This is a summary of what my grandson has been through:
- Hospitalized Dec 19, 2008 - diagnosed with Crohn's, put on IV hydrocortisone, cipro and flaggel antibiotics.
- Sent home with prescription for Prednisone 40mg. 12 weeks on Prednisone - for 10 of those weeks, UC (or CD?) was brought under control. GI changed her diagnosis from CD to UC. Diahrrea stopped, stool was formed, no aches or pains anywhere. Life was grand again!
- At week 8 of Prednisone, GI specialist prescribed Asacol 800 x 6. - At week 10, started Asacol 800 x 6 and within 2 weeks, all UC symptoms had returned with a vengence. With every further dose of Asacol, the worse his symptoms got.
- Mar 19, 2009 GI took him off Asacol. At no time did his Family GP or his GI specialist put him back on a maintenance dose of Prednisone or any other medication to maintain his UC. Several creams were prescribed for fissures and hemroids but none worked.
- Apr 9, 2009 was hospitalized again - put on IV Hydrocortisone 75mg (eventually upped to 100mg) and morphine for pain. This treatment continued under the care of an intern for 3 days.
- Allergic reaction to Morphine, was put on Oxycodone.
- On the 4th day of hospitalization, his GI specialist seen him for the 1st time and changed his diagnosis back to CD.
- He was taken off pain medication (?). I demanded his GI treat his pain. He was put back on Oxycodone.
- He has been hospitalized 8 days (9 nights) and his CD (UC?) is still being left untreated other than "hydrocortisone" which has not lessened any of his symptoms one bit - actually I believe it is making them worse, or something is!
- His GI is trying to get him accepted onto the Humira treatment program starting Apr 21, 2008 but (other than hydrocortisone) she is not treating his CD/UC with any other meds.
I have read here on this forum, of over 2 dozen different types of drugs being used to treat CD and UC. Just because Asacol 800 didn't work for my g'son, why are they not trying one of the MANY other drugs available? Why would they leave his UC/CD untreated from Mar 19 to Apr 23? That is 34 days without treatment! The pictures of his colon show massive ulceration, inflammation, and scarring! He has been left to deal with severe pain and all the horrible symptoms that have arisen from this disease, untreated! How much unnecessary damage has been done to his intestines due to "no" treatment?
This is a traumatic way to treat a 19 year old, faced with an incurable disease that has crippled him to the point of being hospitalized - a disease that will put a strain on the rest of his life. And quite frankly, I find this GI's treatment to be rather inhumane!
My question - is this the "normal" route taken by GI specialists in dealing with UC or CD?
19 yr old Grandson - Dx UC 12/08; DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09 - Hospitalized (2nd time) with
UC CD flare
Current Meds in Hospital on IV: Hydocortisone
75 100 mg, Oxycodone 10mg every 6 hrs, diltiavem gel 2% in Proctodan hc, xylocaine 2% gel & cream.
Is still in hospital and scheduled for 1st Humira infusion Apr 21/09.
Previous Meds: Prednisone 40 mg;
Asacol 800 & Morphine (can't take - is allergic to both)
Hospital Suppliments: boost, low fiber diet.