Concerned about UC (CD?) left untreated

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?

Thanks Sweetmelody. He had a 'scope during his 1st hosp. visit back in Dec /08 and was Dx'd with CD but within a day, GI changed that to UC. He was scoped again on Apr 15/09 just two days ago. GI now Dx'd him as CD again because of the severity of his colon.

Is it the normal procedure to go 34 (35 today) days without maintenance treatment other than "hydrocortisone" which appears to be making him sicker!? Why don't they put him back on the Prednisone short term? Antibiotics, Cipro, Flaggyl, maybe the fissures are infected? Something, to tide him over till the Humira treatment has been okayed? Why not try 6-mercaptopurine or a related drug like imuran before Humira?

On one website it states this "Cyclosporine A may be used with 6-MP or azathioprine to treat active, severe ulcerative colitis in people who do not respond to intravenous corticosteroids." My g'son fits into this catagory - IV hydrocotisone is not working for him, nor did 5-ASA (Asacol). Am I missing something here?


Can't they use diphenoxylate, loperamide, to treat the diahrrea?

hi there i feel for what your going through i felt so sorry for my mum when i was in hospital neither of us really knew what was going on and mum was so worried and strung out she ended upgetting sick as well dont let that
happen,look after yourself, as regards the treatment your grandson is receiving,i think it can appear as you are describing,quite pointless and inadequate,but the docs can only try different drugs and hope for signs of improvement, the ivsteriods have not worked so there is little point in giving more pred which is not as strong,
drugs like imuran will take to long to have any effect he sounds to unwell for that i think the humira sounds his best option,you could ask about cyclosporin like i had when i was at my last chance to hang on to my colon but opinion is very divided about that drug it worked me,you could also ask about an introvenous diet and complete bowel rest,they would not do this for me,but studies have shown it can be as effective as iv steriods forsome people sorry i cant be anyreal help i wishin your grandson as peedy recovery take care anna
ps sorry the caplock is broken on my computer

Maybe I missed this but why are they not using Remicade - it has a higher success in Crohns than UC and I believe it can heal fissures. A lot of people get it when they go to the hospital so it shouldn't take that long to get approved/ I don't think he should go that long with out anything

I'd suggest you and your grandson ask the GI for a conference. Ask why he isn't being treated with maintenance drugs; there may be a good reason that we don't know. Generally in the US, if Asacol causes problems they try Balsalazide for UC. It's somewhat normal for them to be cautious with narcotic drugs, because they can cause serious problems at times, but it's good that you spoke up. Ask about pain control, treatment plans and what they expect for him.

Specialists are always in a hurry, by the way. I've been known to casually lean against the door to talk to them so they can't leave until my questions are answered.

Get him a new doctor. It's crucial to have a good doctor with any chronic illness. When you get a new doc you can discuss alternate treatments with them.

Also, if your grandson has ever had a c-scope the distribution of the ulcerations would be indicative of which condition he has.

The biopsies from the 2 'scopes lean towards UC but his GI feels strongly that he has severe acute CD - at least 20 cm of his colon/rectum are almost swollen shut, deeply ulcerated, very angry red, inflammed and scarred. His pain is just below the belly button all the way down to his anus which has fissures (open, bleeding cracks) and external hemroids. The diahrrea is frequent, watery, very loose and bloody - he can't even make it to the washroom - they have a commode right next to his bed. If he eats or drinks even juice he immediately has diahrrea. He's lost a lot of weight. His GI says its a good thing his diahrrea is loose, otherwise he could very well be toxic. When we took him into ER at the hospital on Apr 9th, he was a bit jaundice at that point in time (yellow tinged skin).

The GI is obviously choosing the treatment based on my g'sons symptoms and his colonoscopy pictures and biopsies. She is not basing her treatment by his pain. I have been told she is "very good in her field" but has a lousy "bedside manner". My g'son can handle that as long as he gets treatment for his disease.

When I saw the pictures of his colon I right away thought of the symptoms of "ionizing radiation poisoning".... that's what it looked like to me. That's scary because our town has the 2nd highest rate of Uranium leaking out of the ground (radon gas) in our province. You can imagine what my thought were! I don't want to even go there.

And yes, he does need pain meds to get him through the "inflammed" part of this flare. My g'son is aware that he has an incurable disease and realizes all too well, that he will have to deal with these problems for the rest of his life. He was told by the GI that if he does have CD, then removal of the colon may not be an option.

I feel much better seeing him in less pain, even though he is still untreated. HE is more relaxed and is the one reassuring me that everything will turn out okay! He's got a very positive attitude.

I must stop writing such long posts. Sorry! Thank you for listening.

I am surprised that they haven't suggested removal of the colon - sometimes thats the only option when it is that bad.

WorrywartNana - I was in a similar situation to your grandson 5 years ago. I was on the toilet 30-40 times per day, always watery diarrhea with blood/mucous, and constant pain. I was on Prednisone 60mg/day, which worked for a few weeks then stopped working, then went through the whole list of other drugs ... none did a thing.

When the doctor told me my colon would need to be removed, I decided to try diet modification (he had kept saying diet didn't matter). My theory was my colon was reacting to bacteria, and that these were growing due to sugars (carbs) in my diet. I cut out ALL carbs - grains, sugar, rice, potatoes, fruits, etc., and ate only chicken breasts and low carb veggies for 2 weeks. Results - diarrhea gone, blood gone, started walking again, bowel movements down to 3X per day.

Within months I was running, swimming, and socializing again, and was excited when my wife became pregnant (son is now a little over 4). I have only had minor problems since then until recently (my current issue seem to be unrelated - upper GI/stomach), but mostly when I cheat and eat carbs (I still maintain a very low carb diet). As an added benefit, during the past 5 years I haven't needed a single drug.

What astounded me was the speed with which this change took place. Within 3 weeks I was a new man. Even Prednisone did not work so fast.

Post Edited (LuckyLindy) : 4/18/2009 6:58:49 AM (GMT-6)