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mlatida
Regular Member


Date Joined Aug 2010
Total Posts : 129
   Posted 8/13/2010 11:48 PM (GMT -7)   
I was diagnosed with Crohn's disease 2 years ago, and I suffer from constant underlying pain and periodic moderate to severe pain issues. How do you cope with having to deal with pain for the rest of your life? The pain also influences my relationship with my 3-year serious boyfriend, especially our sex life. How can I keep from feeling guilty and down on myself? Any suggestions to alleviate the pain with sex? Any suggestions how to keep a positive attitude?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 8/14/2010 1:21 AM (GMT -7)   
Hi Mlatida and welcome to the chronic pain forum. I am assuming that you have visited the crohns forum here at Healing Well. That is a really great group over there, so any questions about cd I feel sure they will help. As far as pain goes from crohns I can commiserate with you as I have the disease myself. I was dx'd in 2002 after  an emergency small bowel resection for a complete blockage and abscess.
 
I am not real sure which type of pain you are suffering with as a result of your crohns. Are you speaking of abdominal pain or by chance do you suffer with crohns arthritis which hits the joints? I started having the terrible joint pain about 3 months after my surgery and it escalated and got so many other old problems triggered, that there for a while I thought I was losing my mind. It was like a domino effect causing so many problems.
 
My gastro like most does not offer pain medication to his patients and he referred me to a PM dr to address the pain issues. For the stomach cramping and the pain associated with that I take Bentyl which really helps me out in that department. I am also on Humira which helps with the joint pain, Entocort, Lialda and Imuran for crohns. What medication does your dr have you on? If your PCP is not willing to help you with your pain issues then you may want to consider asking either the gastro or PCP to refer you to a PM dr. One thing I do want to run by you is I know of a couple of people that are successful in controlling their pain with accupuncture. I am not sure if this is something your health insurance would pay for or if you would even be interested. But, I did want to put that out there for you. You speak of painful sex, have you been checked by your gyno to make sure there are no other underlying problems going on? If not, maybe a trip to your gyno is in order.
 
I sought care with a very good psychologist that was well versed in auto-immune diseases and chronic pain. I became very depressed which happens to a lot to people with chronic pain and I was in denial for quite a while in trying to deal with crohns.  My PCP put me on an antidepressant and it really helps smooth out the rough edges. If you feel you are depressed, do not hesitate talking to your PCP about this. It is not a sign of weakness either, we are very strong people to live like we do. She was so helpful to me in learning how to deal with so many issues from the medical side of things, grieving over the loss of my job that I enjoyed so much, feeling guilty because I did not think I was contributing as I had done before, guilt really chewed on me, anything associated with feeling like your life you knew is gone.  I became disabled due to crohns so my entire world was suddenly turned upside down. Overnight it seemed like my life had been snatched away from me and I had no idea how to accept any of it, let alone accept it. I sure did not understand any of it. With her help I was able to turn things around slowly. I think you probably know by now the life of being a chronnie is lived one day at a time.
 
I really do not feel like I have answered any of your questions, but I am not sure what type of pain issues you are dealing with so I just wanted to give you an idea of what happened with me. I do hope that you will keep posting and let us know how you are doing. Take care and let us hear from you. Susie

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/14/2010 8:01 AM (GMT -7)   

 

   Dear Latida,

     Good morning. My name is Dani and it is very nice to meet you. As you can see, we have a great group of members here. All very loving, compassionate, caring people who also suffer from chronic pain.

     I am terribly sorry you are having such a hard time coping with the fact that you will be in pain the rest of your life. I too, had a VERY hard time uderstanding that as well. I sought out the assistance of a pain psychologist. They specialize in the treatment of patients with chronic pain. They are trained with behavioural therapy, biofeedback... help to "re-build" you. Help you to become a new person who has chronic pain as a part of your life, but not what defines you. Here is a good article..

~~> http://www.4therapy.com/consumer/conditions/article/7282/489/I+Have+Chronic+Pain,+Why+Do+I+Need+a+Pain+Psychologist%3F

    If you are also struggling with depression, then talk with your doctor about it. Many times chronic pain patients struggle with depression as well. Your doctor will know the best places to go to treat that aspect that can sometimes accompany chronic pain.

     I know that neither of these options provide a "quick fix", but just as it is a long and hard road to effective diagnosis and treatment of your painful conditions... so is the road to mind and body wellness.

     It was very nice to meet you. Please, stay strong and hang in there.

*hugg*
  dani

   


 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator

mlatida
Regular Member


Date Joined Aug 2010
Total Posts : 129
   Posted 8/14/2010 9:14 AM (GMT -7)   
Thanks for the support. That's what I need most. As far as the specifics about the pain, the muscle pain, joint pain, and headaches only started after I started the steroids. First I was 9mg Entocort, and now I'm on 30mg prednisone. The intestinal pain is constant burning with intermittent sharp, stabbing pain. I have a script for tramadol to deal with the pain, and a script for xanax for the anxiety, although it doesn't help much with the mood swings. For Crohn's maintenance, I've been on methotrexate. My doctor gave me some information about biologicals because she's thinking about switching me to those type of medications. If I'm given a choice between Humira, Remicade, and I forgot the name but there's one more, which would people recommend?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 8/14/2010 10:02 AM (GMT -7)   
If it were my choice I would say Humira. I was on Remicade  for three and a half years. I went every 4 weeks for the infusions. I had horrible veins to begin with and had to have a Port A Cath put in chest which made my life a lot easier. Remicade helped me initially and then after a while it stopped being so effective. At the loading doses they said we would do the infusions every 8 weeks but I never could go 8 weeks in between the infusions. By week 5 I was sick as a dog, so we did them every 4 weeks. It really is a drug that should be tailored to your needs. They did not realize back then either that Remicade does not stay in your system as long as they thought it did. Not everyone can take Remicade either, you run the risk of having reactions from mild to severe. I had a bad reaction on my 3rd infusion and had to be given pre-meds from then on. You can also build up antibodies to the drug which I did and I also have drug induced Lupus because of Remicade. After my infusion was finished and I spent nearly a full day at the hospital for each one, I had to come home and go to bed and stayed there for the next three days because I always felt like I had the flu. By day 4 I was better and then it repeated itself in 4 weeks. Don't get me wrong, I am not knocking Remicade because it did help me but I went thru alot to feel better for a short time. I cannot tolerate steroids I go into congestive heart failure on them so Remicade was my saving grace at the time. I have seen and heard of a lot of different types of reactions to Remicade and they have been pretty nasty but I have not heard anything like that with Humira. It is the mouse protein in the Remicade that makes everyone so sick.
 
After the Lupus dx my gi switched me over to Humira and let me tell you there is no comparison. I feel so much better on Humira. I would much rather give myself a shot in the leg every 2 weeks than go hook up to an IV for several hours, then be sick for 3 days. My gi was a big Remicade fan because it helped so many of us, but once he started seeing our response to Humira he switched us all over. There are no pre-meds to mess with either. I don't get sick after my shot none of that. You can get Humira in Pens or a regular syringe, I prefer the Pens, I am terrified of needles, lol. I am on medication for Lupus and as long as I am on a TNF blocker the Lupus will remain. Of course convenience is another reason I love the Humira.
 
I have been on steroids long term before I started having the CHF started and I do know what you mean about the mood swings and the headaches. I had a horrible time sleeping when on them. Because of my long term use I now have osteoporosis from that evil drug. Prednisone is a real love hate relationshipo drug. We love how it can make us feel better but hate how it makes us feel, being a crohnnie you understand what I am saying about it, lol.
 
As with all medication there are possible side effects. When you read about the side effects from the biologics it scares you to death. But, please keep in mind none of this may happen to you either. If one person reports a problem then by law they have to list that side effect. That is on any drug. The 3 1/2 years I was on Remicade my husband was very upset with me, he was so afraid of me either dying or getting cancer. Its like I told him, yes, and I may walk out the door in hour and get ran over by a car. I had to have some quality life and Remicade gave me that and there was no other drug available to try me on. Humira has pretty much the same possible side effects but again, I need the quality life. The one thing I do is in the winter months is avoid crowds because of the immune system being lowered. So, far knock on wood this has worked for me. If anything the TNF's has made me take better care of myself to keep from getting sick with something else.
 
If you have any questions on these drugs let me know. By the way, both companies offer help with your co-pays. I pay $5 for my Humira and this stuff costs thousands of dollars. Take care. Susie
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