn

--Joe

[Rosie]

Joe, only us here on the forum can appreciate how crushed you must feel about not being able to eat your Tim Tams, one of the few "treats" in your diet. From what Tex has said, the soy antibodies go away pretty quickly once the soy is gone, so maybe in a few weeks you can enjoy them again.

You admire my being able to control my MC with diet alone, but I am in awe of the grace and courage you have shown in dealing with the double whammy of MC and Crohn's!

Rosie

[grannyh]

Joe, how long have you been on entocort? It took me years to be able to "anything I wanted to".
grannyh

[Joefnh]

Rosie thanks for the kind words. If it was not for the help that I found here I don't think I would have been able to 'choose my attitude' as it were. I have the option of looking at this as a negative or a positive. Since I can't change what reality is, I have decided to embrace it and enjoy all the wonderful people that I have met here.

I hope i can enjoy the GF Tim Tam again, I will wait a few weeks before trying again.

--Joe

[Joefnh]

Granny I have been on Entocort since last April, but given the jejunum Crohns I have had to transition to Imuran. I actually just took my last Entocort yesterday. Entocort does not effectively treat the middle portion of the small intestine.

The Imuran seems to work quite well and seems to handle both the CC and the Crohns.

--Joe

[grannyh]

Joe,
I hope the Imuram does the job for you. Adding things back to what I could eat took a long time and I know I was on 3 entocort a day for several years...

You look quite young in your picture.. I might have had some misgivings about entocort had I been half my age or still young enough to be able to have children. Having my life back, in the years that aren't as golden as many of us thought they would be.., is something I am thrilled with.
grannyh

[Kari]

Joe - I'm in total agreement with Rosie's words about you - the way you deal with your "double-whammy" is awe inspiring. I liked the way you so methodically went after an explanation for your latest flare, and shared it with all of us here. It is encouraging to know that there are logical answers for what on the surface appears to be quite inexplicable. Anyhow, I'm glad you have a full-time nurse to look after you:):):).

Rosie - I'm happy to know that you've stuck it out with diet alone for a lengthy period of time. I often wonder if I'll be able to pull it off, but being in a relatively stress free situation at this time in my life helps a lot.

Warm regards,
Kari

[Joefnh]

Granny I'm creeping up on 50 and really don't think more kids are a consideration. My basic reason for the Imuran is to treat the Crohns for if left untreated I have a very high likelihood of needing surgery. So for me treating this now is the best option. The current treatments are diet, meds and acupuncture

Kari I am 'Gobsmacked' (cool word I learned here) I have never thought that I handled this in any special way, just the best way that I can. To be honest though, the reason that I have done so well is due to all the kind people on this site. The support and kind words have made dealing with this in a positive way possible. I did not choose these diseases, they chose me, the only question now is how I deal with it.

Since I cannot change whats happening to me, I can change how I think about it.

For me I do not see this as a double whammy, as they both were diagnosed at the same time and frankly they have more or less the same symptoms (pain, fatigue & D). I think the Crohns can generate more localized pain and potentially be damaging, but the CC can be more of a problem with the dietary restrictions and it can cause more severe cramping.

Thanks again for all the kind notes.

Yes Kari having a full time cute blond nurse is quite nice ... even if she does have 4 legs and wags her tail LOL.

Nurse Nestle had a great time today 'helping' with the leaf raking... Pictures to follow

--Joe

[Gabes-Apg]

Bob
welcome to the group - gday from australia



lots to read and learn, and this is a great group of people.

take care

[tegsaskid]

Thank ya'll once again! I really appreciate all of your responses and knowing that there are others out there dealing with MC. I'd rather have been dead when I first had symptoms. I've gone totally gluten free about a month ago and my stools are getting "better". I also have to avoid coffee which magnizes me to the thrown within about 3 to 4 hours. Hearing what some of the rest of you've done I guess I need to start cutting out dairy. Blessings and Merry Christmas Bob

[Bifcus16]

Hi Bob,

I noticed you didn't get a lot of responses answering the questions about normal BMs.

Well, I certainly now have normal BMs most of the time. I have only had serious D a handful of times this year - which is not that different to normal people. Diet only, no drugs. I am more aware now of any changes in my habits - any little variation makes me think about what I have eaten.

Most of the people who reach this stage tend to drift away from the board, which is why you don't get so many responses from people who have no D or C.

Lyn

[hoosier1]

Joe,

You are the youngest looking "pushing 50" year old I have ever seen. And with the Chrons and the MC, you have every right to age quickly :)

I feel about 60 years old, but I am 44. I have forgotten what it feels like to be my age. I am very tired most of the time.

Do you have to be on Imuran for the rest of your life, or am I thinking of Remicade?

Rich

[Joefnh]

Rich I am actually 45 but getting there fast enough and yeah I feel about 60 as well. With either Remicade or Imuran they both are capable of being taken for a long time, but you don not have to. My current plan is to take the Imuran for 1 year and then assess the Crohns and MC and hopefully manage both with diet alone.

Overall it has been a miracle med for me although I do need blood tests often to monitor platelets and white blood cell counts. I started with a WBC level of 8.5k and this went down to about 4.5k and then back up to 6.2k. Last week my doctor had me increase the dose from 150mg / day to 200mg / day, with the goal of keeping the WBC counts at a level between 4.0k to 4.5k

Overall this is the best I have felt for at least 10 years, no pain or D as long as I stick to the diet

--Joe

[hoosier1]

Joe,

That's really good news about your feeling well. Finally, huh? You deserve it, my friend. You have quite a cross (actually, a couple crosses) to bear. I appreciate your posts and your perpetual positive attitude. In case you have noticed, I am a "glass is half full" type of person.

I didn't know Imuran was immunosuppresive? My WBC runs so low that I would be afraid of taking any type of drug that lowers it.

But I am very glad you are doing well.

Rich