update on sons crohns

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bac52
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 4/27/2009 7:51 AM (GMT -7)   
Have not been on website in a while. Son is 27, diagnosed with crohns, probably had for a few years.
developed fistula in rectal area, had surgery to correct, took long time to heal. Currently 8X daily pentassa, cypro, 6mp now uped to 1 1/2 pills. Most recently had blood work come back with very little inflamation in colon and also mentioned that he felt the best in 2 years. Less than 1 week later, not feeling well, feels as if there is another absess or fistula developing along with some rectal bleeding. Surgeon does not want to go in at this time, would like him to be on the extra 1/2 pill of 6mp and see what happens? His crohns seems to presenting in the rectal area, and i guess hard to treat? I wish i could do more for him, i am use to fixing the problems for my kids. Is there anything more i can do for him besides get him to good doctors? Does anyone reading this have similar crohns with respect to where it is presenting? Thanks for listening!

Anniegetyour gun
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 4/27/2009 9:18 AM (GMT -7)   
Hi Bac 52
I am also a mom with a 26 year old son who has suffered incredibly over the past 2 years with peri-anal fistulas and abcesses.  Unfortunatly he has had a large portion of his b-tt sliced away because of the recurrance of fistulae.  He was only diagnosed with Crohns after all these surgical procedures (and 2 years later) and is now taking 100mg Imuran (i think 3 times daily) with Flagyl and Cipro.  He ended up having a "temporary" colostomy in October 2006, which was supposed to be reversed, but due to ongoing infections cannot and may not be done.  He often says that the colostomy is the easiest part to deal with.  The pain and inconveniece of the fistulas is horrible.  He lost so much weight is about 1,76m tall and weighs 66 kg. Because of the pain he sits lop-sided on one leg and this is now starting to show in his posture.    Thank the Lord he has an absolutely wonderful attitude to life and just takes each knock as it comes.  Just like your son it has not affected his colon or intestines at all, but the minute he starts feeling better it seems to flare up again.
 
He is awaiting authorisation from the Medical Aid (South African type) to start on Remicade (Revellex) but so far they have declined, and the cost is, as I am sure you know, extremely high.  God willing we will make a plan for him to start this medication if its going to help him.
 
I just really want to encourage you that as a Mom, I feel your pain and know that it is so difficult to watch a child suffer like this.  We cannot understand why people so young have to be subject to this horrible disease.  I just try every day to encourage him and uplift him when he feels down.  Apart from prayer there is not much else we can do.
 
This forum has given me incredible encouragement, because when our son got sick, we honestly had never heard of or experienced anything like he had.  At one point I thought he was the only person on earth with this condition, but it is encouraging (in a sad sort of way) to know that there are many others out there also.  It is when I read their story or thread and see that they do still have courage, a sense of humour, laughter (at themselves) and most of all hope for the future that I am encouraged.  Please stay strong for your son.  Love and kind thoughts .... Anniegetyourgun
Concerned and loving Mom
Johannesburg - South Africa


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/27/2009 9:27 AM (GMT -7)   
Hi worried mom you are doing the best you can for your son just being there and supporting him is a great help and finding good doctors is a bonus.Those abscess and fistulas are hard to heal and can come back i know that is not what you want to hear but its true were else is his Crohn's active at is it just the rectal area?How long ago did he have the surgery to drain the fistula? Try not to worry i know its easier said than done but you are a great mom and its so hard to see our kids suffer in pain but really just listen to him be there for him let him vent if he has to how old is your son is he newly diagnosed?Keep ua posted on how he is doing ? Jenn smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


bac52
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 4/27/2009 3:03 PM (GMT -7)   

His surgery to drain the fistula was i believe about 8-9 months ago. He had some pain and bleeding for about 2 years prior to diagnosing crohns. When first diagnosed Dr. said case was so mild was leary to put on crohns Meds.

Have you heard of 6mp ? Is it typical for a crohns patient to be slightly enemic? 


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/27/2009 9:18 PM (GMT -7)   
bac52 said...

His surgery to drain the fistula was i believe about 8-9 months ago. He had some pain and bleeding for about 2 years prior to diagnosing crohns. When first diagnosed Dr. said case was so mild was leary to put on crohns Meds.

Have you heard of 6mp ? Is it typical for a crohns patient to be slightly enemic? 

Hi bac52 yes it is normal for crohns patients to be anemic especially were he is losing a lot of blood did he get his counts checked to see how low the blood is has he ever had a blood transfusion they make you feel so good really,your other question yes mp-6 is a very popular drug of choice for crohns patients i hope that helps. Jenn


Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.

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