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04-28-2016, 09:20 PM   #1
mcate238
 
Join Date: Oct 2012
Location: Atlanta, Georgia

My Support Groups:
Perianal Crohns Diagnosis

Hi,

I'm a 25 yo female and have had crohns for 15 years. I have had 2 bowel ressections, blockage, perforation, etc....all the crohns basics. I had been in relative remission for 2 years when I went in for a routine colonoscopy on feb 23. The results came back as minimal inflammation in the same spots as usual, nothing in my anus. 3 weeks later I was admitted to ER with an anal abscess the size of a tangerine. It ended up turning into a fistula and I had a second surgery yesterday. My surgeon told me I now have perianal crohns. For all I know about crohns, I feel very uneducated and in the dark. Does perianal crohns just mean a propensity for future abscesses and fistulas in the future? Does the fact that this was able to happen mean humira is no longer working after 8 years? What can I expect from this new diagnosis? What is the likelihood abscesses and fistulas will happen again? Will I eventually have to have a proctectomy if the disease advances? How long do anal fistulas that are superficial involving no sphincter muscle take to heal? Are certain meds better for treating disease in this part of the body vs the colon and small intestine? This diagnosis was a shock to me post-surgery so I wasn't prepared to ask questions and would like to understand more before my post op appt in 2 weeks. I'd love any information, especially related to increased risk of rectal cancer or anything pregnancy related, as I hope to conceive in the next few years. Thank you very much for any insight. Would love to know what I can expect going forward considering I have advanced crohns for my age and nothing seems to be easy with my disease.

Pls forgive spelling--on my iPad
__________________
Current: Humira 1 every 10 days
Methotrexate 15mgs/week
Paxil 20 mgs/day
Entocort 9 mgs/day

Quit my job 8/23/13 to rest and heal

Previous: Prednisone, 6MP, Pentasa--can't remember the rest from when I was a kid.
04-29-2016, 01:29 AM   #2
tots
Senior Member
 
tots's Avatar
 
Join Date: Feb 2012
Location: Austin, Texas

My Support Groups:
I am sorry your having such a bad time!

I hope things clear up quickly.


Lauren
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
04-30-2016, 05:07 PM   #3
fernando3
 
Join Date: Nov 2015
I have Perianal Crohns for 3 years now and it is the most frustrating situation in the last four decades of Crohns for me.

The only thing you can do to reduce its effects are the Biologics, right now I am on Imuran and Remicade.

Other than that I keep the area superclean after each bowel movement and not miss a cleaning EVER.

An update on what I use:

After each bowel movement I use Cottonelle wet wipes, they are very gentle on the tissues

For a stronger wipe I also use Tucks but they contains Witch Hazel which may irritate the condition

After recommendations from this forum I also use Calmoseptine (buy at Amazon) which is stronger than Prax (over the counter anesthetic) but contains menthol which eventually irritates it.

If you are a woman, to avoid UTIs, wipe from front to back ALWAYS, I prefer Cotonelle (I am not a woman ! but I have heard this advice multiple times).
05-01-2016, 01:06 PM   #4
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
I am so sorry you are dealing with this . I am surprised they did not see anything when you had the colonoscopy, like the start of it? Maybe the whole colonoscopy irritated things too with all the diarrhea from the prep and that could have irritated stuff? Sounds horribly painful, I am so sorry. I am not diagnosed with Crohns but I have been having intestinal issues for the last 5 years now along with other odd health issues.

Did your Surgeon explain anything to you or what you should be doing at this point? Sorry your dealing with this, I hope it clam down soon and you do not have to deal with another abscess again.











Hi,

I'm a 25 yo female and have had crohns for 15 years. I have had 2 bowel ressections, blockage, perforation, etc....all the crohns basics. I had been in relative remission for 2 years when I went in for a routine colonoscopy on feb 23. The results came back as minimal inflammation in the same spots as usual, nothing in my anus. 3 weeks later I was admitted to ER with an anal abscess the size of a tangerine. It ended up turning into a fistula and I had a second surgery yesterday. My surgeon told me I now have perianal crohns. For all I know about crohns, I feel very uneducated and in the dark. Does perianal crohns just mean a propensity for future abscesses and fistulas in the future? Does the fact that this was able to happen mean humira is no longer working after 8 years? What can I expect from this new diagnosis? What is the likelihood abscesses and fistulas will happen again? Will I eventually have to have a proctectomy if the disease advances? How long do anal fistulas that are superficial involving no sphincter muscle take to heal? Are certain meds better for treating disease in this part of the body vs the colon and small intestine? This diagnosis was a shock to me post-surgery so I wasn't prepared to ask questions and would like to understand more before my post op appt in 2 weeks. I'd love any information, especially related to increased risk of rectal cancer or anything pregnancy related, as I hope to conceive in the next few years. Thank you very much for any insight. Would love to know what I can expect going forward considering I have advanced crohns for my age and nothing seems to be easy with my disease.

Pls forgive spelling--on my iPad
05-02-2016, 11:51 AM   #5
miss_luna
 
Join Date: May 2016

My Support Groups:
I've also had perianal Crohn's for three years now. I've had two fistulas within a <6month time-span.

With the second fistula, they inserted a seton. I started Remicade and had the seton removed a few months later. The seton made it difficult for me to exercise, which is important to me, and it made the area more difficult to clean. The doctors told me Remicade is best for healing fistulas. My brother is on Humira but he doesn't have perianal Crohn's like I do; he has another form that I can't recall at the moment.

The wound is essentially "closed" but I do get a very small amount of drainage. It only took a few weeks for my wounds to heal. The first time I took the gauze out I could have died, but it healed really quickly. As someone above mentioned, I use Cottonelle wipes with every BM.

I'm 31 and I asked my doctor about cancer-risk/pregnancy stuff. She said the Remicade has a small melanoma risk, however, I use sunblock often. She also said that Remicade isn't a teratogen. I work in pharmaceuticals and did a lot of research so I'm not very concerned about a risk to pregnancy.

Overall, I am doing well. I have my bad days and I do get hemorrhoids randomly, even when I am not constipated. When I had the fistulas I would pack the area with gauze because i was afraid of the drainage while at work or out in public. I still get nervous sometimes, but I have a very active life and I travel often. Wipes are everywhere in my life! Purses, bookbags, car, etc. But I'm happy and I don't get this thing get me down; you shouldn't either!
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