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01-26-2012, 05:42 AM   #1
irene
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Crohns of sick

On jan 3 I have can't bearer pain so admit hospital , when admit they nvr do anything just keep ask to diarrhea to clear bowel so I have to do wat dr ask, I diarrhea for ten days till anes skin broken n swelling , mostly scarcely is bleeding for 5 days they don even care just keep ask to do all scan MRI ct scan and many enoscopy coloscopy ..... But still can't find out wat happen, one day they push me for a terrible scan after tat scan I back to ward feel very giddy weak no breath tired n sleepy, so ask nurse y , they infron dr so they take my blood to test, result is my potassium drop red blood cell drop Bp drop n fever, I tell dr I have pain ask for pain killer jab they don give, ask me relax so I confuse y they don give humira or remicade to me , keep give normal medi like steroid n azatherpine . Hope someone can me y ? After discharge still have pain when use strength or walk too much, isn't crohn really can't have stress or work, I don wan this kind of life is soo suffer, anyone can tell me?
01-26-2012, 07:34 AM   #2
Angrybird
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Hello Irene, I would say you need to go to your doctor and keep pushing to get some more inforation on what they are going to do to help you. Be very insistant and make it very clear that your current meds are not working. Have they said what your tests results are showing with regards to inflammation?
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
01-26-2012, 08:52 AM   #3
irene
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They give the answer is can't find the pain from where and inflammation have been clear other just go back take my medi that why I very sad and worry , today went market and push my mother in wheelchair suddenly pain again so I took pain killer just can control some pain but not all, even I want to find job also can't becos of this sickness when I stress also pain now most worry is cant go toilet without medi , can I know u have crohns can u carry heavy stuff or stress ? What kind of medi are you taking? And my dr nvr answer my question what shd I do ?
01-26-2012, 01:55 PM   #4
Angrybird
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I do tend to carry fairly heavy items at times but will then regret this., I do get a bit stressed but sometimes a nice hot bath of a restful day at home helps. I am on steroids at the moment for inflammation and an immunosuppressent called Azathioprine to then keep things under control once it kicks in, then I should be able to come off the steroids. With regards to your doc I would complain if they are not actaully helping you and answering your questions and try to get to see a different one.
01-27-2012, 08:11 AM   #5
irene
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Now I have anther problem again ya since last year sep start dr gv me azathprine & steroid too since no use still have pain but dr say Donno pain come from where, everyday I take contipsion medi n lactose still can't go toilet so wat kind of medi can let go I feel very suffer even use all my strength n force also can't after stoma start to pain, pain dr give me take pain killer pill everyday too , name is oxynorm 5mg when pain n OxyContin 20mg take twice a day, do u think I shd chg medi or try on humira ?
01-27-2012, 09:36 AM   #6
handle
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Hi Irene,
It is possible the pain killers are causing your constipation. Please don't force when you try to go to the toilet. Constipation from pain meds comes from the bowel not sensing the food properly, so it doesn't move properly. Usually something to stimulate the bowels is needed (dulcolax?). Please check with your doctor.
good luck.

Last edited by handle; 01-27-2012 at 09:51 AM.
01-27-2012, 10:43 AM   #7
irene
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Ya, our pain comes from bowel or intestines recently my back bone feel pain Donno isn't bcos medi or wat I hear tat we take medi got many side effect so first is my are all spoiling one by one , now I feel tat I very weak n tiredness feel very slpy if walk far my intestines start pain the pain is like period pain but not period coming then some time the pain like needle inside if serious pain will be like stoma going to burst feel the press the stoma till flat I noe stress can cos pain too but how to get the stress away
01-27-2012, 04:45 PM   #8
Miss Underestimated
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It sounds like you have more than just stress. Do not give up - keep going back to the doctor.

I'm sad that you are having such a bad time.
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*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
01-29-2012, 08:18 AM   #9
irene
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Today feel not soo good cos stoma keep feel bit pain and uncomfortable inside like boiling n stoma very hot when have pain my stoma very soft not hard isn't when serious pain will hard of stoma? I don tink soo b4 2006 I have op of small intestine and appendix , after discharge I feel very restless tiredness sleepy n breathless y will become like tat, my pain come from whr? Even dr tell me he Donno too, do u tink I should try the jab from remicade or humira can give me suggestion , I don't want to have pain everyday it make me feel suffering , isn't take omega fish oil can control crohns? Our food also can cos pain ? Then what we should eat, I love vege n fruit a lot what kind of vege cannot eat and fruit, what food must eat I really Donno what is good , since I now have this sickness everything I settle my own cos my mother Donno anything so b4 I just go follow up what dr say I follow nvr ask or noe about my problem
01-29-2012, 08:29 AM   #10
Angrybird
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I don't have a stoma so cannot advise too much on this although I would say if it painful and hot you need to have it looked at quickly just to make sure there isn't an infection. You definetly need to ask you doctor about further treatment to help with the pain as well. Food is also important when it comes to trying to make symptoms a bit better, too much fruit and veg may not be good for you. Neither is dairy or caffeine or foods with little pips and seeds. Have a look at our diet forum as there is a lot of information about this here.
01-29-2012, 08:37 AM   #11
irene
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So mean maybe inside infection do feel hot I try to use cool pack but still hot my dr keep say just keep medi no big problem but he Donno the pain we suffer when pain come we can't do anything
01-29-2012, 09:03 AM   #12
Angrybird
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If you can please try and see a different doc, just to get a second opinion and hopefully some better medical assistance.
01-29-2012, 09:05 AM   #13
irene
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But I am in Singapore and can't afford to ask chg dr cos is gov hospital If ask chg dr will how to treat me I Donno
01-29-2012, 09:11 AM   #14
Angrybird
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I see, then I would keep going back and your doc until they help. Do not let them put you off and insist that they help you with the pain, is there anyone who you can go to if you are not happy with the care you are getting?
01-29-2012, 02:22 PM   #15
handle
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Hi Irene,
When you say your 'stoma' is pain and hot, do you mean stomach?
I agree with Angrybird, you should try to get better care. Take someone with you to the doctor to help you talk with them.Try Humira or Remicade maybe that is the right medicine for you.
good luck.
02-02-2012, 08:28 AM   #16
irene
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Till now almost everyday still have pain in stomach really Donno how to stop the pain even take oxy also same now can say already addict to it now the pain is on the left side special in when carry heavy things or walk long times the pain sure come then can't control now everyday just eat one meal when pain come no feel to eat . I have problem in my married too also worry my son my mother isn't my stress come from here but I never think of it , sometime in the nite suddenly feel to cry n feel very sad y become like this isn't going mad of me
02-02-2012, 09:01 AM   #17
ekay03
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hi Irene, I have been following this thread and I am sorry you are in pain. I agree with Handle. Next time you see the doctor, you should take somebody with you. When you are in pain it is hard to talk to the doctors. Just dont give up!
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