How Bad is Your Crohn's?

[manatee]

Hello everyone,

I just signed up on the forums and thought I'd say hello... and perhaps take a little poll to see how your Crohn's is to compare to mine to see how bad (or good?) I'm doing.

I was first diagnosed in 1995 and had to have surgery where they removed about 2 feet of intestine (fun fun fun!). For quite some time I did well but in the last 3 or so years things have progressively been getting worse.

I'm now at the point where I go to the bathroom sometimes 5 times or so a day and it is pretty much constant diarrhea. Many times my food seems to be only partially digested.

The only good thing is there really hasn't been any pain.

The down side is I don't have insurance to be able to afford the many thousands $$$ that it will cost to get a prescription, etc. But, I am getting married soon and will be able to get regular insurance soon... I hope!

So, that's basically my story... how bad is my Crohn's compared to yours? How is everyone doing out there?

:ybatty:

 

[Cara Fusinato]

I'm doing really well. I take only nutritional supplements that seem to be keeping me in check. I can eat anything I want, except some of the tougher vegetables (like bell peppers and string beans). I only hit the r.r. maybe 2-3 times a day unless I eat a lot or certain foods that just send me running (but I have been that way for many years -- only diagnosed 1 1/2 years ago). I don't have pain, except for a small twinge in the side if I eat badly or stress out too much. So, I think I am stable. I could be surprised one day by my strictures just closing off, but so far, so good, I don't feel like it is getting worse. And as to insurance -- thankfully my husband has fabulous insurance.

 

[kskitt]

so far im doing ok,havnt really found any foods that have been disagreeing with me,but that might be the fact that im still only on the steriods (budesonide), but i do take probiotics and calcium supplements.

 

[D Bergy]

I am doing well. No big D or any other issues. Feel normal for the first time in three years.

Just had a big plate of Sauer Kraut for supper. Had a couple big cheeseburgers off of the grill last night. I have no food restrictions. Well, the Sauer Kraut may be pushing the envelope but I am trying to see if I can trigger a reaction.

D Bergy

 

[old hat]

Before, moderate to severe, unresponsive active CD. Then severe fulminating CD with small bowel obstruction and so on.

Quiet for now.

 

[Ani]

I don't really know how bad my Crohn's is. I was diagnosed about 6 weeks ago and so far I haven't gotten it under control. I'm on mesalazine, prednisone, flagyl and pariet plus nutiritional supplements and probiotics. So far the only thing that seems to make much of a difference is the flagyl, as soon as I stop taking it I get worse. But I don't like the flagyl cause it gives me a horrible taste in my mouth that I can't get rid of.

I'm in constant pain and can't do anything much at all. I can sit up for about an hour before the pain gets too bad and I have to lie down. I can walk about 50 meters before I'm in too much pain and exhausted. It's pretty frustrating cause I just don't seem to be getting any better, but the doctors tell me that's part of the disease and I just need to rest.

My Crohn's is in my small intestine. I have scar tissue there, but not bad enough that I need it operated on, thank goodness. I go to the toilet about 3 to 5 times a day. Some days are worse than others.

I have to be careful with my diet, but luckily the foods that upset me are foods that I don't like, so it's easy not to eat them.

 

[HDGirl]

Bad and beautiful

I have had Crohn's more than 1/2 my life.. I have had 7 surgeries and tried many drugs... including 6MP when it was still in stage 3 experiement and Remicade when it was stage 3 experiment. I have even had a dr perscribe marijuana for pain... I live in a state where that's not legal so considered moving... but didn't. How bad is my Crohn's? As bad as I make it... days when I have no energy to fight... it wins and I feel like crying all day in bed (I'm a fighter... this doesn't happen, although I have considered it a lot). On days when I'm in control, I wonder "what is Crohn's?" So you see... I don't think there is a way to measure the serverity of Crohn's. Some people can live with pain and never complain... other prick their finger and they act like they lost a limb. We all have stories... most of mine I try to make funny... cuz if I can't laugh who can? Crohn's is a disease of the doigestive track... as long as we keep it there... we are good... in other words, don't let it control you mind, emotions, or life! Where there is a will, there is a way!

I have a real career but my fun career is in bathrooms... I try to find all of them and I like to evaluate the toliets and tolietpaper... did you know that the TP in Europe is like sand paper and much narrower? The toliets are taller and flush nicer.... In Finland they have boudets (really nice for the sore rear!).

I use the toliet a minimum of a dozen times a day (no exaggeration)... this has been for the better part of 10 yrs, I think of myself as an expert in toliets and tolietry items. Who knows maybe someday my Crohn's will give me the experience I need to start my own company... designing toliets!

Just had to lighten the moment... Oh and I love the idea of knowing what I ate by looking in the toliet... like when I learned I needed to chew french fries more... I know, I am gross... but the more bowel you loose the less time it spends in your digestive trak and the more you know what you ate... We all start with 20-25 feet of total bowel (small and large combined)... amazing what loosing a couple foot can do...

I wish you all the best of health!

 

[hate2hurt]

out of control

I was diagnosed with crohns in 2008 during my second pregnancy. right now i must say my crohns is crazy from severe blood loss abdominal pain i think its causing my depression. i hate the frequent bath room runs blood transfusions and iron for crohnic anemia. does anyone have any thoughts and/or ideas on things that may help im totally open.....

molly
[email protected]

 

[Samboi]

Mine is usually rated mild and well managed.
Every ten years it goes to the severe end of the scale for 6-12 months.
This ten year event usually involves a change of control medication, accompanied by hospital stays, surgeries and generally alarming bowel behaviour.
Even at it's worst - it is comparatively ok when measured against the suffering of others with CD.
I'm looking forward to my stoma finally healing so I can get on with my active happy busy life.

 

[KatieLu]

HD Girl- your post cracked me up! But I totally relate. I too have a fun career in bathrooms. I spend quite a bit of time in them! Gotta scope out the bathroom situation everywhere I go, or plan ahead and dont eat. Immodium is my best friend! I too am in the bathrrom at least a dozen times a day. I wonder how the hell my food makes it through my digestive system so quickly! Sometimes Im half way through my meal and I gotta run off and come back to it.
Anyway to answer the post besides what I already said, my doctor says my crohns is pretty severe, but Ive been pretty lucky so far. Suffered there for a long time before my emergency surgery for an obstruction and then I got diagnosed. Since then I been on Remicaid, 6mp and prednisone when I need it, recently found ulcers, but the pain is not so bad. Not nearly as bad as it was. I get flare ups randomly and havent quite figured out yet what foods do it and which dont, but Im getting there.
Anyway I am totally on board with what HD Girl said, its all about attitude. Gotta stay grateful for what I got and not get down on having this disease.