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Crohn's Disease
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Posted 3/30/2015 2:59 AM (GMT 0)
I have severe case of crohns the past 3 1/2 years have left me bankrupt lost job cars and 2 hubby. I have been homebound except for dr appts or er. I have almost daily bowel obstructions even w not eating at all just drinking my ques is has anyone been able to work w pain meds helping w pain so I can stand up shower walk talk ect... I have constant obstructions I dont think I have to explain intense pain w bowel obstructions. Sorry so wordy and may not flow well but once I get started. Also my fear is with pain meds would u feel intense pain w bowel perforation or would it mask it??
Posted 3/30/2015 3:46 AM (GMT 0)
The problem with opiate pain meds is that it can slow down your gut, but not in a good way. What is causing your obstructions? Are you on any maintenance medication at all? No, pain meds would NOT mask bowel perforation most likely unless you are on a ridiculously too-high dose.
Posted 3/30/2015 9:22 AM (GMT 0)
Obstructions caused by severely diseased intestines and stomach. Last look dr dilated 6 areas of pelvic pouch and said there were many more and would not proceed wo a surgeon. I have had crohns since 8 yrs old. Once I hit 12 my disease never stopped I dont have flares its constantly full force and I dont know what remission is or what a flare may be because its always ACTIVE!! Currently no meds been on all of them and some work then I have severe reactions to EVERYTHING. not gonna list all but imuran stefoids flagyl cipro remicade humira methotrexate cimzia and more. Mines complicated with constant gi bleed tons of blood transfusions. I have reactions to blood iron u name it. I have to have a+ leucocyte antibodies irradiated. I just want have to go back to work trying to see if anyone has been through things like this. Sometimes I feel alone in this and get sick of dr shaking their heads saying u poor thing thats the last thing I want to hear. Dont feel sorry 4 me help mw. As far as tx wise there is nothing that can be done no meds no more surgeries ect.. But I do feel alone. They have wantwd me to go on ton over 3 years ago. I know what happens well complications that can happen w tpn its considered short term therapy. Also being a nurse it makes all of it bad cause I see tge pts w mild issues and the ones that are dying. I often wish I didnt know this much also sometimes wish I wasnt a nurse. Ive seen and taking care of intestinal transplants and let me just say their a mess all tubes u name it. Where I work 5 transplant were done within the month 4 were deceased. I wonder if it would b possible or if anyone could manage pain enough so thet coukd work. I hate narcotics and when I cant take pain anymore and or everthing swollen shut with no hopes of clearing soon gotta make trip to er. I have gone home on ultram but too much gave me seizures. Im just kinda lost and dont want to b homeless. Crohns disease affected my life in the following ways (like intervention lol) 2 failed marriages inability ti have children lost many jobs 2 houses 3 cars hubbys mc and more. Just need some insight or just advice ALL WELCOME PLEASE HELP!!
Posted 3/30/2015 11:41 AM (GMT 0)
I'm so sorry for your severe case of this disease. My daughter, who has a lung disease and severe GERD, has become homebound and is in a similar situation. To say life has been difficult is an understatement.

I've been on some type of narcotic for years for chronic pain, though I take very little, only one pill a day now, divided into three doses. I could not function otherwise due to arthritis and old injuries. Ultram gave me hives and wasn't very effective for pain. I've used either Talwin or hydrocodone, but what works well for one person may be different for another. There is such a stigma with narcotics that it's a needless shame for people who need it. For me, the side effect of constipation is a plus since my colon is a third shorter, but with your obstruction history, it may make things worse for you though you obviously need pain control. I don't think I'd be alive had I not had some modicum of pain management, and even at that, I still have little to no quality of life. I hope you and your doctors can come up with something you can take to help.
Posted 3/30/2015 5:37 PM (GMT 0)
The pain meds help you cope for now but they tend to freeze your bowels and have the possibility of addiction if taken months on end.

See my post on Managing Obstructions, from your condition you are meeting all the conditions that I have set for myself for having surgery. Good luck.
Posted 3/30/2015 10:46 PM (GMT 0)
I know that but my obstructions have mothing to do with opiods cause I dont take them. My obstructions are do to severe disease adhesions strictures and scarring I only have 15 ft of small intestestines more than 3/4 are severely diseased. Since about age 9 I go to nathroom on a good day about 60 plus times a day. With my obstructions their caused by just drinking mo solid foods at all for months im just gettinh ok w thebidea of tpn but its hard
Posted 3/30/2015 10:51 PM (GMT 0)
I just wondered if anyone who had exp w obstructions if they took pain meds could they talk breayh walk and possible wotk?? If they helped enough to fuction somewhat normally. I never in my wildest dreams thought crohns disease would b this bad. Normally u cant tellbim sick ive hidden it GREAT for over 30 yrs even docs would comment I just cant hide it ANYMORE u can tell im ill just by looking at me im embartassef about it.
Posted 3/30/2015 10:57 PM (GMT 0)
They wont do surgery last one was supposed to b 3 hrs turned into 24 hrs I ended up in icu getting last rites. I hot over 200 inits of blood and blood products cause w all scarring ect and disease they could mot control bleeding. I would have surgery in a second if it would help and someone would do it but thats not the case after over 8 second opinions so surgery wont help and its not an option
Posted 3/30/2015 11:09 PM (GMT 0)
My obstruction in 2010 accelerated to the point I was throwing up every day, was not eating at all, lost 40 pounds and was in constant pain. I was in denial since I was avoiding surgery because of the future pain, NG tube, catheter and being pinned to IVs for a week or more.

Yet I could not continue with not eating and the pain, I was not going to get better. When the intestines were removed (4 feet) the surgeon could not believe how even liquid could get through that area, it was solidly blocked, a solid mass of scar tissue. Now that I have been through the whole problem-pain-surgery-recovery cycle I know better than starving myself and living with pain with no end in sight.

Sadie - your name is one of my favorites, one of the beings I love the most is called Sadie but she is not human being ! She is such a character !
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