does crohn's = pain every day?

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dustspeck
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   Posted 10/10/2007 6:07 AM (GMT -7)   
day 11 on the pred, still having bad days with pain & d like yesterday. doesn't seem that low residue/non-low residue foods make a difference either way. and i actually seem to do better on non-low residue foods GO FIGURE!! i do notice most of my pain is usually in the afternoon/evening. i just wanted to know if having crohn's means dealing with some sort of pain every day for the rest of your life? i am just not in remission yet? my bm's are at least almost always solid now, save for one or two days a week, but i am still going like 5-6 times per day.

feel so frustrated today! :(
.: stephanie :.
32 y/0 female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 40 mg prednisone and 4000mg pentasa daily


Barbz
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   Posted 10/10/2007 6:13 AM (GMT -7)   
No you will not be in pain the rest of your life. It will get better it just takes time to get into remission. I know it might feel like forever. I hope you feel better soon. good luck and god bless you. Barb

chroniemomx2
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Date Joined Apr 2005
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   Posted 10/10/2007 6:16 AM (GMT -7)   
I have been on 60 mg of pred before.....maybe you need to up your pred. for a month or so....

Concerned mom!
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Date Joined Jul 2007
Total Posts : 19
   Posted 10/10/2007 6:59 AM (GMT -7)   
Sorry to hear your in pain....My daughter is not in remission
either.....been on pred/pentasa...know GI Dr is putting her
on Humira....Hoping and praying for the miracle drug to stop
her pain......Even when she is eating well, she is doubled over
it doesn't seem to matter...

God Bless!
My daughter was just diagnosed w/CD on 7/12.
She is currently on predisone which Dr. is weaning
her off. Pentasa and Nexium.


dustspeck
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Date Joined Sep 2007
Total Posts : 565
   Posted 10/10/2007 7:00 AM (GMT -7)   
thanks barbz & crohniemom. i am currently waiting for some blood work to come back and i think i will be starting 6mp. if pain continues i am going to be talking to a surgeon about having some of my small intestine removed due to stricture. i am just wondering if maybe the pain is from stricture and not inflammation?

to heck with this disease!!
.: stephanie :.
32 y/0 female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 40 mg prednisone and 4000mg pentasa daily


jdiane
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   Posted 10/10/2007 7:01 AM (GMT -7)   
I noticed on your signature line that you have stricturing disease of the TI and it says scarring. Do you know for a fact that you have scar tissue there and that its not inflammation? I have stricturing disease of my TI too. There is no amount of medication that is going to get rid of narrowing from scar tissue...... NO you should not have to live in pain everyday. Unfortunately, the only way to get rid of narrowing from scar tissue is surgically, whether that be a Resection or a Strictureplasty.

Hope you find some relieve soon!
 
 


belleenstein
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   Posted 10/10/2007 7:48 AM (GMT -7)   
Stephanie

Your pain most definitely could be from stricture. I remember after finally agreeing to go back on steroids many years ago that as the inflammation went down and my bowel movements began to firm up, I experienced episodes of horrifically painful cramps before going to the bathroom. I had had active crohn's at that point for at least six years, and we knew there was a significant string segment in the TI For me the next ten years until my first resection were marked by that balancing act -- how to keep the diarrhea at a manageable level without getting constipated because, if i got down to one or two bms a day I'd be in for episodes of significant pain.

With crohn's I think you always have to balance the level of discomfort you can live with against the cumulative damage from too many surgeries. Everyone has their own threshold. The key I think is to get at the inflammation early so that the scar tissue doesn't build up so fast. I went through three cycles of inflammation, stricture and eventual resection before I finally got the message. I'm on immunosuppressives now and things are finally relatively quiet. The great thing is that I'm now able to eat almost anything (I actually tried popcorn two nights ago), so I know that so far not a lot of scar tissue has built up since the last resection in 2005.

You may be at the point in the cycle where the scar tissue is already an issue. If so you will have to discuss with your docs the pros and cons of continuing medical management or opting for surgery.

Good luck
Belleenstein:

30+ years living with Crohn's.


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 10/10/2007 8:06 AM (GMT -7)   
for me there is pain everyday but nothing too bad w/ the help of meds
Forum Moderator 
I will find a way, or make one.-Philip Sidney
Make sure your suffering has meaning...


dustspeck
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Date Joined Sep 2007
Total Posts : 565
   Posted 10/10/2007 8:06 AM (GMT -7)   
concernedmom - so sorry to hear about your daughter! most the time i can eat, there have certainly been times where i have to put the fork down and walk away. it's usually the pain afterwards that bothers me. from what i have read on this page humira seems to help a lot of people out, i really hope that works for her!!
.: stephanie :.
32 y/0 female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 40 mg prednisone and 4000mg pentasa daily


mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 10/10/2007 8:37 AM (GMT -7)   
redface  
At a minimum I deal with cramps and dx every day, that's on a good day...bad days are fewer now that I've started back on the Entocort and doc has given me pain meds too. I have just came to realization that I my body will never be what it was before the CD, I will always live with the uncomfortable bloating, or diarrhea, or abdominal pain, maybe fissures, fistulas, bowel resections, etc...the list goes on and on. I am luckier than most in that I haven't had any surgeries, no fistulas, etc, so I feel blessed about that, my suffering could be much worse.
To answer your question...for me the answer is yes, you will have to live with some kind of discomfort or pain every day living with CD. Just my opinion. Take care!
 
Marci C.
38 years old, dx with Crohn's disease March 2007, currently on Humira, Entocort and hydrocodone (for pain), and Effexor


dustspeck
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Date Joined Sep 2007
Total Posts : 565
   Posted 10/10/2007 8:52 AM (GMT -7)   
jdiane - after my colonoscopy my gi told me i had scarring & stricture along with a lot of inflammation. overall, i think i have about 8 inches of "diseased" intestine. that's why i am wondering if the steroids are only taking care of part of the problem. i was told surgery is inevitable, he wanted to try medications first though. at this point i am all for the surgery if it means i will have some relief after recovery.

belleenstein - thanks so much for sharing about your stricture experience. i wondered if the stricture could actually be culprit for my continued pain. i feel at this point that surgery is going to be the only thing to get me moving forward and feeling better. i am certainly not against having the surgery done especially after hearing stories like yours. i also feel i will be starting with a clean slate so to speak and will be more aware when i feel a flare coming on and medicate myself when needed. i should have listened to my body years ago when it was trying to tell me something was wrong and maybe i wouldn't have ended up with scarring and stricturing. i guess you live and learn!
.: stephanie :.
32 y/0 female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 40 mg prednisone and 4000mg pentasa daily


JPrice
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Date Joined Oct 2007
Total Posts : 5
   Posted 10/10/2007 9:01 AM (GMT -7)   
I live with pain everyday but I do it by choice. I refuse to take a drug cocktails who's long term effects are unknown. I'd rather deal with the pain and discomfort of this disease than deal with this disease plus many more later in life. Until they find a cause I will not take meds.

dustspeck
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Date Joined Sep 2007
Total Posts : 565
   Posted 10/10/2007 9:04 AM (GMT -7)   
mmmnavy - oh that is terrible news :( i seem to go through spurts of ok days and down right painful days.

mcleaver1969 - phooey not the news i was hoping for :/ i am hoping that if i go through surgery for my stricture that i will have some relief. this is all so new to me i haven't had to deal with fissure & fistulas and really, hope that don't ever have to! you take care as well :)
.: stephanie :.
32 y/0 female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 40 mg prednisone and 4000mg pentasa daily


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 10/10/2007 9:14 AM (GMT -7)   
jprice - you are a tough cookie! i totally understand your fear of the medications and it's long term effects. i have to say since i have been on the pentasa, i have felt better and i think the steroids have helped somewhat along with avoiding some foods. my problem i think is my stricture and surgery is in my future but my gi wanted to try meds first. so what are you doing as far as diet and supplements go? are you finding anything to help you?
.: stephanie :.
32 y/0 female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 40 mg prednisone and 4000mg pentasa daily


JPrice
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 10/10/2007 9:25 AM (GMT -7)   
I have also found that by removing beef and dairy products from my diet my symptoms have improved drastically. I do eat cheese, sour cream, yogurt and butter. I do not drink milk, and I do not eat beef. Pork/Chicken/Turey/Fish for me! I also limit myself to one can of pop a week and try to avoid high fructose corn syrup in foods and drinks. (except red bull, I have to have that!!) My problem has never been a going problem, I get backed up more than anything. I have CD of the TI and a hiatal hernia to boot. I am pretty sure I have a stricture also and that is where most of my pain comes from, I'm sure surgery will be in my future and I will welcome it with open arms, I have a 6" section effected, I am sure I can carry on without it :)

Also remember the more pain you deal with the higher your threshhold for pain will be in the future.

belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 10/10/2007 10:55 AM (GMT -7)   
Jprice how long since you were diagnosed with Crohn's?
Belleenstein:

30+ years living with Crohn's.


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/11/2007 8:44 PM (GMT -7)   
Hi this is the first comment on this site that I have actually been able to relate 100% to. I'm so sorry that you live with this just like I do everyday. Eventhough it is horrible its good to know sometimes that you arent the only one. I run out of my pain meds every month bc they wont give me many, and the past couple of days have been so painful for me. Every morning when I get up my stomach cramps until about 12 noon and then Im okay for a few hours most days, and then in the evenings it comes back. It hurts really bad right before I go to the bathroom and after. I cant even describe the pain it feels like someone is stabbing me to death and ripping my bottom off. I dont know why I would be doing this because its never hurt this bad. I got diagnosed 8 months ago, but they dont know how long Ive had CD. I was also wondering what would be causing me to hurt this bad????? if anyone can help please msg me...Im in this all by myself!!!

dustspeck
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Date Joined Sep 2007
Total Posts : 565
   Posted 10/11/2007 10:55 PM (GMT -7)   
hi kandice *hugs* to you, sorry you have been in so much pain! i mostly have pain between my belly button and my upper abdomen. i also have been getting pains in right side and below my my bellybutton, almost like a line that goes right across. it's so bizarre! and usually i have afternoon/evening pain. occasionally i have pains in the morning or ones that wake me up but not as often. i haven't been put on pain meds yet, i am actually waiting on a call back from my gi. he has no problem giving me pain meds so we'll see if that helps! i am starting to think that my pain is no longer from inflammation but from my stricture. do you know if you have any strictures? what are you taking for crohn's now? i hope you feel better real soon!
.: stephanie :.
32 y/0 female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 40 mg prednisone and 4000mg pentasa daily


HabsHockeyFan
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Date Joined Jan 2006
Total Posts : 3130
   Posted 10/12/2007 6:25 AM (GMT -7)   
dustspeck (is that like "boil that dustspeck" from one of my favorite authors???)
I can honestly say that I lived for many years with no or little pain. For me, I think that is because I had my TI resected in 1990 at initial diagnosis. I am not recommending surgery over other care. I just think that having the diseased section removed bought me a few years of being almost like a "normal" human being. Someone else mentioned that strictures are tough to deal with without surgery....thought I would give you my story. I was so blocked up, that I ruptured and that is why I had the surgery....didn't have a choice. They are considering surgery less and less it seems, but it may be an option if the pain is unbearable and not solved by other means.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 10/12/2007 6:26 AM (GMT -7)   
Hi all sorry to hear about you guys being in so much pain, been there before myself, i feel for you guys. I had surgery about 12 years ago and i'll tell you, i felt like a new man for about 5 years. All i have to say is its worth it, not to be in pain for that long of time. I almost had to get another one, but Remicade saved me and now i feel not to bad. Dustspeck.. in my opinion i think thats your only option, i had my pain in the same spot as you. Done worry about the surgery they drug you up so good now a days you don't hardly feel a thing. Good luck to you.

Post Edited (Erik45) : 10/12/2007 1:15:36 PM (GMT-6)


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 10/12/2007 7:08 AM (GMT -7)   
hi Dustspeck,
that is exactly where my pain has been consistantly for over a year and a half and nothing has helped. drugs took away all signs of crohns, but no help on the pain. sorry and i hope you get relief sooner. email me if you want more info. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


dustspeck
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Date Joined Sep 2007
Total Posts : 565
   Posted 10/12/2007 10:58 AM (GMT -7)   
habshockeyfan ...OMG you are my favorite person ever! no one has EVER figured out why i used dustspeck! beezle nut rah rah!

thank you for sharing your story. i am becoming more and more interested in have the surgery and overcoming my fear knowing that so many people have had such positive outcomes from resections. it's scary but, some days are just so frustrating when you are trying to work with diet and drugs and you think you are doing all the right things and you aren't feeling better. hopefully things will start happening fast and i can get on the road to recovery :)
.: stephanie :.
32 y/0 female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 40 mg prednisone and 4000mg pentasa daily


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 10/12/2007 11:05 AM (GMT -7)   
erik45 - thank you so much for sharing your story. it means a lot to me! success stories are making me feel more confident about the surgery and not scared as much. 5 years is a long time! i am happy if i make it a whole work day without too much pain. thanks again!

yogaprof - that's terrible :( do you have a stricture or might have one? what the heck can still be causing you pain? take lots of care!
.: stephanie :.
32 y/0 female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 40 mg prednisone and 4000mg pentasa daily


Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 10/12/2007 12:17 PM (GMT -7)   
No problem, glad to help. You take care and get well soon. ;)

mama2jmt
Regular Member


Date Joined Mar 2007
Total Posts : 301
   Posted 10/12/2007 12:24 PM (GMT -7)   
Hi dustspeck,it's really good to hear that you are feeling much more confident about resection.Like some of the others,I have also had very good results from having a resection.I had mine about 3.5 years ago,& I am still feeling pretty good,& I haven't felt this good since I was a teen.

The best part for me is being able to eat solid foods w/out keeling over after 2 bites & I no longer suffer from malnutrition.Also,I haven't had any pain or cramping in my gut since surgery.I still have other cd related issues,but they are much easier to deal with when not having constant pain.I am still fairly careful about my diet even though I am able to tolerate many more foods,I am hoping that it might buy me a little extra time.

Chances are that I won't feel so good forever,so I do not take it for granted.But,when the time comes,I will not even hesitate to go through surgery again.

I'm really sorry that you have been dealing w/so much pain,I hope that you get everything worked out soon.Please keep us posted & take care.
~Jennifer~
Official Crohns DX-march 2004.Pentasa 4000mg,B12,Probiotics
         1 resection
Cardiomyopathy DX-may 2004.Coreg,Altace,Digitek,Lasix,Potassium,very low-sodium diet
          

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