Abdominal Pain

[CELDamage]

I have severe Crohn's Disease with extreme abdominal pain. My Crohn's affects my esophogus, stomach, large and small intestines. It is so wide spread that surgery is not an option. I am currently seeing one of the fore most specialists in Chron's at the University of Washington Diagestive Disease Center.

Currently I take between 460mg and 800mg of Morphine a day. Without it the pain is so bad I can not breath.

Has anyone experienced this type of extreme pain and if so what are you doing to control it?

I need to find a solution other than Morphine or other narcotics. I was fired from my job of 15 years for being on Morphine, even though I had fully disclosed my use to my HR department and I have a current prescription. According to Washington State law, I am not employable, but I have been denied social security disability benefits. So, my only option is to get off the Morphine.

My doctors tell me that there is no way I should return to work and that there are no other options for me.

I have been to 4 seperate pain specialists. The last one found that if she temporarily blocked the main nerve centers in my abdomen the pain went away. (Surprise.) There is even a proceedure which can freeze and destroy the nerve centers, but my doctors will not allow me to have the preceedure done as it will prevent me from knowing if I have an intestinal rupture or blockage.

So, I am stuck. I have tried hypnosis, acupuncture, meditation and nothing works.

For several months I was on 1800 Micro Grams of Fentanoyl which worked great, but after a month I developed side effects such as extreme anxiety and panic attacks. So they took me off the fentanoyl.

The reason they have me on Morphine is that it is non-addictive as long as there is real pain. As long as there is actual pain signals the morphine will be obsorbed by the nerves experiencing pain. If there is no pain then the morphine will go directly to the brain causing a "High". I have never experienced a high and my pain is never completely gone, but is managable.

My doctor says that I am his #3 worst Crohn's patient on his dokit. He's great. He's just concerned that any change will eliminate choices down the line.

Tordal helps a lot, but does not eliminate more than 30% of the pain. Once however they did give me the maximum dose allowed and along with a smaller dose of morphine, approx 200 MG the pain went away all together. Unfortunately Tordal can not be taken for more than 2 days in a 30 day period.

I am just at a loss. The government says I need to work, my doctors say no way, my body says no way, but how else do I take care of my family.

 

[imisspopcorn]

Wow. I am so sad to hear your story. I can't imagine how hard and frustrating this must be for you. It sounds like you have some caring doctors working with you. I hope you can find some relief soon.

There are a lot of knowledgeable and funny people here on this forum. I am Glad you found us. Let us know how things go.

 

[D Bergy]

If you are not opposed to alternative treatments, I have a cheap and easy one to offer. I use it myself and others have also with good results, so I am not an exception. As a matter of fact here is an E-mail I just found from a while back concerning this treatment.

I wanted to check in with you reguarding the MMS. My husband and I have been taking it for two or three months now with really good results. He's using it for lyme and yeast and I'm taking it for crohn's/uc. We have both seen very positive results since starting it. Thanks so much for the info on it.
I just saw a post on healingwell today from someone that's been taking it for two weeks and I commented on my results on that board as well.
I also wanted to mention that our kinesiologist recommends taking a five day break after twelve days as not to develop allergies to the mms. When I restart, I can tell it's still working from my herx. We're currently up to about twenty drops per day total so I think we'll be cutting down after our next appointment in a few weeks. I'm assuming we're at optimal dose or close to it.
How have you and your wife been doing? It's weird that you have the stomache issues and she has the lyme and here it's me with the crohn's/uc stuff and my hubby with the lyme.

MMS is also known as Miracle Mineral Supplement. It is both an experimental and alternative treatment. When mixed properly it produced the chemical Chlorine Dioxide. Chlorine Dioxide has the unique property of killing acidic bacteria on contact. Acidic bacteria is almost always bacteria that is not beneficial to the body. It is also picked up into the bloodstream and used to kill bacteria in the body.

It is powerful and has to be used slowly. The sicker you are, the more reaction you will have to it.

Do some research on it and see if it is something you are willing to try. I still use it occasionally and it brought me out of a flare in four weeks, when nothing else I tried would.

Dan

 

[misscris]

:welcome: to the forum CELD. Sorry to hear you are going through so much with this disease. I hope they can find a way to get things under control for you. I don't have any suggestions, just wanted to say hi to a fellow Washingtonian.

 

[daisyjane]

I also have Crohn's, from bottom to top (throat bleeds, no mouth sores yet). Tramadol helps me a lot, but there are 4-5 instances (around one per week) that Tramadol does not help, and it scares me the amount of pills I have to take just to not be in agony. Tramadol helps the pain most of the time, but sometimes between that and hyoscyamine, I take more pills than I am comfortable taking.

 

[CELDamage]

I always have though of myself of being in control, but now I have to fight not to cry. I had a succesful career that took me years to build and then within 3 years my career, my house, my car, my savings, everything was gone.

Few people realize how quickly a serious illness can come along and destroy life as you know it.

My doctors say that I must not take any suppliments or homeopathic remoodies, because my iron, cooper, B-12, B-6, D and other vitamin and mineral levels in my blood are too high or too low. So all those options are off the table. What I need is any recommendations that may allow me to control the pain without drugs or with a drug that affects only the local area. I have tried some local lido-cain patches, but I have been found to be resistant to all of the -cain family of pain mediations. Apparently I have a condition which affects the way I metabolize certain medications. I even require special pain medication when I go to the dentist.

Please ! If anyone can give me any ideas on possible treatments, even something other than my current Crohn's treatment may help control the pain.

I just don't know what to do. I have never been fired in my life up until now. When I was fired last November, the day before Thanksgiving no less, I was left in utter shock. They told me that if I took them to court I would win, but they would make sure they kept me in court for as long as possible. So they gave me a small termination package and I left quietly. After all why make a fuss. In all honesty I was made a scape goat for a failed upgrade to the companies main frame, something I wasn't even responsible for. (a long story)

Tonight I have taken 300 MG of Morphine and the pain is now just becoming bearable.

 

[imisspopcorn]

I always have though of myself of being in control, but now I have to fight not to cry. I had a succesful career that took me years to build and then within 3 years my career, my house, my car, my savings, everything was gone.

Few people realize how quickly a serious illness can come along and destroy life as you know it.

My doctors say that I must not take any supplements or homeopathic remoodies, because my iron, cooper, B-12, B-6, D and other vitamin and mineral levels in my blood are too high or too low. So all those options are off the table. What I need is any recommendations that may allow me to control the pain without drugs or with a drug that affects only the local area. I have tried some local lido-cain patches, but I have been found to be resistant to all of the -cain family of pain mediations. Apparently I have a condition which affects the way I metabolize certain medications. I even require special pain medication when I go to the dentist.

Please ! If anyone can give me any ideas on possible treatments, even something other than my current Crohn's treatment may help control the pain.

I just don't know what to do. I have never been fired in my life up until now. When I was fired last November, the day before Thanksgiving no less, I was left in utter shock. They told me that if I took them to court I would win, but they would make sure they kept me in court for as long as possible. So they gave me a small termination package and I left quietly. After all why make a fuss. In all honesty I was made a scape goat for a failed upgrade to the companies main frame, something I wasn't even responsible for. (a long story)

Tonight I have taken 300 MG of Morphine and the pain is now just becoming bearable.

Please be careful with such high doses. How often does your doctor adjust your meds. Have they talked about an indwelling spinal catheter similar to an epidural only without being so numb you can still walk?

 

[CELDamage]

What do I mean by extreme pain. A low dull pain that starts in the lower right quad, where your appendix is. That dull pain starts to rapidly radiate from there around the right side all the way to the left kidney. Then the dull pain builds to a sharp percing and stabbing pain which radiates out of the right upper abdomen, where the illeum is. Then cramps. It feels like when you get a cramp in yourcalf muscle only 25 times worse. It builds until you can not move, than you start to bend slowly to the right, curling in to a ball, your rectum feels like it's going to pop out, your groin contracts and then every muscle in your body contracts. Then you get an overwhelming feeling of diarreha and nausia. Then you vomit and if your lucky you don't loose control of your bodily functions.

Once my wife had to speed to get me to the nearest rest stop. A highway patrol officer pulled us over. When Itried to get out of the car he yelled FREEZE. I understood why, but I didn't want to deficate myself in the car. When I tried to explain he told me to FREEZE again. At that point the pain hit at it's fullest, I collapsed, vomited and deficated myself. He called an ambulance and they arrested me for being under the influence of illegal drugs. At the hospital they took blod samples and my doctor came to my rescue explaining my medical condition. The tests came back posative for narcotics, my doctor explained I had a legal prescription for Morphine and my attorney explained since I was not driving I had been falsely arrested. The state dropped the charges as long as I agreed not to sue. My most embarrassing moment in my life. It haunts me to this day. I spent 6 days in the hospital. They had to repair 3 small ruptures in my small intestine.

Another time I collapsed at work and again lost control of my body functions. I almost could not return to work the next day. Luckily it was a Saturday and no-one saw me. I just thought "what if it happens when everyone is here?"

I am afraid to leave the house.

Am I the only one who feels this way? Am I the only one who has experienced this type of pain?

 

[CELDamage]

They constantly monitor my pain medication. I see the doctor in charge of my pain medication once to twice a month. I get blood tests every 3 months.

I know I am taking a high dose, but there are people who take 3 to 5 times the amount I am on now. It has been a difficult process trying to control my pain. Of all the pain medication I have taken Fentanoyl worked the best for controlling the pain, but unfortunately it made me extremely anxious and paranoid.

 

[farm]

I had terrible pain with my crohns as well. I was on Percocet 10/325 2 pills 4-6 times per day. They wanted to move me to a more powerful narcotic but I refused. Somedays I was literally unable to get out of the bed.
In time, and unfortunatly that is what it takes, my crohns flare somewhat calmed down and the pain became bearable again. I wish you the best of luck.
And you can still get addicted to morphine, physically, even if you don't get that *high.* Trust me.

 

[kello82]

What do I mean by extreme pain. A low dull pain that starts in the lower right quad, where your appendix is. That dull pain starts to rapidly radiate from there around the right side all the way to the left kidney. Then the dull pain builds to a sharp percing and stabbing pain which radiates out of the right upper abdomen, where the illeum is. Then cramps. It feels like when you get a cramp in yourcalf muscle only 25 times worse. It builds until you can not move, than you start to bend slowly to the right, curling in to a ball, your rectum feels like it's going to pop out, your groin contracts and then every muscle in your body contracts. Then you get an overwhelming feeling of diarreha and nausia. Then you vomit and if your lucky you don't loose control of your bodily functions.

Once my wife had to speed to get me to the nearest rest stop. A highway patrol officer pulled us over. When Itried to get out of the car he yelled FREEZE. I understood why, but I didn't want to deficate myself in the car. When I tried to explain he told me to FREEZE again. At that point the pain hit at it's fullest, I collapsed, vomited and deficated myself. He called an ambulance and they arrested me for being under the influence of illegal drugs. At the hospital they took blod samples and my doctor came to my rescue explaining my medical condition. The tests came back posative for narcotics, my doctor explained I had a legal prescription for Morphine and my attorney explained since I was not driving I had been falsely arrested. The state dropped the charges as long as I agreed not to sue. My most embarrassing moment in my life. It haunts me to this day. I spent 6 days in the hospital. They had to repair 3 small ruptures in my small intestine.

Another time I collapsed at work and again lost control of my body functions. I almost could not return to work the next day. Luckily it was a Saturday and no-one saw me. I just thought "what if it happens when everyone is here?"

I am afraid to leave the house.

Am I the only one who feels this way? Am I the only one who has experienced this type of pain?

oh
you are not alone, i have been there chad! and so have many of us. ive pooed myself SO many times, yes in public, yes ive had to speed off the highway to run into the nearest building for the toilet and its just AWFUL.
heres a thread that i started a while ago after i crapped myself in starbucks, i was SO upset.
http://www.crohnsforum.com/showthread.php?t=4674
a ton of other people shared their embarrasing stories, hopefully that makes you feel better that it happens to all of us! you dont have to feel embarresed here ok?

i used to get crippling pains like you describe when i had to poo, its so intense that you cant even talk, you cant focus on anything i know. and then the cramps of sitting on the toilet and passing the poo was no better than trying to hold it in.
the pain of mhaving a bm didnt require pain meds for me though, but it was still awful.

im also on narcotics right now. in april i had surgery to place an ileostomy and it went smoothly but i didnt heal right and now i have a condition called PPG ( a huge open raw sore of dead/dying skin areound my stoma). i was gradually incrasing percocet from 10 mg eventually to 60 mg per day with still barely anough relief, my docs were worried about that and put me on 25 mcg/hour fentanyl patch and now im down to 5-15 mg percocet, still have a lot of breakthrough pain, but i dont want more drugs and i manage.

our pain is really different i guess, but woulde i consider my pain extreme? yep.
what i do when i have a severe breakthrough pain (which is often, but) i pop a perc, LAY DOWN and BREATHE. ive found that focusing on my breathing helps relax my mind, which just a teeny bit, relaxes the area.
i also try and do what they call 'imagery',
i try and see the medecine calming the painful area, you know? its not like it magically fixes it but it helps relieve the stress of the pain a little or something? idk, but to me its better than sitting there all tensed up you know?
and sometimes i just scream. its all you can do sometimes but you HAVE to let it out. holding it in just creates more pressure in your body so just scream until you feel calm enough to be still.

allright, lastly, have a look at this thread. someone came on here a while ago asking about Spinal Cord Stimulation. most likely youve already looked into this with all the different pain doctors, but just in case its different than what you mentioned or something....
http://www.crohnsforum.com/showthread.php?t=6200&highlight=spinal

i hope that helps chad. i know its not much. i wish there was a magical painkiller with no side effects and stuff that wouldf only block the pain you want it too sot that you could still know if something else was wrong and all.

good luck

 

[Mazen]

Sorry to hear about all your suffering. i only have occasional sharp pains in my lower right abdomin and that feels like hell!

What Crohn's meds are you on? Are you on Remicade or Humira or some other drug that can control your Crohn's and maybe relieve the pain???

 

[D Bergy]

Your doctor's recommendation that you take no other remedies makes no sense at all to me. The only way you are ever going to get your mineral levels back up is to stop the inflammation. Pain killers are not going to do that, but eliminating the source of the pain will.

I hope you can find a solution.

Dan

 

[CELDamage]

I am currently taking Humira. I take 40MG injections once a week, which is double the usual dose of 40 MG by injection once very two weeks. I also take methotrexate 1ml per week by injection and 800 MG of Asacol a day.

Yes, without the Humira the pain is much much worse.

As for not takin any homeopathic remidies, well my cooper and iron levels are so high they are causing liver failure. I was just referred to the hepatology and hematology clinic at UW and my blood test show that my system is in such turmoil that they want me to stop taking everything, but especially not to start any thing new. They tried to stop the Morphine, but the pain just put me in the hospital. They used a special machine to block the nerves and I was off the Morphine for about 2 days and my blood levels got worse so they put me back on the Morphine. They did the same for the Humira and that did not work, then they took me off everything else, the methotrexate, celexa, nexium, tri-cor, prochlorper and Asacol. Nothing caused my levels to improve. So they tried a non-iron supplement and my Iron levels and Cooper levels went so high they were about to put me on dialysis, but fortunately they went back down after they stopped the supplements and put me on a high fluid diet.

They had me on Fentanoyl patches and suckers and they were great, until I went phsyco. I started having panic attacks and anxiety, paranoia, it was awful, crazy, just awful. As it turns out Fentanoyl can cause anxiety and panic attacks as a side affect so they had to switch me back to Morphine.

Yes, Morphine can become physically dependant. That's why I get tested once a month.

Thank you all for your support and your questions. I hope no one feels I was short with them. It's hard for me to type sometimes so I have to either take a lot of time or I have to be short.