Meds stopped by doctor and no treatment.

[prestonc]

Recently diagnosed with Crohn's at the ripe age of 40. Was taking Octasa (mesalazine) 400mg daily and 5mg Prednisolne when needed for flaure-ups. I've been managing quite well until now my consultant decides to stop all medication. I've had no mediaction for over a year now and I'm suffering quite bad with IBD and fistulas. Doctors will not give me any medication as consultant has added notes to my records not to prescibed anything. The prednisolne (5mg over 3-5 days) was the only drug that seemed to help me greatly and would restore my energy levels when I felt like hell in a hole. Doctors won't prescribe it to me because of side effects and not a treatment for my condition. But when I say it helps me get through flare ups and I feel well enough to get out of bed, they ignore me and say it's is not good for me. All of the information I have on IBD and Crohn's say that prednisolne is known to help many people with this condition, but my doctors say otherwise. Don't know where to turn now and no help or advice from doctors.



Anyone help or advise.

 

[Scipio]

The prednisone does help quite a bit with Crohn's. It is especially useful for inducing remission that can then be maintained with other medications. The doctors are right not to want to give it to you long term, because it has pretty serious side effects. You need to find a different medication for the long term - something such as immunsuppresants or biologics.

What I don't understand is why your consultant doesn't want you on any medication at all. That is contrary to pretty much all modern medical advice. Docs may disagree about which is the best medication in any given case, but they normally all agree that Crohn's patients need to be taking something. By far the biggest health risk that Crohn's sufferers face is not from medication side effects but from the long term damage caused by untreated or uncontrolled Crohn's disease.

The instances I've ever heard of where docs prescribed no medication at all are only in the very mildest and most stable cases. And yours doesn't sound like it fits that description.

You should go back to your consultant for a follow-up to revisit your current condition. And failing that you may wish to change to a different consultant.

 

[prestonc]

Thanks for the advice Scipio. Since leaving hospital I have not had any serious flares and the consultant cannot establish if Crohn's or Colitis is the cause and I am only clinical diagnosed as IBD/Crohn's. The Prednisolne was only 5mg daily over the course of 3-5 days to help with iflammation and also I have Hidradenitis Suppurativa which had gone untreated for several years without any medication and is now very severe stage with several open/leaking fistula's. I can't see 5mg of Prednisolne being too much of a risk and for the benefits of relieving my symptoms it's better than nothing. At the moment all I take and what is being prescribed is Paracetamol. I'm an NHS patient in UK and I don't have any other options. It's like talking to a brick wall and not get any real answers from the doctors.

 

[Kas8173]

Did you have any investigations such as a colonoscopy or MRI / CT when you were diagnosed with Crohn's?

If these investigations had significant findings then you could use these as evidence to prove to the doctors that you need treatment.

If you don't feel like the consultant / GP who you are seeing is properly managing you then you have the legal right to ask for a different doctor.

I hope you find a doctor who can manage your condition better.

 

[Deleted member 431298]

prestonc - have you had a calprotectin test done ? (analysed from a stool sample). If not i'd insist on having one made because if that is elevated it is a clear indication you have IBD and that you are in a flare.

 

[Guerrero]

Yes I agree with all the answers, and i'm surprised your doctor dont want to give you a treatment. Almost all IBD patient need a long term medication. I'd seek for a second opinion.

 

[prestonc]

Thank you for all the positvie replies and yes (KarlB) I have had those tests and the results confirm ulcerations in large intestine. I was hospitilized for 10 weeks after losing 4 stone in 2 weeks with severe diahorea and massive pains all through the gut. OleJ not sure about a calprotectin test. When I left hospital I was goven a course of Prednisolne which really put me back on my feet. I had quite alot of these tablets left over when the course finished and every few weeks I would slump back into feeling bad so I would take a couple of 5mg Prednisone. This really boosted my energy levels and I was able to get through the day without being confined to my bed. I explaind this to doctor's and consultants and they now refuse to prescribe the Prednisolne. I'm totally stumped why when I feel much better taking it. Just wondered if anyone else with this disease has taken Prednisone for their symptoms ?

 

[NuttyGuts]

Hi Prestonc,
I have active Crohn's with a stricture right now and endured eight days of awful pain before my GI doc sent the prednisone prescription. After taking the first pill, I thought it was a miracle! No pain! But it has been two months now- I take 20mg a day, and I can't wait to get off it. It's like a roller coaster ride with energy and no pain one day, and exhaustion and pain and crankiness the next. I can't sleep more than five hours at night, and it no longer always takes the pain away. My doc just started me on azathioprine, 100mg a day, and I will soon start Remicade infusions. A week after I start the Remicade, she wants me to start weaning off the prednisone. I understand why now.
You may need the prednisone as a temporary solution for now, but I would talk to your doc about a longer term solution.
Best wishes!

 

[Deleted member 431298]

OleJ not sure about a calprotectin test
You mean you don't remember if you gave a stool sample?
A GI should know about the value of fecal calprotectin (FC). Several research projects concludes that FC is a very precise method for diagnosing IBD (and the severity).
One example is this article: Diagnostic accuracy of fecal calprotectin in assessing the severity of inflammatory bowel disease explains it. The conclusion states:

Discriminating IBD patients from healthy controls was better for FC than conventional inflammatory markers. Additionally, the results produced by FC correlate with the severity of IBD.

 

[prestonc]

OleJ not sure about a calprotectin test
You mean you don't remember if you gave a stool sample?
A GI should know about the value of fecal calprotectin (FC). Several research projects concludes that FC is a very precise method for diagnosing IBD (and the severity).
One example is this article: Diagnostic accuracy of fecal calprotectin in assessing the severity of inflammatory bowel disease explains it. The conclusion states:

Discriminating IBD patients from healthy controls was better for FC than conventional inflammatory markers. Additionally, the results produced by FC correlate with the severity of IBD.

Interesting read, I think one stool sample was taken 3 days after being admitted to hospital which I think is what must of been a calprotectin sample. The consultant wants to take a biopsy of intestine but I wouldn't have the procedure becuae of the risks involved and I'm worried I may end up with a bag or make my condition worse if the procedure goes wrong. I'm not sure what the exact procedures are for diagnosing the disease but I have had countless blood tests, endoscopy, MRI scans.

 

[Scipio]

If you have had or will have a colonoscopy then biopsy specimens are normally taken from the large bowel and terminal end of the small bowel as a routine part of the examination. It's not a big deal and does not present much risk to you.

Getting a look at tissue specimens from the affected areas of your gut is a key part in determining the nature and severity of your disease.

 

[Deleted member 431298]

If you have had or will have a colonoscopy then biopsy specimens are normally taken from the large bowel and terminal end of the small bowel as a routine part of the examination. It's not a big deal and does not present much risk to you.

Getting a look at tissue specimens from the affected areas of your gut is a key part in determining the nature and severity of your disease.

I agree. Intestinal wall biopsies are normally nothing to worry about. I hope you will find relief soon.