Where is your crohn's located and how do u deal with the pain?

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Regular Member

Date Joined Jul 2005
Total Posts : 393
   Posted 4/26/2008 7:31 PM (GMT -6)   
Soooo the Crohn's was always in my colon and I thought that was bad...little did I know. Recently a ct revealed my Crohn's has moved into my small intestines and ileum....and boy the difference in pain. I have pain now so bad it makes me want to vomit..I sweat and it feels liike something is ripping my stomach out. At least with the other kind, I could go to the bathroom and relieve myself of some of the pain and cramping...now I have SHARP SHARP PAIN and nothing makes it better. I feel any amount of gas I get and if I try to pass it..its like it won't come out. I feel like Im dying. I never want to eat cuz 20 minutes to 0 minutes into eating Im in terrible pain. Anybody have this same thing occur??  Where is your Crohn's and how do you deal with the pain?

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 4wks, 20mg Pred, Asacol, 75mg Imuran, etc.

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Date Joined Feb 2007
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   Posted 4/26/2008 9:17 PM (GMT -6)   
Good Evening,  Well, I never used to take anything for pain.  But my last bought was soooooo bad the doctor called in Vicodin.  I used it when I needed it and then stopped.  But when I needed it, it did the job.  Nothing is worse than pain you can't tolerate.  You should have a talk with your doctor.  I also, ice or use heating pads depending on where the pain is.  I hope you feel better.  HUGS

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 4/26/2008 9:38 PM (GMT -6)   
My Crohn's is entirely in the large intestine, but I can get some pretty bad pain that is not relieved by bm. Actually, passing stool is incredibly painful (have vomited from pain too many times).

It seems I have different types of pain. Pretty much all of the time there is a constant ache/hurt below my pelvic bone. That is from the rectal region being so inflamed. Then other times I get stabbing pain other places along the colon route. Sometimes I also get a tender/more constant pain on the upper right, where I form a swollen spot (I can feel to the touch).

Tylenol really doesn't help for me. I use a heating pad most days and take Vicodin when I need it. I am thankful for that med because I am able to focus on other things more when I am not hurting all the time!
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl

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Date Joined Jan 2005
Total Posts : 8616
   Posted 5/1/2008 4:18 PM (GMT -6)   
I wanted to bump up this topic as it sounds very helpful. And . . . inquiring minds want to know!

I've had LL LR UL UR . . . never quite sure what causes what put the worst pain feels like glass/razor in there . . . ("shhhhhhhhhh" all is fairly quiet for now)


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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Regular Member

Date Joined Mar 2008
Total Posts : 134
   Posted 5/1/2008 4:59 PM (GMT -6)   

Hi!  I agree with the others--call your doctor!  You might even have something other than Crohn's causing the pain!  Also, pain meds were created for severe pain such as yours, so try to get some!  Heat/cold is good, deep, reqular breathing is good (if you can), but pain meds are the best.  Hopefully you won't get a doctor that equates pain meds with "drug addicts".   Go for it!  hang in there, there are many of us who have also experienced what you are suffering, and we are all here for you.


not creative
Regular Member

Date Joined Mar 2007
Total Posts : 466
   Posted 5/2/2008 12:12 AM (GMT -6)   
As I understand from my last Colonoscopy, I have it in the last 3cm of my rectum. Who knew that three cm could cause that much frickin trouble. I'm not too familiar with the specifics because really I wasn't previously aware I should/could ask (dumb, I know!)
I don't do much to deal with the pain besides soldier thru, as if I had some other choice!
Laurenne, 23 Student @ University of California, Davis.
Dx'd w/ IBS and CD in 2002
On Humira, Strattera, Zoloft, (Multivitamin, Flax Oil, and Omega complex when I remember.)

Regular Member

Date Joined Apr 2008
Total Posts : 30
   Posted 5/2/2008 12:36 AM (GMT -6)   
I am so sorry that you are having such terrible pain! You should definitely talk with your dr. Hopefully they will be able to give you something to help! I have Crohn's in my colon and small bowel. I am currently going through a flare-up with just the small bowel involved. When I'm not stuck in the bathroom I honestly sleep a lot when I am in pain. It's my way of escaping. I totally agree with you that having the flare up in the small bowel is much more painful than when it was mostly in my colon! It lingers on and on and there is not much you can do to relieve the pain except not eat....and I love to eat! My dr. gave me Bentyl to take and it does seem to help some. I hope you feel better soon!
30 years old~ Diagnosed in 2000 with Crohn's~ Currently taking 3000 mg Pentasa, Prednisone, and Bentyl.

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 5/2/2008 11:42 AM (GMT -6)   
Yeah... Sounds like you need to get a hold of some pain medicine... (and get checked out by the doctor to make sure nothing really serious and major is going on...)

Until then... What others have suggested can help... A heating pad (or something similar... hot water bottle... sometimes, a hot bath, though I don't recommend that...) can help dull the pain... It won't get rid of it... but at least, it won't be as bad... and any kind of relief can be good...

Also... Maybe you could find one of those massage cushions with the removeable vibrating disc.... I've recently used one of those things on my tummy... and it's also good in helping dull the pain... especially if you have cramping pains... (I guess the vibration helps you relax... keeps you from tensing up too tightly)...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Regular Member

Date Joined Sep 2007
Total Posts : 182
   Posted 5/2/2008 1:41 PM (GMT -6)   
I feel your pain and I am sure lots of us on here do! I am so sorry! Your situation sounds sorta similar to mine. I have Crohn's everywhere BESIDES a small part of my small intestine but other than that, I have it in my whole colon and my intestines, etc. Yuck! I would definitely call your doctor ASAP. And of course get on some pain meds. Of course they all work different for us all. I personally take percocet. It also helps relax me and I think that is a huge need when on pain. Relaxation (if possible) and at least a little relief. Don't be worried about being on pain meds. I think it is more important for the body to be on them rather than be in pain. It sucks to have to be on pain meds, but so does this illness. It is so VERY painful sometime and hard to explain unless you have it. Also "spasm meds" help for some people and not for others. I know for me, they do not work. BUT for others they do. Most of them do melt under your mouth. So talk to your doctor about that and see what he may say. If you need extra support please feel free to e mail me: brittanyda@comcast.net

Also: Try a heat pack with rice that you can put in the microwave. A lot of times they have fabric on the outside. That can maybe relax you a little bit and help you sleep or rest. And then take baths. Not sure if you do that. I do every night. It is very temporary but it helps in some ways.

Thinking of you and totally understand what you are going through!

Good Luck and keep in touch and keep us all informed on how you are doing!

I have had Crohn's since I was 21 years old and I am now 27....


Regular Member

Date Joined Nov 2007
Total Posts : 137
   Posted 5/2/2008 2:23 PM (GMT -6)   


I also have pain in my lower right abdoman, and I do take pain meds. I have a few ways to help cope with the pain, I sleep more, eat less. But I know thats not the cure and it's horrible living like that. I am currently in between crohns meds so things are real bad now, it took all I had just to get out of bed today, hope things get better.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 5/2/2008 3:23 PM (GMT -6)   
like I swallowed glass
sharp pains where it comes into contact with the bones hips and ribs...
No tight waisted pants...
Forum Co-moderator
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 5/2/2008 2:29:16 PM (GMT-6)

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 5/2/2008 6:23 PM (GMT -6)   
The only reason I don't recommend baths is because I think my soaking too much in the tub of hot water led to me having a urinary tract infection (which I think must have aggravated my Crohn's disease because I got into so much pain... worst pain of my life... it was awful)... So...

If you are going to take a hot bath to help relieve pain... Just be careful. Remember to use the bathroom before and after you take a bath to try and push the bacteria out and whatnot...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 5/2/2008 6:42 PM (GMT -6)   

Mine is in the terminal ileum - the pain is unbelievable when I'm flaring. I buckle over, get chill bumps all over my body, I can't speak, and my eyes swell up with tears. When i'm flaring that happens every 10-15 minutes...

Vicodin takes the edge off - I have a bottle at home. Morphine is the only thing that stopped the pain. Man, I love that stuff.

Thankfully, with Humira I don't get any pain. Talk to your doc about pain meds and trying something else to get you under control. Pain like that can wear your body down so quickly.

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 5/2/2008 6:50 PM (GMT -6)   
Yeah... Pain is exhausting....

I used to just try to deal with it (because I never liked the thought of taking pain medicine... My family has a history of drug abuse... and I was afraid I'd end up getting addicted)... but now, I realize that it would do me more harm than good to just let my pain eat away at me all the time... And I also have a lot more confidence in myself... I know I won't get addicted to the medicine because I only take it when I am in pain... And that's what it's suppose to be for... To take when you're in pain...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Regular Member

Date Joined Mar 2008
Total Posts : 134
   Posted 5/2/2008 7:18 PM (GMT -6)   


I don't know how much you know about drugs and stuff,but, it is important to differentiate between becoming dependent on a drug versus abusing the drug.  If you need a medication for pain, and you need to use it regularly, your body will need more after a while to provide the same relief.  This is normal, and is just your liver becoming more efficient at processing the drug.  At this point you are dependent, and physically addicted.  You will have physical withdrawal, too, if you stop abruptly.  But you are not abusing the medication.!!!  A drug abuser uses the mental effects of the pain medicine--the "high".  The abuser becomes physically and emotionally dependent on the drug , and will then "crave" the "high". 

  When a pain patient's pain is better, they will taper down from the medication and forget about it.  A drug abuser  keeps looking for the "high".  There is a big big difference, and it is sad to see how many doctors don't really appreciate this.
I do understand how you might be worried, since you have seen drug abuse close up, in your family, and if you are worried about abusing it yourself, maybe.  But that is so not a reason to suffer in pain.  Cross each bridge when you come to it. 
please hang in there!!

Regular Member

Date Joined May 2006
Total Posts : 229
   Posted 5/2/2008 10:17 PM (GMT -6)   
Hi my crohns is in the terminal ileum and I get really bad pains as well. I also have chronic appendicitis. I have percocet for pain but I usually try to get rid of the pain on my own first. I find a heating pad usually helps I have discovered a new way to sleep when I am in pain,it looks really weird but it helps, I take 3 pillows then I lie on all fours with my butt in the air, I put on pillow under my knees, 1 under my stomach with the heating pad on it and one under my head. This position also helps get rid of gas

Veteran Member

Date Joined Feb 2007
Total Posts : 734
   Posted 5/2/2008 11:04 PM (GMT -6)   
Wow, it sounds like a lot of us suffer with pain.  I didn't realize how much, sometimes you think your the only one.  I don't think it's something the doctors address as much as they could.  I know I told my doc for years that I hurt terribly, then finally my hubby had it and called and told him to call in pain meds.  Shouldn't it be one of the first scrips we get if we are truly hurting?  I use it rarely, but when I need it, it's a godsend.

Regular Member

Date Joined Apr 2008
Total Posts : 21
   Posted 5/3/2008 1:24 PM (GMT -6)   
We all know what it is like. It really does feel like your stomach may explode.  I have had crohn's of the ileum for 15 years. Recently I had surgery to remove it.  Before that I was strictured to the point where the wrong food or a little inflammation meant a day or night of agony. I was never big on pain meds as they have a tendency to slow the GI tract down and in general you want to pass whatever it is that is irritating you.  While it sounds funny, water and applejuice were fantastic.  I would drink as much as I could which had a laxative effect and allowed me to pass whatever was irritating my bowel.  The pain would slowly ease up and get more tolerable.  After a day, it would be better and I could slowly re-introduce food. I know it sounds odd but it has worked on many occasions.  If you can tolerate liquids, you might try it.

Regular Member

Date Joined Oct 2007
Total Posts : 241
   Posted 5/3/2008 7:04 PM (GMT -6)   
my crohn's is in the proximal ileum and jejunum. it feels like i am on fire. i use percocet for the pain, but when it is in full swing nothing helps. i finally fall asleep and wake up in the am more comfortable. this is a hellish disease

Regular Member

Date Joined Nov 2003
Total Posts : 28
   Posted 5/4/2008 7:24 PM (GMT -6)   
Mine is in the small intestin. Before i knew I had crohn's I had the pain you describe. Basically they discovered I had crohn and the medicine helped. Call your doctor they might switch your medicine. Good luck.

Natalie :)

Veteran Member

Date Joined Apr 2006
Total Posts : 686
   Posted 5/4/2008 9:03 PM (GMT -6)   
Mine is located in my jejunum and proximal ileum. I don't really get much pain.

Remicade and 6MP

potty pooper
Regular Member

Date Joined Dec 2006
Total Posts : 375
   Posted 5/4/2008 10:57 PM (GMT -6)   
I just had surgery to remove a stricture in the terminal ileum. Still having a great deal of pain and depending on percocet which seems to help. My surgeon was reluctant to send me home with such pain because he was concerned about my becoming dependent on the drugs. I told him that "when the pain is gone, the meds are gone." I need them for the pain and have always taken so little pain med in the past, even though there were many times when I could have used them. Don't even care for the "high" feeling, just need the pain relief.
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