How to deal with the pain..??

[louisesarah]

I am just looking for some advice. My mum had been in and out of hospital for at least 10 years with stomach pain before being told she has Crohn's. For a full 3 weeks now she has been in alot of pain, constantly in and out of the toilet and probably had about 5 meals in total. Being sick everyday and some days can't even keep water down. She went into hospital and was told she has an infection but was kept in for 1 day. Doctor's are just telling her to take cocodamol (even though another doctor said she can't take them with Crohn's) and they won't give her appointments so the 2 times she has been seen lately is because she has went in and insisted on being seen as she can't deal with the pain. When she was last in the doctor's, she was told it could be ibs as well as Crohn's so was given buscopan, but since she took it 3 days ago, she has been doubled over in pain and just always cold and falling asleep. She doesn't want to go to hospital as the last time, they basically made her feel like she was wasting their time as they told her, next time, go to your doctor. Really worried that it is still an infection..?? She keeps coming out in rlumpy rash on her arms that only stay for 10 minutes. She also has copd. What do people do for the pain..?? Any other advice on what she should be doing..?? Would really appreciate it, she really can't deal with it much longer.

 

[AmphipodGirl]

If she really has untreated Crohn's disease, what will help her is treatment specific to Crohn's. How was her Crohn's diagnosed?

If it's Crohn's, then Prednisone (that's the US name, I think it's Prednisolone in the UK) could have her feeling better in days. It's not safe to take long term, so she would need to transition from that to other drugs, like 5-ASA, immunomodulators such as 6-mercaptopurine or azathioprine, biologics such as Remicade or Cimzia, or some combination of the above.

If the Crohn's diagnosis is not definitive, they need to figure out a firm diagnosis. Endoscopy, colonoscopy, MRI, CAT scan can all be helpful in diagnosing Crohn's. A stool culture could confirm or rule out infection.

So I would aggressively pursue accurate diagnosis followed by appropriate treatment. In the short term, gentle heat applied to the belly (hot pad, hot water bottle, hot bath or shower) might help some, but really she needs diagnosis and treatment.

 

[AmphipodGirl]

Also, has she experimented with which foods she tolerates best? When I had active Crohn's for 10 months before diagnosis, I did best if I ate a very low fiber diet. She could try eating just white rice for a few days and see if that feels better. That would also serve as an elimination diet for common sensitivities such as dairy and gluten.

 

[louisesarah]

She has had all the tests so many times as this has been going on at least 10 years (I think about 15 years really) it's just a year ago she was told Crohn's. She has been on predisolone for about a week now and lately she has just been alot worse. Keep telling her she should just go to the hospital again (incase it is sepsis or possibly the type of cancer that you can get with Crohn's (she has had breast cancer 3 years ago) but she doesn't want to go after last time. Honestly I don't think she has ate anything that is ok for her so she just doesnt eat but will say she should try just rice for a few days at least. She has tried a hot water bottle but didnt help.

 

[aypues]

Go to a liquid elemental diet, like Orgain nutrition drinks only.
After that very low fiber diet.
Try Levsin for cramping, prob similar to buscopan though. I take it with tylenol for pain.
Prednisone if still on going pain to control the flare.
How are her imaging tests? Does she need surgery at this point?