Crohn's Disease Forum » Your Story » Will I ever live a productive life with crohns>


03-07-2019, 12:03 PM   #1
miskuhn82
 
Join Date: Mar 2019
Will I ever live a productive life with crohns>

I have been sick for around 18 years with ulcerative colitis and diverticulitis. I was diagnosed with Crohn's disease around 2 years ago. The pain in my abdomen is excruciating when I have a flare up. Am I in this battle alone or is there anyone else going through this same thing?

Last edited by miskuhn82; 03-07-2019 at 12:21 PM.
03-07-2019, 12:38 PM   #2
MarkStrobel33
 
Join Date: Jul 2017
Location: Surprise, Arizona
I was diagnosed with Crohn's disease over 18 years ago. Now, without a colon and with an ostomy bag, I haven't had a major flare up since I began entyvio infusions a couple of years ago. However, I have excessive fatigue and extreme loss of energy that my doctors have been unable to explain. For you, I think that it might be getting you on a medication that works. Changing meds can be frustrating since many Crohn's meds such as biologics can take quite a while to kick in. The good news is that there are several meds available with new meds on the horizon. So, work with your doctor to find the right med for you.
03-07-2019, 01:17 PM   #3
Lisa
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You are definitely NOT alone.....

If you are still having flares, have you talked to your doctor(s) about that and whether your medications are still working for you? Speaking of which, can you share what you are on and/or have tried in the past? That would give us here a better picture of what you've tried and maybe someone has some additional input.....
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
03-07-2019, 08:53 PM   #4
cmack
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Yes, yes you can! It's not easy, but it can be done for sure... Never give up. Talk to me any time, in any way.

All the best,

Chris
03-11-2019, 04:41 PM   #5
GI Jane
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We have definitely all said that same thing....well mostly you're making me do math....wait.....wait....nope 14 years here :-) The only way I've survived is humor. Had a shirt for quite awhile that said "Shit Happens" my inside joke to myself and others thought it as something else....yep humor and just driving on.

I believe in the military quote of "suck it up and drive on"....well mostly....sometimes I just collapse and lose it for a few days. Then I say what is the option...for me at least give up or just keep going for my kids and grand kids and well myself. Find thing that bring me joy and distract me. Distraction is my biggest help....go in my yard and do some work out there. I've gone from a lot of Codeine and Tramadol a day to just one Tramadol every 3 days or so depending. I've learned to put up with so much pain like all of us here....but there is days I pray for death still on the toilet....but then it gets better.

I've learned to journal and log all the foods that send me into the porcelain devil. I know if I say screw it and have a wine or ice cream bar with family I will regret it; but even then I sometimes do it for the hour or so I got joy from it. If I say huh that food sounds good I haven't had it in awhile...loud bells start going off in my head saying NOOOOO.

Keep fighting, I broke down and got counseling every other month to just touch base and got a sleep aide to help with the depression. They are also changing my medication AGAIN to Stelara from entivio which I started getting way to many side effects, same thing happened with Remicade with me....but hey maybe this one is the winner and it's only shots after the first infusion. This is huge since I have TINY veins that they have a hard time getting and run when I come through the door and say "Not It" to each other. My record is 10 times before they got me ya threatened a port they did.

Take heart, we are here for you.
03-14-2019, 11:46 AM   #6
Bufford
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Most people who have this disease have developed strong coping skills due to the difficulty and discomfort that comes with it. When I flare I have often asked myself what are my options? The answer has always been to keep on going through those rough patches in life, for better will come along at some point.

When things do improve I take advantage of it by doing the things I want or need to do, and perhaps cheat a little bit to enjoy life.

I know its a difficult life that I must lead when compared to others who are healthy, but I still feel blessed to have a life to live at all despite the pains.
03-16-2019, 01:56 AM   #7
MizzSarah
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What is productive, really? Is productive, adulting because I feel like Iíve been doing that for a while. I continue to press on with the hope that I have another good dayó-and at this point I almost feel like Iím in a blur of time. Is simply trying to be a fully functional 26 year old being productive?

Purpose for my life with this disease is still beyond my level of understanding.
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03-16-2019, 11:13 AM   #8
Bufford
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MissSarah, hang in there, I recall going through some dark valleys of life when I was in my mid 20's. I had to deal with very painful rectal abscesses, and in those days they did only used a local anesthetic which was very painful when they lanced them. Doctors did not know much about Crohn's back then leaving me without treatments and having to keep up with my job or I would loose the house.

Long story short, life was not easy and Crohn's led me into an early retirement. My condition is better managed now. Was all the pain in life worth it? Yes it has been. Life is not always fair, but I only know one thing, and that is to keep on going for there is always the chance of something better coming around. My experience is that better does come as one gets older. Like wine, life improves with aging.
04-13-2019, 06:31 PM   #9
D Bergy
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It is possible. I had plenty of misery and just about died of sepsis due to fistulas. That was 2012. Its now 2019 and I have no hint of it since that year. You can find your way through this.

Dan
04-14-2019, 10:30 AM   #10
Bufford
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I went through the same thing with sepsis nearly 20 years ago, and came home with a souvenir from the hospital in the form of a colostomy bag for life. I believe that was the low point and the darkest valley I had to cross in my life time. The road ahead has been rocky at best, but it has been uphill since then. You are right D Bergy there is a way through this, and the disease makes many of us more determined to be a survivor and beat this scourge.
04-14-2019, 05:15 PM   #11
D Bergy
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Thats rough Bufford. I woke up after surgery with an illiostomy bag.
Luckily it was reversed months later.

We rearranged my life also. Just realized it was time to quit burning the candle at both ends.

There is a life after Crohns. We just are never sure where it will bring us.

Dan
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