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Regular Member

Date Joined Oct 2007
Total Posts : 106
   Posted 10/8/2007 6:31 PM (GMT -6)   
Hi everyone. I am 21 years old and I got diagnosed with Crohn's disease in March. I have been in horrible pain since then, every morning I wake up and most of the time can't even get out of the bed. I have two small boys 22mnths and 8mnths and living with this makes it very hard for me to take care of them. When I was in the hospital for the long week in March they ran a lot of tests and kept me comfortable with Morphine
through an IV. Then I was released and they sent me home with no prescription. It was four months of being in and out of the ER because I would hurt so bad I couldn't stand it anymore, so I had to go. They would give me a pain shot and sometimes let me go home, but keep me sometimes too. Then when I got home I felt pain again. So finally I went to my GI and told them they had to give me something or I was switching doctors. He did but they only give me 40 pills a month. I don't know what to because my stomach still hurts every day and I usually run out of medicine before a months time is up. I don't understand this my doctor says its because I am young and they are addictive, but I am a good girl. I do not use drugs, I go to church and I never have taken anything until I got sick. Any advice???

Regular Member

Date Joined Mar 2006
Total Posts : 494
   Posted 10/8/2007 6:38 PM (GMT -6)   
I believe that is all they would give most people, i think it's some kind of law or something. I get them too and I just don't use them every day so they start adding up.  Maybe you could go to a pain specialist and they could help you more than the gastro does.  I have had my primary prescribe meds as well in addition to my gastro and they can see every med I take in the computer, I guess it's not always a big deal.  I say "oh that med is not working well" and they give me a new prescription for something else.  If you can't find relief, just try and get a new doctor, (although I know it can be very difficult).  I hope you feel better.
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.

Regular Member

Date Joined Oct 2007
Total Posts : 106
   Posted 10/8/2007 6:44 PM (GMT -6)   
Thank you for the info. I'm new to this so I don't really know the process, but sometimes I just feel helpless. And I wonder too what they make the medicine for. I feel like the doctor that I've seen really don't know how bad I feel. I live in Kentucky so there's a lot of people in my community that are on drugs. I guess people like that have just ruined it for those who are sick and need some relief. That's sad to say but it's the truth!

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 10/8/2007 8:22 PM (GMT -6)   

Most ( not ALL!) GI's are not trained in pain control, nor even understand the need. You are better getting a referal to a pain clinic or asking your general care doc for pain meds. IME.


Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 10/8/2007 8:23 PM (GMT -6)   
Kandice, I would ask your primary care doc for some pain meds. GI's are known for not wanting to give pain meds, but I'm a firm
believer that in this day and age, no-one should have to tolerate pain, and it seems to me, that if your pain is bad enough to send
you to the ER, and sometimes kept in for pain control, you should get more help for your quality of life at home. Especially having
2 small children to care for. I wish you lots of luck.

Too many years with CD
Two bowel resections, several obstructions.

Laughter is the brush that sweeps the cobwebs from our hearts

Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 10/9/2007 1:22 AM (GMT -6)   
I can't get over the fact that they kept you on morphine in the hospital, then sent you home bone dry. You poor girl . I know what it is like to have CD and have small children to care for. My girls were only 14 months apart and I was always flaring , and dealing with massive migraines. I was in and out of the ER for Demerol and Gravol injections 2 -4 times a week. Luckily I had family support. My mom and sister were there for me every step of the way.
What kind of support do you get Kandice. ? is there anyone around to take the kids for a while so you can rest.?
I agree that in this day and age, there is no reason for people to live in pain all the time. Your GI specializes in gastrointestinal issues, he needs to refer you to a pain specialist. Meantime , maybe your family doctor can prescribe something . Be firm. Don't water down your symptoms. Exaggerate if you have too. If you are going to the ER all the time for pain issues, you shouldn't have to exaggerate should be obvious to anyone with a so called medical degree that you are suffering.
Come to us often here....complain all you want....we've all been there...You WILL get through it...and there WILL be better days ahead.
Love and prayers to you
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 10/9/2007 8:44 AM (GMT -6)   
What you need to do is address the reasons for the pain. Obviously your disease is nowhere near controlled. What medications are you on? What is the doctors plan? Are you having obstructions? Have they tried Prednisone? Have you been referred to a surgeon?

Pain is a symptom of the disease, you need to fight the disease to get rid of the pain. Sometimes you can do it with medications, sometimes surgery is necessary. A frank discussion with your doctor is in order. Let him know that you can't live this way, that he needs to be more aggressive in treating your disease and give you enough pain meds to tide you over until you're feeling better, or you will look for a doctor who will.
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP, hoping for a long remission from this last surgery. 

Regular Member

Date Joined Jun 2007
Total Posts : 45
   Posted 10/9/2007 10:58 AM (GMT -6)   

Hi Kandice,

There is an alternative pain relief treatment that has crediable research to back it up.  If you would like to know more please email me at address in my profile at the left.



15. Do not post offline personal contact information (ie. your home address, phone numbers etc.) and do not ask for personal information from others. 

-I altered your message so your email was not exposed to non-members

Post Edited By Moderator (MMMNAVY) : 10/9/2007 8:51:56 PM (GMT-6)

Regular Member

Date Joined Jun 2006
Total Posts : 267
   Posted 10/9/2007 11:00 AM (GMT -6)   
sad  Kandice,
I am so sorry to hear that you are in so much pain all of the time, and all of those trips to the ER, how horrible. Plus you have 2 toddlers demanding your attention. My hats off to you for being able to keep up with all of that. I find it infuriating that the ER would give you pain meds and then send you on your way with nothing, that's horrible, do they think that the pain is gone for good?? I'm sorry but I have a very bad taste in my mouth for ER's and ER docs, last experience at ER was horrible and vowed I will not go back again unless I'm on death's door.
You need to have a very candid talk with your doc about the pain you are in, tell him how it's affecting your quality of life and your children's quality of life. If he still refuses to increase your dosage then ask for a referral to a pain specialist. In this day and age there is no need for you to be living in such pain every day when it obviously is negatively affecting your family also.
Hang in there girl, we're here for you!
Marci C.
38 years old, dx with Crohn's disease March 2007, currently on Humira, Entocort and hydrocodone (for pain), and Effexor

Veteran Member

Date Joined Jan 2003
Total Posts : 1129
   Posted 10/9/2007 11:05 AM (GMT -6)   
Right JudyK89..... I have the same questions. What other meds are you on for treatment? What is your GI doing to find out where and why your having so much pain and what are they doing about is?

Regular Member

Date Joined Oct 2007
Total Posts : 106
   Posted 10/9/2007 6:35 PM (GMT -6)   
Hi everyone and thank you so much for the feedback. I just recent;y got diagnosed and I'm still trying to cope with my issues. My mom is an alcoholic so I don't have that much family support, thats why I got on this site. However my mother in law helps with my babies sometimes, but she has R.A. so its hard for her too. I've been through a lot in the past two years and I'm tired of trying to fight this alone. I am currently on Remicade, was on prendisone but it made me crazy so I had to stop taking it. I go the 17th for galbladder surgery and that might be what is causing some of my pain. My GI thinks I should try this Remicade for a couple more treatments then if I don't improve they want to do surgery. I have a terrific GI, but I havent seen him in 3 months for some reason, they always schedule me with the PA's. No offense to anyone, but I don't think that they know nearly as much, last time she told me I was having irritable bowel, come to find out my reg. MD said it was my galbladder. Im so tired of hearing 10 different things from diff. doctors. Anyone else have this problem? Last time I went to the ER I cried before I left because I told them I was going to get home and feel like I was dying once again. I feel like I can't get any relief. They have wrote me 40 Lortab 7.5's in one month before and that's the most I've been able to get. But the way I'm feeling right now, I need more than that. Most of the time I need one before I can even get out of the bed. Mornings are the worst part of the day for me sometimes I dont even sleep at night because I don't want to wake up. Does anyone know anything for me to do so I can reduce the pain myself? But I don't really guess its anything that I'm doing, I can't help this... I know the disease is painful anyway, but somethings got to give. I cant live like this every day. My sons are 8 mnths and 22mnths (13 months between them) they really need me right now. I hate having to see them watch me so confused, and I wonder sometimes if it can get any worse.

Veteran Member

Date Joined Dec 2005
Total Posts : 637
   Posted 10/9/2007 6:56 PM (GMT -6)   
A pain specialist is key.

The DEA, drug enforcement agency makes it VERY hard on doctor's who prescribe pain meds.
They look over their records, they question them, they hassle them, and most doctors just don't want that. Then there are the possible addiction issues, and dependence is a given.

Some doctors don't mind dealing with the dea, or helping with addiction problems.
I am not at all saying you are a bad person, or a good person, it makes no difference.
Remember that we are talking about the MOST powerful medications on the planet here.

Pain med. doctors will take this challenge on.
They have you sign an opiod contract, you will not get narcotics from any other doctor.
Even if you have a colon test, you need to bring a copy of what was given to you to the pain med doctor so they can put it in your file.

They give urine tests, to make certain you are using their meds. Another reason to make certain you stay on top of any other narcotics given to you.

It's not an easy road, but I think it's well worth it.

Also, A pain med doctor can help you if you have any type of addiction issues.
Your Primary doc. or even your g.i. doc is inclined at that point to stop treating you all together.

Take Care

P.S. There is a pain forum right here on healingwell, which discusses these things in further detail, check right above the Crohns disease link for chronic pain. :-)
CD dx @ 13 (1987)
Prednisone 15mg every other day
Imuran 150mg day
Pain Meds

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 10/9/2007 8:18 PM (GMT -6)   
Yes, find your nearest Pain Clinic & get an appointment YESTERDAY. Don't do what I did when I was first DX'd. I avoided pain meds, other than Bentyl for cramps & suffered for years- NEEDLESSLY.
Just make sure you get into a Bona Fide Clinic, unfortunately there are some Doctor Feel Goods out there, doing just what the DEA thinks all docs do.


Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 10/9/2007 8:50 PM (GMT -6)   
I agree find someone who will get you the relief you need. Be prepared to go to the doc every month and do a drug test.

Forum Moderator 
I will find a way, or make one.-Philip Sidney
Make sure your suffering has meaning...

Veteran Member

Date Joined Mar 2005
Total Posts : 4305
   Posted 10/9/2007 9:29 PM (GMT -6)   
Welcome.I am so sorry that you are having A hard time and believe me when I say we know what you are going through.matthew is right alot of GI and onther doc's are not willing to script pain meds because you can get addictive.You must understand that there are a lot of people that abuse them there for making it harder for us.My old GI had no problem scripting my meds but when I moved out of state(moved back to my home town)I started using my my parents PCP and he told me untill I could get in a pain doctor,but he all told me that he would not script me any other pain med except hydrocodone 10-60 I was glade to at least have somethingSo I agree you sure need to get a refferl because there is no reason that you should have to suffer like you are. hope you get to feeling better soon.

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 10/9/2007 10:26 PM (GMT -6)   
You need to get on the phone and tell your GI doctors receptionist that you can't wait 3 months, you need to see him/her as soon as possible, unless he's willing to help you manage your pain until the Remicade kicks in.  If they can't get you in, ask for a referral to a GI that can.

In the interim, you may try diet to help control the symptoms. Did your doctor explain about low fiber, and possibly liquids? Sometimes it helps to eat soft foods, nothing that will irritate your insides, and maybe even try Ensure or Boost for a few days to see if it helps.

I've never had a GI that didn't help me with pain meds. They may not give me a lot at one time, but they always refill if I need it. Have you tried asking for a refill?

Try asking to have the doctor call you, maybe you can explain about how much pain you're in, and you don't know if you can wait until your appointment time. Just the fact that you've been in the ER so many times should make him understand how much pain you're in, but maybe he's just waiting for you to ask for the meds.

I hope you get relief soon, I also had 2 small children when I was first diagnosed, hard times.

49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP, hoping for a long remission from this last surgery. 

Regular Member

Date Joined Sep 2007
Total Posts : 317
   Posted 10/9/2007 10:39 PM (GMT -6)   

I agree that you might want to try soft foods for awhile. That really helps me. I wanted to also let you know that gall bladder disease can be quite painful. When I had gallstones leading up to surgery (years ago) I had the worst pain I had ever experienced. We all (including the ER docs) were sure it was a heart attack -- even though it wasn't exactly in the right place for one. I was PREGNANT and literally BEGGING for morphine -- which is completely unlike me. So, maybe your upcoming surgery will help.

Since you have the surgery scheduled, you can also ask to see a pain specialist while in the hospital. Maybe you could start a relationship with someone that way.

Don't downplay your symptoms -- and good luck!
44 years old, newly diagnosed after an 8-day hospitalization in September 2007 but symptoms for several years before that.
Taking Pentasa, Prednisone (tapering), Cipro, Prilosec, probiotics, calcium and a multi-vitamin -- also Levoxyl for hypothyroid (Dx 2004)
Gall bladder surgery in 1997.
Single working mom to three wonderful kids, ages 9 to 15.

So appreciative to have this forum -- it's all new to me!

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