Newbie in St. Louis

[Larry n Louis]

:sign0144:

I would like to start off with a big THANK-YOU all for this site and participation. I have been reading it for several days before joining. Your support for each other is fantastic.

OK, a little about me. I have just been diagnosed with Crohns in my small intestines. It came more of a relief than a shock. I finally had some answers to what had been going on for a very long time. It wasn't the diarrhea that finally made me get some answers and hopefully help but the pain that came along with it.

IBD seems to run in the family as my older brother was diagnosed with Crohns about in his mid to late 30's. My mother had UC that helped contribute to her death at an early age of 35. Even with all this in the family I know very little of Crohns.

I have been on Asacol for about a week with only having my worst flare up to date. My hope was high but my experience this week has been very low. Being caught away with out a change of clothes was the top of the list this week. :redface:

I'll keep this short as I'm not much of a talker as much as a listener anyway. But I do feel that I am among comrades. I look forward to future posts.

 

[KCMike]

Hello Larry! You've come to the right place. I live in the Kansas City area so we aren't that far apart. Your situation is pretty much par for the course. Crohn's/IBD affects us all in different ways but we all suffer a great deal. In my situation I wasn't officially diagnosed with Crohn's until a couple of weeks after my resection. Apparently I had it several years prior to surgery. During flareups I always wrote it off as a virus or food poisoning. They would only last for a couple of days at a time. I mean how could I possibly have a disease when no one in my family has been diagnosed with Crohn's? I've never smoked cigarettes(I have been known to smoke a cigar on occasion), I've worked out on a regular basis most of my life(I've run several marathons, 10k's and half marathons). I eat well. Apparently none of that mattered. I was destined to get Crohn's. What seems to be the common denominator with most people in this forum is that we can all link flareups with high stress situations. I hope things get better for you.

 

[Sojourn]

Welcome to the forum. Glad you found the site. There is a lot of wonderful support here. Hope you cand find a medicinal and diet regiment that you can manage your symptoms with. As you'll see here, it's different for everyone, but lots of info to go on.

 

[Cara Fusinato]

Welcome Larry -- anytime you wish to vent, ask questions, toss ideas around, we are here. It's a great forum with great contributors.

 

[Kev]

Hey Larry.. Welcome aboard. Talk, listen, contribute, read.. whatever gets you thru a day with this. Reading posts on here has an immediate beneficial impact. It proves beyond a doubt that you are not the only one going through the whole IBD nitemare

 

[jjs16]

Hi Larry,

Welcome

Clothes selection and "back ups" have become a regular part of my life.

You get real good at planning routes, driving or walking and not being to embarrassed to ask in any establishment you happen to be where the
bathrooms are.

I remember being at my son's school when he was 6 and I had to make a quick stop, I forgot the toilets are made with children in mind and they had that nasty fold out cardboard like TP which is neither comfortable or absorptive....ah memories.

By the way the Cardinals have the best logo in baseball.

J

 

[tonya_n_ky]

:welcome:

 

[Larry n Louis]

Journal?

Thanks all for the feedback. I'm doing better at the moment and still learning what to not to eat. I have been told about keeping something like keeping a diary or journal of my daily in take and out put. What are your thoughts in what might be a good thing to use or just write it all out in a memo type book? Maybe I should have posted this question elsewhere but this is a learning process too.

 

[vickyoddsocks]

Hi! Welcome!!
I was posting questions all over the place before i figured it out! lol!
Glad to hear your feeling a bit better!

 

[Kev]

Yeah, being new to the disease and to posting here on the forum can be a steep ole learning curve.. Maybe we should post a tutorial on posting on the forum? Anyway, a journal, record or diary of input/output/symptoms, doctor visits, reports.. all are great ideas. As how/what to use.. whatever you are comfortable with. Scribbler/notebook will do. Being an old computer geek, I use a spreadsheet.. it's searchable, I can cut and paste... sort, query... lots of stuff that's nice, but not really necessary. But thats just me. Being able to tell your doc how many times you had a fever, how hi it was, and how many b/r trips you made, how much blood you lost, meds., etc., it all helps combat this disease... it gives you & docs a firmer idea of how you are, and it gives you something to do when you are hurting, emotionally or physically. There'll be times when you need to do something, just to take your mind off things, or pain, or give you the sense you are doing something... something to fight this illness. At least, thats my take on it.

 

[Ilysha]

Washington U

Hi Larry,

I have Crohns and have a cousin with Crohns who grew up in St. Louis.

Washington U and Barnes hospital have some top notch doctors doing Crohns research. Hope you are able to tap into that.

With well wishes,


Ilysha in LA

 

[Larry n Louis]

Thanks All,

Kev,I too was also thinking somewhat of some kind of data base or even a spreadsheet but wasn't too sure what all to included. I didn't know if there was some decent software that would do it with a little massaging. I had a rough start shortly after starting my Asacol. Let me rephrase that, I though it was rough but it wasn't as compared to many of you here. Most here are much younger than myself but yet have been through so much more trying times than my own. I see that I'll have a lot of help with my new found family. I'll have to check into Wash U. too because of Ilysha. This ol' dog does have a few new tricks yet to learn, including to share. Thank you Tonya.
----Hugs to you All----
Larry

 

[Ilysha]

Good luck, Larry! It may take a while, but I'm sure you'll find your way. It sounds like you have a good start so far!

 

[Kev]

Hey Larry.. it's pretty individualistic.. Meals, meds, bleeding episodes, unusual pains,
whatever... Like, back in July, I went to the ER after an allergic reaction to Imuran. A doc asked about lot of stuff.. I gave him a thumbnail of my disease, and my meds, + I mentioned having had a fever... He asked me how hi a fever, and I had no idea. So, long story short, I added a column to my spreadsheet, and these days, if I notice a spike in my temp, then I add it in.. What I like about it is that I can run a sort on my diet, then look at my symptoms, see if there's any notable changes, or vice versa. It helped me pinpoint my trigger foods and other episodes.
As for special software, I just used a spreadsheet, but anything would do the trick