12-27-2012, 11:35 AM   #1
kad
 
kad's Avatar
 
Join Date: Dec 2012
My Story

My story, I first was diagnosis-ed couple of weeks ago with Crohn's. I It started years ago, but last year I got H-pylori and then a scoping because of all the issues with constipation and diarrhea. The H-pylori was cleared with two more test to make sure. I was placed on probiontic's and nothing got any better. The pain was the final straw. I went to get another opinion from another gastro doctor. This time it was called Crohn's. I am taking 4000mg of Pentasa. It has helped with the bloating, for without it, I would bloat like I was 7 months pregnant. The pain has not been relieved with the med's. I do exercises for my back and hips, which helps for a very short while. I can not sleep through the night because of the pain. The pills also, have stopped the diarrhea, and gas which was just awful, and embarrassing. What to do about the pain? It is almost unbearable to sit and write this story. Watching the foods I eat, and the amount. I did gain, 25 pounds this year. Still in a size 10, but that a lot of weight to gain, without ever changing my diet. Any advise would be appreciated.

Last edited by kad; 12-27-2012 at 11:50 AM.
12-27-2012, 11:39 AM   #2
muppet
Senior Member
 
muppet's Avatar
 
Join Date: Aug 2011
Location: Plainville, Connecticut
Pentasa alone is unlikely to induce remission, and if you're newly diagnosed and flaring you probably need something a little stronger, like Prednisone, to get you back to baseline again. At that point, Pentasa may help you, but it's generally considered too weak for Crohn's. I use a very similar drug called Lialda which works well for me, but that's not the case for most Crohn's patients as I understand it.

Where are you located? I'm curious as to why your GI didn't put you on something stronger to get your flare under control.

Gaining weight on Crohn's is generally regarded as a Good Thing, unless it's due to steroids and excessive (like me, I'm overweight from steroid use, but not obese).

When you say you watch what you eat, what do you mean? What sort of dietary restrictions or rules do you follow?
__________________
http://www.sarah-story.com
12-27-2012, 11:42 AM   #3
Trysha
Forum Monitor
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
Hello kad
Welcome to the forum.
Sorry you are having such problems right now and hope for a better time ahead for you.
I find a heating pad or hot water bottle helpful to relieve the pain.
I don't know about the weight gain except if you are on steroids it does cause the gain and when steroids are stopped the gain usually is reduced .
You do need to discuss these issues with your GI specialist though.
It's good the diarrhea stopped.
Feel better soon
Hugs and best wishes
Trysha
12-27-2012, 11:50 AM   #4
kad
 
kad's Avatar
 
Join Date: Dec 2012
Thank you for responding already. I am from Grand Rapids, Mi... The first gastro didn't even want to tell me for some reason that I had Crohn's. I think he would me rather live my life without the worry of some disease hanging over my head. I gained weight, not from steroids, just my whole body stopped working like it normally did, regular I was. I have been diagnose-ed with Lupus years ago, which I have been in remission. Steroids will be the last thing I go back on. I did not tell him that, but, I am a pilot and wish to keep flying. The pain is probably my major complaint. What do you do?
12-27-2012, 11:58 AM   #5
muppet
Senior Member
 
muppet's Avatar
 
Join Date: Aug 2011
Location: Plainville, Connecticut
If you're having pain that isn't improving on Pentasa, then it's very likely that your disease is not under good control. While it's perfectly understandable that you don't like steroids, if you fail to get your flare under control (which is what's causing your pain), then you are likely having active scarring in your bowel that could lead to strictures, fistula, and potentially perforation and toxicity. While many people seemingly get away with letting mild or moderate inflammation go for awhile (though it's always a bad idea), it sounds like your pain is bad enough to significantly impact your lifestyle and comfort and it's a good bet that moderate to severe inflammation is present. You should probably get a colonoscopy at least to see what the extent of your disease is.

Any doctor who would hide your health status from you is a bad doctor who should not be in practice.

If you treat the pain, ie, with pain killers, hot water bottles, etc, then you are most likely only masking symptoms of inflammation that should be addressed. It doesn't pay to ignore it. I'd talk to your GI about it and if he/she is not responsive about adjusting your regimen to get your flare under control, find a new doctor ASAP, do not kid around, as you'll pay for it in the long run.

Please be careful.

In the short term you can use hot water bottles, heating pads, meditation, etc. Medicinal solutions for pain are generally a bad idea with Crohn's, especially the heavier pain drugs. NSAIDS like Ibuprofen will intensify your bleeding and inflammation. Narcotics will impact your motility and may exacerbate your inflammation, as well as having the obvious downsides of being physically and psychologically addictive, possibly intensifying Crohn's-related fatigue and depression and compounding your stress. Narcotics are for people with very severe cases that simply cannot get relief any other way, and even in many of those cases patients try to do without or find alternative solutions.
12-27-2012, 12:07 PM   #6
muppet
Senior Member
 
muppet's Avatar
 
Join Date: Aug 2011
Location: Plainville, Connecticut
I know that Lialda is used to induce remission in Ulcerative Colitis, and I've had mixed results with it myself, but you're likely already too inflamed for it to be enough. You might consider talking to your doctor about enteral nutrition (a 24/7 liquid diet for some period, like 8-12 weeks) to induce remission, but you'd need to be on a maintenance med concurrent with that diet in order to retain the remission once you went back to solid food. Retaining remission after a course of EN is sometimes difficult.
12-27-2012, 12:25 PM   #7
kad
 
kad's Avatar
 
Join Date: Dec 2012
I am not taking pain med's unless it drives me to the ground. I only take pain med's from the doctor. My diet is usually very small amounts of what I have always ate. Stopped breads, milk products and veg's that leave me bloated, also meat has to be cut up in tiny portions. I did change gastro doctors after the first one didn't do enough to make changes in how I felt. My GP suggested a new gastro also. I should call and tell him the pain isn't getting any better. I also, am still very constipated, any bowel movement is less than a tsp. and pencil like, could be black and light, but atleast soft. Want to take care of this right, just feel like I am over worrying now that I hear most people are in pain. I have had scopings and they found several things wrong, that convinced the gastro that I had crohn's..
12-27-2012, 12:32 PM   #8
muppet
Senior Member
 
muppet's Avatar
 
Join Date: Aug 2011
Location: Plainville, Connecticut
Well, most people are in pain during a flare but only in very severe cases do people need prescription pain management routinely. You should not be in pain regularly. Your inflammation, and therefore your pain, should be controlled by maintenance medications, with stronger meds like steroids given to get you into remission so that the maintenance drugs can work.

If you are having trouble passing stool then it's possible you have impaction, a stricture, an obstruction, or intestinal spasms. All of these are conditions that a GI should know about and be treating you for. Very thin, pencil like stools can indicate severe inflammation in your rectum, which is what I suffer with whenever I'm flaring. This can lead to abscesses and fistula. I have a permanent one that I will have forever because of ignoring symptoms too long in my twenties.

You definitely need to see a competent gastroenterologist and tell him/her about all of these symptoms so that you can get started on a plan to get into remission and then stay there.
12-27-2012, 01:06 PM   #9
Mary:)
Senior Member
 
Mary:)'s Avatar
 
Join Date: Mar 2012
Location: Chicago, Illinois

My Support Groups:
Thank you for responding already. I am from Grand Rapids, Mi... The first gastro didn't even want to tell me for some reason that I had Crohn's. I think he would me rather live my life without the worry of some disease hanging over my head. I gained weight, not from steroids, just my whole body stopped working like it normally did, regular I was. I have been diagnose-ed with Lupus years ago, which I have been in remission. Steroids will be the last thing I go back on. I did not tell him that, but, I am a pilot and wish to keep flying. The pain is probably my major complaint. What do you do?
I will never go on steroids again also!! When I was in a major flare 2 years ago, which included a fistula, I told my GI I hated steroids so she put me on Humira right away and I have been fine ever since.
__________________
DX Crohns-2009

Fistula-2010


Humira-Every 2 weeks 40mg

Prednisone drives me nuts!!!!
12-27-2012, 01:18 PM   #10
kad
 
kad's Avatar
 
Join Date: Dec 2012
Mary Prednisone drives me nuts and into such a depression. Good to know there are other things to get you on track. Made me worse also!!
Reply

Thread Tools


All times are GMT -5. The time now is 08:02 AM.
Copyright 2006-2017 Crohnsforum.com