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Sad Mom!
Regular Member


Date Joined Aug 2007
Total Posts : 58
   Posted 8/20/2007 8:24 AM (GMT -7)   
Hello everyone, I am new to this forum. I have been reading it for a little while. I was seeking answers for my 1 zillions questions and was surprise to find quite a lot of infos on this forum from other members who are sharing their experiences and express it in plain language. Here is my story! My 21 year old son was diagnosed with Crohn's this month, the colonoscopy showed ulcers on the colon, he had diarrhea for a few months with times when the b/m were going all day from loose to by bedtime being watery. The Gi put him on Pantasa 2x500mg 4xday and refered him to a Crohn's specialist who saw him at the beggining of the month of August and put him on Metronidazole and mentionned that he should read about 6MP and write his questions if any, since he feels that 6MP is better for him to stop the flare. Here is the deal, I am wondering if it is not more prudent to wait a little and give Pantasa a chance, since it's only the 2nd month he is taking it. His b/m have gone from watery 4-5 times a day to once or twice a day (morning and night). However, he has blood in his stool every now and then but he feels that the blood happens when he forces during a b/m. From a few drops on the tp to clear blood in toilet. What do you think? Your comments would be appreciated.
 
Thanks and have a good day everyone!
 
Sad Mom!

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/20/2007 8:38 AM (GMT -7)   

From all that I have seen here through the years, Pentasa is just not a potent enough drug to treat CD long term. He may actually get more symptom relief and healing from the metronidazole (Flagyl). However, 6mp is becoming more and more a primary drug of choice in CD treatment for inducing and sustaining long term remission, or at least moderation of symptoms, and it seems to be well tolerated by most patients. Do keep in mind that it takes 3-6 months for 6mp to reach full effectiveness. In some cases, GIs will combine 6mp and steroids until the 6mp kicks in.

If he is having frequent episodes of bleeding, that is a strong indication that he is still having raw ulcerations in his colon, which would be a sign that his current medications are not holding the line.

You'll find lots of personal stories on here re the various drugs used to treat Crohn's, and especially about how this disease is different for every patient. It is also important to keep in mind that posts on this forum tend to reflect the worst sometimes . . . not every Crohn's patient has to have surgery or has major life-altering symptoms. Lots of CD patients live generally healthy, productive lives, but they are probably less likely to post on sites like this one. Be grateful that his disease has been diagnosed at a fairly young age . . . time was, not that long ago, that a lot of us had to go 10-20 years with active disease, often diagnosed as irritable bowel or just "nerves", before the true diagnosis could be made. Scopes and other modern technology have done a lot, and there are always new drug therapies emerging.


Poopington McToot
Regular Member


Date Joined Jul 2005
Total Posts : 315
   Posted 8/20/2007 9:02 AM (GMT -7)   
Agreed. Before I had to have surgery, I was in remission for many years with a combination of Pentasa and 6MPs sister, Imuran.

I hated Flagyl though. I took that many years ago for an abcess. It makes your mouth taste like you're eating tin foil.

Good luck. I hope your son finds relief soon.

Poopington McToot
It's easy to grin, when your ship comes in...and you've got the stock market beat.  But the man worthwhile, is the man who can smile, when his shorts are too tight in the seat.


Sad Mom!
Regular Member


Date Joined Aug 2007
Total Posts : 58
   Posted 8/20/2007 9:11 AM (GMT -7)   
Thank you MikeB for your reply. I am just wondering since from what I have found so far about 6MP is not very good. Lots of side effects and the risk of developing cancers. I was upset to know that this is pure chemotherapy and it scares the heck out of me. I don't know, maybe I'm just too upset about all this and so worried about him that I don't have a clear view on things. I just feel that this new specialist is moving a little too fast. I know he has seen other cases, but I feel that things are just moving too fast. The bleeding is getting under control, I think Metronidazole or Flagyl is doing something. I also read about MAP and I would like him to get tested since he has been a milk consumer forever. He would also have milk with his meals and with his snacks, that was the only thing he use to drink. He now has cut down a little since I told him about MAP. I also forgot to mentionned that this specialist put him on iron supplement since he was anemic, his hemoglobines were low and his white blood count was high. The doc says it was from the inflammation.

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 8/20/2007 9:34 AM (GMT -7)   
Sad Mom...I wish I had some definite answers for you, but with so many variations of the disease the only thing for us to do is try to find what works for each of us. For instance, I can not take flagyl at all even though it was starting to heal my fistula. I can however drink milk without any problems---others can not handle any milk.
Iron supplements are common. I am on iron and B12 supplements plus other daily vitamins to make up for what I can not absorb or the part of my intestine that was removed.
As far as 6mp, I had many of the same concerns you have. The only thing I can recommend is research as much as you can. At this point in my disease status (many years with remission on just Pentasa, but recently falling out of remission), I am still waiting to start the 'big gun" medicines. That is my personal preference based on the meds versus my current ability to enjoy life without them. It is a give and take and you have to decide when the quality of life issues outweigh the concerns of possible side effects. Many people on here have found great relief with 6mp and I would go through the old posts with 6mp or imuran in them to read the details from those that have had the experience.
By the way, the bleeding, is it bright red blood or darker. That would be a good thing to tell the doc as it gives an idea where the blood is coming from (fissure, internal issues, etc)
Dx'd '90 (emergency rupture), symptoms ignored long before that, stable with Pentasa, '03 fistulas and bad flagyl reactions, only on B12 and vitamin supplements now
I'm riding on the escalator of life....


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/20/2007 10:01 AM (GMT -7)   

The 6mp dosage used for Crohn's is far lower than that used in cancer treatment (primarily for leukemia.) There have been a number of studies done of long term 6mp usage for Crohn's that show no appreciable increase in cancers . . . and in fact, the primary risk of developing bowel cancer in Crohn 's is uncontrolled inflammation. While some people do report side effects from 6mp, they are a small minority (I think the rates run under 5%) and those effects can be easily reversed by simply stopping medication.

You may want to see how the flagyl does . . . I was on it after diagnosis for some time and it did a fairly good job of controlling my disease, but results from 6mp have been better, with no side effects.

One thing to keep in mind with Crohn's is that there are two or three new drugs developed every year these days. I would not be surprised if by the time your son reaches his 30s there is a whole new arsenal of treatments out there, and that 6mp and Pentasa and even Remicade have been relegated to the scrap heap.


Sad Mom!
Regular Member


Date Joined Aug 2007
Total Posts : 58
   Posted 8/20/2007 10:19 AM (GMT -7)   
Thank you for your time, I appreciate the information you are giving me and it does give me a little peace of mind. How long did you take the Flagyl. The doctor gave him 2 weeks of it and renewable for 2 times. I am not sure how to handle that, but we will ask on the next time we see him in early sept. I have to be honnest and let everyone know that I am still skeptical of the dx, since nobody in both side of our family has or ever had Crohn's. The biopsies taken during the colonoscopy came back normal according to the specialist and from what I understand, it could have shown Crohn's. If it did not, does that mean it is not Crohn's.

Thank you again and I can't believe just how generous the people are in this forum. I guess most of you understood that in life, the more you share the more you have!

Sad Mom!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/20/2007 11:03 AM (GMT -7)   
Hi Sad Mom and welcome to Healing Well. I think MikeB has given you some good information. I did want to add one thing. I am the youngest of 5 children in my family. I am also the only one in my family (both sides and far back) that has been diagnosed with Crohns. I have 3 grown daughters and 5 grandchildren and none of them have it either. So just because no one else has been diagnosed in your family with Crohns does not mean that your son doesn't have Crohns. Sorry!! Also, as MikeB stated many have taken years to finally get a diagnosis and that was after having every test in the book. Also, many have thrown out the MAP theory among many other theories as the cause of Crohns. Some say its from bacteria in our intestines. Please don't get sucked into these sometimes wild theories.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/20/2007 12:10 PM (GMT -7)   

It used to be that GIs prescribed Flagyl for extended periods in CD, but the practice now is to use is for a briefer period -- weeks instead of months -- to induce remission and then to go with other drugs for long term therapy. So the two refills you quote are about right.

While there is a confirmed genetic link to Crohn's disease, it is not so strong that it clearly runs in families, like cystic fibrosis or some forms of cancer. So just because you have no close relatives with CD, that does not exempt your son. I suspect if you did a poll you'd find that most folks on here have no familial pattern.

The biopsies taken during a colonoscopy look for several things, among them granulomas, to help confirm the Crohn's diagnosis. However, those markers only show up in a minority of biopsies. The diagnosis is based on clinical picture -- symptoms over time, exam -- and appearance of the colon and terminal ileum in the scope. The number one sign is ulcerations and skip areas of inflammation. Also keep in mind that your son is fairly young and has probably not yet developed some of the pathologies that would show definiitively on biopsy. He is, however, right at the age when a very large percentage of CD patients begin to show symptoms and receive their diagnosis. I think you can accept this diagnosis with some confidence. There's a reason for chronic GI problems and bleeding over time, and that reason is usually Crohn's when the scope confirms it.

You have also been urged to avoid falling in love with the MAP and other trendy theories, which is good advice. It really doesn't matter what causes a runaway immune system reaction like Crohn's (or arthritis or lupus or MS). What matters is what you do to treat the synptoms and minimize the damage once that process has been identified.


Sad Mom!
Regular Member


Date Joined Aug 2007
Total Posts : 58
   Posted 8/20/2007 6:26 PM (GMT -7)   
Thank you for your replies and yes it is bright red blood, the fresh type, just like when you just cut yourself. Also I do want to keep an open mind about changing his meds, I just feel that it's a little prematured since he is capable of functionning very well. He goes to university and is capable of going all day without b.m. and does not run to the bathroom when he gets home. As I said he now goes 1 or 2 times a day, monings and nights, he never had to wake up to go to the washroom at night not even before the meds.

Again thank you all, it's nice to have people to talk to.

Sad Mom!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/20/2007 6:36 PM (GMT -7)   
Sad Mom I was diagnosed at 18. I had two flares, one when first diagnosed and it lasted 3 mos. My second one was 4 years later and lasted about 2 mos. Then I enjoyed a 20 year remission. Do not fool yourself and think your son doesn't have Crohns. He just was lucky like me and responded well to the medications. I have a co-worker who is 23 and was diagnosed 2 years ago. He only had one flare and lives a perfectly normal life. You would never know he was ever sick. I had 3 daughters and all were born after my diagnosis. I enjoyed a long time between flares. Life isn't as great now, but its still not bad. Some of us have milder forms of the disease. I never (knock on wood) had a fistula or fissure. But I did have to have my 1st resection 27 years after I was diagnosed and another 3 years later. So maybe his won't act up until he's much older. God Bless.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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