Third Flare this Year! Could use Advice...

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Binya
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 3/22/2010 8:40 AM (GMT -7)   
Hello Everyone,
 
I must say this site has been such a blessing.  I have learned that I am not alone, that I don't have to give up, and that even though things are bad I can get through.  I am having my third flare this year.  Doctors are wavering on surgery.  They say that I have tissue damage that needs to be removed but they are not sure if they want to do it or not because I have only been on one course of medication (Imuran, Prednisone).  The problem is I cannot seem to get well enough to move on to another course of treatment.  I am also a diabetic (with really good control), overweight, and with the Fibromyalgia am having a heck of a time healing.  It seems like I get about 85% better and then I am back in the hospital for 5 or 6 days.  The pain is appalling.  I feel like if someone poked me with a pin I would pop!  I am surviving on a liquid diet right now.  Going to the bathroom is a nightmare.  I would never wish this disease on anyone!!! 
 
Now that I have boo hooed, I am looking for some practical advice on what next steps to take.  I am finding it impossible to keep a job (I have been working since I was a kid so it is weird to feel this way for me) because of the pain, the missed work, my age (40), and of course my condition.  My family and I will lose our home if I do not work.  I am employed at the moment but they are losing their patience with my disease and I see a letting go sometime soon.  They are asking me to write a manual on how to do my job.  I have to say, even though it sounds harsh now, that they have worked with me and around me for 5 years so it is not like they have not tried but I just am not reliable as my crohn's flares up within hours, so I could be okay in the morning and in the hospital at night.  So unpredictable.  I think that I finally have to stop working and apply for disability (in Michigan).  I know it takes a long time but I just wondered if anyone had gone through it and what they could tell me about the process.  Should I talk to my employers about this or just quietly start the process.  I hate to be deceitful but I have to protect my family as best as I can.  I just found out I am going to be a Grandma so it is very important to me!  tongue
 
My second question is about pain control.  I already take a lot of pain meds for this (6 Norco (10-325) and 6 Ultram (50mg) and 150 mg Nerotin (sp?) per day) but I still am hurting so bad I want to cry.  What is the next level of pain control besides going to the hospital and getting IV pain meds.  I don't like the way they make me feel but the pain relief is amazing!!  I actually feel halfway normal for about an hour and for those of you that hurt that is like a little slice of heaven.  What should I talk to my doc about?  It there something else besides narcotics that may work?  I do other things like meditation and deep breathing, relaxation techniques. 
 
Sorry for my long winded post.  I am just feeling a little at the end of my rope and cannot stand another secondcry .  Thanks for taking the time to read and reply.  Have a super day. 
Binya
Crohn's 12 years, Diagnosed 3 years 
   Fistula's - Surgery 2008
Diabetes Diagnosed 2000
   Complications from Prednisone (Neuropathy)
Fibromyalgia Diagnosed 2009
Carpal Tunnel Diagnosed 2009
 
 
 

 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/22/2010 9:32 AM (GMT -7)   
I'm so sorry that you're going through so much. It is such a difficult disease. We need nutrients to survive, but the process of eliminated what's eaten is enough to drive any one of us (or anyone else if they really understood) crazy! The days when I puke from pain during a bm. And, I know I'm not alone.

I don't really know what is better on the pain mgmt scale, though I do know that I am about where you are (with the Norco only, though) and my doc is suggesting a Fentanyl patch. I've been hesitant because I'm scared of stronger narcotics, but in talking to my therapist she seems to think it would be good mentally/emotionally. Has your doc mentioned the patch? From what I read about others it sounds like it's technically changed every 72 hrs but many people need it every 48 hrs. Maybe it would be helpful in that it's longer acting and you won't have the ups and downs with the pain breaking through (as much) as you do on oral pain meds? Just a thought.

Anyway, beyond that I just wanted to send a (((((hug))))) your way. Hang in there... You are not alone!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


Binya
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 3/22/2010 10:48 AM (GMT -7)   
SR5599 (VM)

Thank you so much for your thoughts and good wishes and ideas. I have not talked to my doc yet regarding the level of pain I feel. Sometimes I feel like I am banging my head on the wall when trying to discuss chronic, debilitating pain with someone (doc or no) that does not have to deal with it every day. I just think that if you are someone who does not have to deal with it you have difficulty understanding the level that we just LIVE with. Compassionate well meaning people who get hurt and take a little narcotic and feel better cannot really grasp what it is like to vomit, scream, and faint just because you passed gas or tried to have a bm. The pain in my entire belly from being extended for weeks is enough to pass out. I could not get through the day without my pain meds. The funny thing is if I had a choice I would not touch them with a 10 foot pole!!! LOL Thank you, Thank you, Thank you for making me feel like a human! Smiles and a hug back to you!!
Binya
Crohn's 12 years, Diagnosed 3 years 
   Fistula's - Surgery 2008
Diabetes Diagnosed 2000
   Complications from Prednisone (Neuropathy)
Fibromyalgia Diagnosed 2009
Carpal Tunnel Diagnosed 2009
 
 
 

 


Binya
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 3/22/2010 10:51 AM (GMT -7)   
Can anyone tell me which of my doctors I should talk to about my Crohns pain? My GI guy, Rhumetologist (thats who I get pain meds from now), or my primary? I know it seems dumb but I get afraid of addiction and just like to have it all in one place. Thanks again.
Binya
Crohn's 12 years, Diagnosed 3 years 
   Fistula's - Surgery 2008
Diabetes Diagnosed 2000
   Complications from Prednisone (Neuropathy)
Fibromyalgia Diagnosed 2009
Carpal Tunnel Diagnosed 2009
 
 
 

 


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 3/22/2010 1:42 PM (GMT -7)   
Binya, I feel so much for you ,almost the same story here. Fistula, out of control. Just took a nap and woke up again, having to change everything.Bed,sheets, comfortor, gown. I actually, do not have the energy to that. It has come to the point, my husband looks disgusted.I have an rx,for percocet,from an old family doc.They have worked quite well. My sx's are almost to many to list.Next step for me is "back to the colostomy bag for life."Addiction is very real,but for you, I see no other choice. Talk to the doctor you are most comfortable with. As far as addiction goes, I do fine with my medicine. My darnn husband took 3/4 of my script.So...............that, in my book is an addict!Keep us posted, everone here is great!!

Mary Lynn


Binya
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 3/22/2010 1:52 PM (GMT -7)   
Mary Lynn,

Sweetie, oh I feel for you. My husband has been very supportive so I do not have to deal with the same problems (not yet anyway) but my heart hurts for you!!!! You sound like you are in despair and hurting a lot. I do have to agree with you about addiction, if your husband sees you suffering and the pain you are enduring and still feels the need to take your meds away from you . . . wow that must be so stressful for you. My heartfelt prayers go to you! I just don't know what to say. I wish I could take away the hurts from us all. I do appreciate your honestly and advice. Sometimes it is nice to hear things from someone else's perspective to help get a handle on my own life. I hope you start to feel some relief soon yourself. I hate to think that the "bag" is the answer for you but it may end up giving you a quality of life you just don't have now. The same for me. If I thought it could improve things I just might put one in myself LOL Gotta have a lot of humor to deal with this horrible disease! I do sincerely thank you for your support and kind words. Keep hoping, keep living, and keep fighting! ((Hugs))
Binya
Crohn's 12 years, Diagnosed 3 years 
   Fistula's - Surgery 2008
Diabetes Diagnosed 2000
   Complications from Prednisone (Neuropathy)
Fibromyalgia Diagnosed 2009
Carpal Tunnel Diagnosed 2009
 
 
 

 


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 3/22/2010 2:28 PM (GMT -7)   
Thanks girl, I appreciate your thoughts. I am a recovering AA. Quit years ago. I knew he was a drinker, just never thought he would take my much needed medicine. I don't see him wanting and pred! lol if my friends knew this....it would be a bad day in out town. Keep in touch and find a kind old doc, who understand, and has treated us folks for years!!

Mary Lynn


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/22/2010 10:12 PM (GMT -7)   
 scoolrovin1959 Someone who has a disease that requires pain control by narcotics is not an addict but dependant. There's a huge difference between the two. Someone who abuses narcotics for the high is an addict. Here's a web site from the American Academy of Pain Medicine, the American Pain Society, and the American Society of Addiction Medicine that explains this much better than I can.

http://www.ampainsoc.org/advocacy/opioids2.htm  Please note that it's dated toda,y my clean date 7 years ago. Rob Happy Birthday to meeeeee!tongueturnyeah


Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/23/2010 6:25 AM (GMT -7)   
I agree with Grandpato2 100%. There is a big difference between addiction and dependency. When a Crohns patient is suffering and in pain, and start taking pain meds they may become dependent on the med. But they are NOT addicts. As he stated addicts take the meds to get high, I do NOT get high from my pain meds, I get pain relief thats all. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 3/23/2010 6:55 AM (GMT -7)   
Happy Birthday Rob!!(yesterday?) Not sure what ,not that it matters what you are clean from!! I guess in a nice way, I was saying that I am married to a man who is addicted to everything and then looks at me and says"yeah I took them,(my pain medication) they are just pills!"On the bright side my cherry tree's are blooming!!

Mary Lynn


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 3/23/2010 5:56 PM (GMT -7)   
Binya,

I'd talk to my PCP about pain meds. They tend to keep better track of meds and GIs tend to dislike prescribing pain meds.

I got over the concern about "addiction" quite a few years ago. I've been taking narcotics (morphine) for pain unrelated to Crohn's since 1986 and it really doesn't matter to me anymore that I'm dependent, I'll be taking them for the rest of my life so why care?

If your doc isn't understanding and readily willing to prescribe whatever you need then find one who will. I certainly understand the desperation we can feel when we have too much pain for too long. Please don't try to live pain free, that way lies serious health problems, but you can certainly reduce the pain to an easily tolerated level. I have been taking time release morphine for many years and I highly recommend a time release pain killer, weather pill or patch, to eliminate the ups and downs of the normal oral pain reliever.

I hope your feeling better soon and we're here whenever you need support.
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/23/2010 10:28 PM (GMT -7)   
When we were in chat I knew I wanted to talk to you about something now I see what it was lol. Thanks for the happy birthday again! Yes addicts steal pills even from those they love. Sorry to hear that's part of your life.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/24/2010 6:40 AM (GMT -7)   
Binya I did have one suggestion for you for your fibro pain at least. I recently after reading threads here about the benefits of Vitamin D3. Many crohnies are deficient as well as the general population. We are inside alot during the winter because of the weather etc, or we work in offices all day, or when we are outside we are using more sunscreen. Told you that because from us doing all that we are not absorbing the sun rays that would provide us with natural vitamin D. So I was tested and found to be low. I have since added approximately 3400 units of Vitamin D3 to my med mix, and I want you to know it helped my Fibro pain SOOO much. It did take about a month to help, but it has helped alot. I will look for my article about how Vitamin D3 helps chronic pain and post here for you. Also, please be careful with the Fentanyl patches they are about 100 times stronger than morpine and the withdrawals are H$ll to go thru. I know that from experience. Hugs!
 
Here is the link I told you about:
 


Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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