don't know what normal is anymore!

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gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 5/16/2008 12:33 PM (GMT -7)   
I find I get jealous of people on this site when they say they are in remission, because I wonder how I would define that. My GI thinks I'm doing great because my blood work is normal, and I move from constipation to normal bowel movements,,,doesn't sound so bad at all. But the thing is, I have to follow the most neurotic diet of almost no fat, no fresh veggies, and very bland food in order to stay stable, and I have some sort of crampy pain, usually lower bowels every day. I have recurrent dreams of eating in fabulous restaurants!!! I guess I just wonder if I should just try to adjust with this level of daily discomfort and accept it, or if I should be pushing for something better, I am now only on Pentasa for the Crohn's. Maybe this is all just IBS, but I don't have a clue how to figure it out!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


MaggieLou
Regular Member


Date Joined Apr 2008
Total Posts : 31
   Posted 5/16/2008 12:40 PM (GMT -7)   
I think "in remission" is different for every person. But, I also think that even when we are "in remission", we still have issues. I always have pain and tenderness in my right side. I have always had D. In remission to me means I feel just a little better.

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2689
   Posted 5/16/2008 12:41 PM (GMT -7)   
Heck I'm jealous of you right now! LOL I had remission for two years, so I guess I shouldn't complain. But this having D 3-4 times a day, and that scary swelling thing that happened to me this month, is for the birds! I'd love to go back to where I couldn't eat certain things without getting sick, but at least it wasn't like this.

Hard isn't it? Doctors seem to be happy if your blood tests look good, and if your not having 10+ diarrhea movements a day. Well, I'd like to see them feel "normal" and lead a normal life like this!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 5/16/2008 1:15 PM (GMT -7)   
gumby, just because one is clinically in remission doesn't mean they are well.  I am clinically "in remission" based on my CDAI but am still having a lot of arthritis problems caused by the Crohn's.  Cimzia, arthritis meds and NSAIDs together not taking care of the arthritis pain and now I have 3 ulcers caused by all of the meds and acid reflux (even though I've been on reflux meds for years), so I'm having a lot of stomach pain.  Can't sleep well due to it and everything I eat (or don't eat) hurts.  My blood work is normal now other than sometimes elevated liver enzymes, which recently caused me to have lots of tests, one of which caused pancreatitis and a hospital stay.  I agree with MaggieLou that remission is different for everyone and that we all still have issues while in it.  While it's true that we are better off than not being in remission, I still don't know that it's something good enough to be envious of.          
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 5/16/2008 1:28 PM (GMT -7)   
I've been in so called remission for a long while now but I still have issues and smaller flares. I still have to watch what I eat, although
the only thing I think that really bothers my crohn's is too much sugar. I can drink milk, eat ice cream, etc.. I've very lucky in that aspect.
But with a recent flare and lots of testing last week, I have since found out that I also have Inflammatory Athritis. I've been having a lot
of joint pain and its hard for me to walk. So like the others said, we may be remission, but we still for the most part have issues.

Robin
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/16/2008 1:36 PM (GMT -7)   
I had major resectioning (4 feet) in 1992. Since then I have not had a normal bowel movement. It's pretty normal for me to have the BIG

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 5/16/2008 1:38 PM (GMT -7)   
Thanks everyone. I know I shouldn't complain...I'm much better than when I was very sick. But I never have a single day when I feel totally fine and I really miss it! Maybe it's time to start accepting my reality...I keep searching for the magic combo of diet and meds!!!! Thanks for the support!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/16/2008 1:44 PM (GMT -7)   
Hey, I haven't known normal in 17 yrs straight now...never been in full remission the entire time since getting sick.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2689
   Posted 5/16/2008 1:55 PM (GMT -7)   
Don't feel bad, we just want to be like everyone else. And we should be. We should be able to eat like everyone else, and not have to worry about where the nearest bathroom is. We have every right to not be accepting of what they consider "remission". Quality of life is everything. I don't expect to see what was normal for me before Crohn's even again, and it took a long time for me to get over that (and sometimes I'm still not over it, may never be!).
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


Robin
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/16/2008 2:33 PM (GMT -7)   
Whoops!

I had major resectioning (4 feet) in 1992. Since then I have not had a normal bowel movement. It's pretty normal for me to have the BIG D 5-6 times per day when I'm in remission. I have to go in for IVs 1 to 3 times per week for hydration and magnesium and have B12 shots once per week. It's all just something that I have had to learn to deal with; I am blessed with still being able to work and enjoy my life. I just can't let the restroom issues control my life or define me as a person.

I consider myself flaring when I get distended after eating, bloody stool, more frequent trips to the restroom, faster evacuation, and PAIN. I'm in really bad shape when the vomiting starts because that usually means partial obstruction.

Robin

CheerDad
Veteran Member


Date Joined Apr 2004
Total Posts : 2284
   Posted 5/16/2008 9:26 PM (GMT -7)   
I always define normal as being able to do the things I choose to do. Even in the middle of a flare I still consider myself normal, cause I refuse to be a victim of this disease any longer. It isn't easy, believe me it has taken almost 4 years of therapy to get there. Even said, there are times I fall back into old thought patterns. Good luck and hope you find the answers you are looking for.
We can respond to irritation with a smile instead of scowl, or by giving warm praise instead of icy indifference. By our being understanding instead of abrupt, others, in turn, may decide to hold on a little longer rather than to give way. Love, patience, and meekness can be just as contagious as rudeness and crudeness.

 
Randy

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

Dx'd with Crohn's at age 12. Symptoms since age 5.

Learning to live with this Disease rather than be its victim after 36 years.

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