Looking for answers.....

[DL2011]

Having just joined the site and read so many interesting individuial accounts, I thought I'd share my experiences with you, at a time when I am in the midst of a nasty flare.

Short History:

I was prescribed a medication for acne in 2004 called Roaccutane. Its a very powerful drug. A few months in I started developing severe pain in lower left side, central belly area and bleeding. This became more and more severe. I was visiting the toilet up to 30 times in a 24 hour period with bleeding, mucus, extreme fatigue and distension. After stopping the meds, the symptoms continued and do so to this day. No prior history and/or family history of bowel disease. Probably due to the drug, but too late for that now.

Diagnoses:

Diagnosed with Extensive Ulcerative Colitis in March 2005. Rediagnosed with Crohns in 2008 and March 2011, UC again (3 different IBD specialists).

Drugs:

Asacol x 6 daily
Prednisolone x 35mg (current) but not stable at all
Amitripyline x 10mg daily
Calcichew x 2 tabs daily

Intolerant of Asacol and HydroCort Enemas, Azathioprine, Methotrexate, 6MP (affects liver and kidneys) and not being offered Infliximab/Humira as a result.

So....my current specialist, who admittedly, doesn't know my full history and drug sensitivities is advocating surgery. Because, the only period of remission I've ever expereinced in the last 6 years (being low pain, bleeding) was a year ago until about 6 weeks ago. So not very long in the scheme of things.

So, I am looking for answers.....

1. How do I consider surgical options when my diagnosis is not agreed on by different consultants? How do I know if it will help?

2. How long is it safe to stay on 40mg of prednisolone? My past two attacks have left me on IV Hydrocort in hospital, but I seemed to respond to 40mg pred this time around, although, having dropped to 35mg I've completely relapased. This time i was on 40mg for a week and then 35mg for a week.

3. How near are we to a medical cure for UC / CD?

4. Has anyone participated in drug trials for these conditions and wish to share experience and knowledge of what the future may hold?

Thank you.

 

[ameslouise]

Hi DL and welcome!

That's a real bummer if the Accutane caused your IBD! Here in the States there are many class action lawsuits in progress for people that got IBD from Accutane.

Some opinions on your questions -

1. It's difficult to consider surgical options without a 100% diagnosis! UC and Crohn's offer different surgeries with different outcomes. For example, with UC, if you remove the colon, you remove the disease. You would be eligible for a j-pouch. But with Crohn's if you remove the colon, it is likely you would need a bag because most surgeons would't give you a pouch with Crohns (because the pouch is made from small intestine and most Crohn's eventually hits the small intestine if it hasn't already).

2. Most docs don't want you to stay on pred for too long, esp at that high dose! There are many long term side effects, like osteoperosis and adrenal failure.

3. How near are we to a cure? Not near enough I don't think!

4. There are some on here that have participated in trials - you can search around and find some info on that.

Have you discussed any of the biologic drugs with your docs? You would really need a clear dx to decide which medicinal path to go down.

Good luck finding your answers and finding something that works for you!

- amy

 

[MADiMarc]

Hi, DL!
Just a note to say hi. Amy covered your questions very well, I think. I agree that treatment is going to be a bit difficult for you as you can't get a definitive diagnosis between UC & CD.
Poke around the forum a bit, look at the sub forums. You may find your answers.
Good luck,
Michele

 

[Jer's Girl]

Hi DL!
I agree with what Amy said. I’m sorry you are going through this. Making these kind of choices can be very scary!

Welcome to the forum!