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FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/17/2009 6:31 AM (GMT -7)   
Welcome to the Forum!  I see you have asked questions in other posts about peri-rectal crohn's.  I thought I would start a new post so this topic doesn't get lost in the other posts.
 
You asked about peri-rectal Crohn's disease (CD).  Yes, I have it.  You will also hear it called peri-anal or perineal CD.  It is when you get abscesses that start on the rectum, and often you get a fistule that connects the abscess to the skin around the anus (to the perineum area or any other direction around the anus).  In my case, I don't have any of the other common CD symptoms (diarrhea, cramping, etc.).  I was low in vitamin D and a little low in B-12, which caused considerable fatigue.  But D and B-12 supplements solved that for the most part.
 
My doctors said that not many drugs are available that can heal fistulea.  Remicade and Humira are the best, and even the antibiotic flagyl can help.  I can't take any of these anymore, unfortunately.  I am on 6MP, but we really don't know if it is doing any good at all because I don't have any other CD symptoms to begin with which you would normally see improvement in if a drug was having a positive effect.  I haven't had an abscesses since last May so maybe it is helping.  I'm staying on 6MP just in case it is the reason!  I am doing quite well now!
 
I have had several big deep abscesses.  They were cut open, scraped out, and left to heal on their own.  They take several months to heal.  Sitz baths are great - several a day -- and I mean getting in a bathtub of ho***er rather then the kind that sits on top of the toilet.  I also use a hand-held shower sprayer to clean the wound after any bathroom use.  Patience is needed -- lots of it too becaseu these CD people heal more slowly than normal people.
 
Is this similar to what you are experiencing?
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/17/2009 1:31 PM (GMT -7)   
bump
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Anniegetyour gun
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 3/17/2009 4:41 PM (GMT -7)   
Hi thanks for replying.  Your condition sounds exactly like the one I am talking about.  However, I must come clean and admit I'm not the sufferer - my 25 year old son is.  I have just been trying every possible avenue to find out more about his condition when I found this site. 
He has had about 8 surgical procedures to "clean" and scrape out the fistulae abscesses in the rectum area.  He has had to have a colostomy (which was supposed to be temporary) BUT now looks unlikely to be reversed for quite some time.  THis last open wound is really, really large and taking a very long time to heal, and he actually goes to a WOund specialist for a daily dressing (the sitz baths are just not working this time.  He has only just been diagnosed with CD by a GI.  Previously he was just seeing a Colorectal surgeon, and all the tests for CD were always coming back negative.  Its taken about 2 years to actually diagnose CD.  The surgeon has actually advised that should he have to go in and cut again it may mean total removal of the rectum and permanent stoma.
My frustration is that when you tell anyone he has CD, everyone just says oh that's not a problem, just eat the correct food, but he does not have the cramps and D.  Been on Flagyl for ages - makes him very nauseous and then does not eat (Very thin for his height as it is).  Trying to find out costs of the Remicade (called Revelex in SA) and Humira and how does Medical Insurance (Aid) assist - if at all?   SOme of the people here seem to have been on these meds for years !  Hpw do they afford it?
 
-------------------------------------------------------------------
On 100mg Imuran for the past 3 weeks ; Cipro and Flagyl ; and supposed to be starting Revelex (remicade?) in 2 weeks time.  Suffered from fistulae abscesses for approximately 2 years.  Started as a "boil on his b-tt"/

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 3/17/2009 5:28 PM (GMT -7)   
I have also had more than 8 surgeries for abscesses. My last one, they found the fistula and put a seton in it. And I have not had another abscess since! I have been on remicade for 4 1/2 yrs. If I have to postpone my remicade I will get a fistula, and I did have one break through last Oct. without missing or being late with the remicade. So, unfortunately it isn't 100% but I can't imagine my life without it. My insurance pays 100% for it.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/17/2009 5:44 PM (GMT -7)   
Hi Annie!

I really feel for your son! Abscesses are very stressful and painful! I couldn't sit for months. The biggest wound was the size of a small ice cream scoop. I nearly fainted the first time I saw it. Flagyl really does surpress your appetite. I didn't feel nauseous if I took it with milk or cheese and bread. Make sure he eats protein for healing. I didn't want to eat -- just the thought of eating gave me an instant knot in my stomach. Many small meal will help.

I found this website has a good description of what we have. It has good links all over the page too.
http://emedicine.medscape.com/article/190234-overview

I am not sure where you are. Is "SA" South Africa?? I am in Washington, DC.

It sounds like he has been through so much. My doctor described my CD as "virulent". Not something I really wanted to have. It is calming down now that I am with a GI and colo-rectal surgeon who are experienced with CD. The good news is that the first couple of years are the hardest. You son's condition will slowly improve once you find the right medications and the abscesses heal. Life will get better! He will get better! Remicade has worked very well for a lot of people and I hope it works out for him too.

He is fortunate to have such a caring mother to support him! I literally would not have survived without my relatives who took care of me.

Take care!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Anniegetyour gun
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 3/18/2009 12:39 AM (GMT -7)   
 WOW - thanks so much I cannot tell you all how encouraging it is to know we are "not alone" with this problem.  Not that I wish anyone else to have it, but for so long now we have been thinking negative about doctors/GI etc thinking they did not know what they were doing?  Because every other person who has Crohns seems to have the intestinal/colon type - have not heard of another case like ours (peri-anal/perineum type) over here.
I would imagine my son's condition would also be described as "virulent" The colorectal surgeon (and yes I am in South Africa) has described his case as the worst he has ever seen. At present the joke is that there is more of his b-tt in the Pathologists office than on him!  Although we are at one of the top academic (teaching) hospitals in SA I have to sadly admit that the service conditions in SA are not what they should be.  THe actual Colorectal surgeon is supposed to be the best in Johannesburg - there are others but it is very difficult to find out who and where they work from.  Nursing quality over here can be rather distressing.  What is 6MP and how is it different from Remicade and Humira. We have been offered Remicade (REvelex here) but at a cost of approximately R25 000 per infusion X that by the $/Rand.  Is that the kind of costs where you guys are?  He needs to have an infusion every 8 weeks according to GI.  Our Medical Aid system here is also lacking.  Found out recently they may not cover him for these infusions (red tape etc). I will look at the other sites and see what else I can learn on this journey with him.  He is an incredibly wonderful young man with the nature of an angel and yet has to bear so much, and he does it with such incredible GRACE. 
Thanks once again to all similar sufferers out there, and may the peace of God be with all of us.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/18/2009 4:11 AM (GMT -7)   
Hi Annie,

Yes, we are a rare breed! There are two others who post here that only have peri-rectal CD. Fistulizing Crohn's, whether the fistulae form in the abdomin or in the rectum, is considered a serious form of the disease.

6MP (mercaptapurine) is an old drug that first was used for organ transplants and cancer.  Its related to Imuran.  It suppresses your immune system. The theory is that CD is an overactive immune system. Our immune system thinks it sees an enemy and attacks -- but it really is just attacking the body and in our case it attacks the rectum. Immunosuppressant drugs blind the immune system so it doesn't see fantom bad guys in your body. Drugs like Remicade and Humira are called "biologics". They block a cetain substance called a-TNF. The Moderators of this Forum have put together a description of the various drugs used in CD. Check it out under the "Crohn's Disease Resources" found at the top of the list of topics (its like another topic post). Also, check out the "Crohn's and Colitis Foundation of America" http://www.ccfa.org/ They have good information about drugs. Remicade here would have cost me $7,000 every 8 weeks if insurance wouldn't pay. My insurance did cover all but $400.

Is your son very fatigued? I was very tired all the time. The flagyl contributed to this, but also CD is an inflammatory disease and any inflammation in the body causes fatigue. I slowly got more energy as the drugs began to work. But I really got relief when I started on vitamin D therapy. My doctor did blood tests and found my vitamin D levels were quite low and B-12 was somewhat low. CD people have problems absorbing D and B-12. I strongly suggest getting his blood checked.

Otherwise, he just needs time to heal. It sound like you have the best medical care you can get where you are. This disease is frustrating for patients and doctors! Even good doctors! I suggest you search old posts for other discussions on fistulas and abcesses. Use the "Search site" bar in the middle/top of the main page.

God bless you and your son!


Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

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