Share Facebook
Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fistulas, Fissures and Abscesses Support Group



 
03-07-2013, 03:03 AM   #61
Lewis,s mum
Senior Member
 
Lewis,s mum's Avatar
 
Join Date: Sep 2012
Location: Manchester, United Kingdom

My Support Groups:
hey im with u all guys . my little boy . has been plagued with abscess.s and fistulas si ce the age of 2 hes has 3 drainages. fistula layed open twice. he. ant have a septon put i. cause the fistulas are blind . hes developed a new one but this time it has boken at the surface so we may be able to have a septon placed . hes been on infliximab since octobrer and aza since dec .we had to stop it end of jan as his neautrophils went to 0.03 but e gave it another go and bis levels have been 1.3 for 3 Weeks so hangi g in there . hes had to flares of an abscess since hes been on these drugs and a new fistula form we giving it til april to see if the meds are working then its back to the drawing board for us . has anyone use tracoliums biologics im going to ask at our nxt apt . keep the faith we find a cure .xz
__________________
lewis dx age 5

had first peri anal abcess age 2.
fought for his dx for 3 years
disease is located in . his peri anal, rectum colan and small bowel
meds todate are
infliximab 6 weekly
Azathioprine 50 mg daily
omeprazole 40 mg daily
buscopan 30 mg Daily
movicol 5 sachets at present a day
03-07-2013, 06:05 AM   #62
AlliRuns
Forum Monitor
 
AlliRuns's Avatar
 
Join Date: May 2012
Location: Ontario

My Support Groups:
hey im with u all guys . my little boy . has been plagued with abscess.s and fistulas si ce the age of 2 hes has 3 drainages. fistula layed open twice. he. ant have a septon put i. cause the fistulas are blind . hes developed a new one but this time it has boken at the surface so we may be able to have a septon placed . hes been on infliximab since octobrer and aza since dec .we had to stop it end of jan as his neautrophils went to 0.03 but e gave it another go and bis levels have been 1.3 for 3 Weeks so hangi g in there . hes had to flares of an abscess since hes been on these drugs and a new fistula form we giving it til april to see if the meds are working then its back to the drawing board for us . has anyone use tracoliums biologics im going to ask at our nxt apt . keep the faith we find a cure .xz
It's bad enough for an adult, but for a child, that is awful! how old is your son now?

Sorry haven't heard of tracoliums.
03-07-2013, 06:20 AM   #63
AlliRuns
Forum Monitor
 
AlliRuns's Avatar
 
Join Date: May 2012
Location: Ontario

My Support Groups:
Tacrolimus, just did a quick search, seems to be a newer drug, or new to Canada? (i could be wrong) maybe why I haven't heard of it. The US information I found said it was used for fistulizing Crohn's, but the Canadian information did not, maybe not approved here for Crohn's yet and why I haven't heard of it.
It does have side effects that are similar to symtoms of Crohn's, Diarrhea, constipation, so it may be counterproductive, but maybe the side effects don't occur in all patients.

On the plus side, it costs approx $30 a day, so cheaper than Remicade.
03-07-2013, 10:43 AM   #64
Sybil Vane
Forum Monitor
 
Sybil Vane's Avatar
 
Join Date: Nov 2011
Location: Virginia

My Support Groups:
I found that my fistula is less irritated after my Humira shot but slowly becomes more irritated, bleeding and draining right before my next shot. I went back from biweekly to weekly so I hope that eventually, I'll be able to get this thing healed. My GI started me on Imuran as well.
__________________
My real name is Christina and I write about my personal experiences fighting and surviving Crohn's disease on The Diarrhea Diaries at LivingSick.com.

If you're on Facebook, please join me for daily silliness, inspiration, and IBD in the news at http://www.facebook.com/TheCrohnsDiaries.



"Cats: Because sometimes they really help you."
03-07-2013, 01:43 PM   #65
simplelife
 
simplelife's Avatar
 
Join Date: Apr 2012
Location: edinburg, Texas

My Support Groups:
Does anyone have any tips on playing sports with a perianal fistula? I really want to start getting active but the drainage gets bothersome at times...
03-07-2013, 01:53 PM   #66
bigtruck
Senior Member
 
bigtruck's Avatar
 
Join Date: Feb 2009
Location: United Kingdom
Does anyone have any tips on playing sports with a perianal fistula? I really want to start getting active but the drainage gets bothersome at times...
Hi there, have you tried wearing fitted briefs boxers( just so nothing can fall out the legs) and folding a few 10cm by 10cm gauze swabs and putting them between your butt cheeks.
03-07-2013, 05:38 PM   #67
Bottomless mummy
Senior Member
 
Bottomless mummy's Avatar
 
Join Date: Jul 2012
Location: Adelaide, South Australia, Australia

My Support Groups:
I hoping for some advice and support I had a loop ileostomy in 2010 because my bottom was riddled with perianal abscesses and fistulas, also vagina so the surgery was done to try and settle this all down. (Setons were placed to start with but failed to help) i ended up having some of them removed which left me completely incontinent. As one went 3cm into my sphincter. While the loop was suppose to settle things down things only got worse. So last year in June I was left with no decision but to have a total proctocolectomy. When the removed my large bowel it was literally rooted strictures inflammation etc ! Ideas lucky I survived.

Fast forward to today and I'm still dealing with post surgical complications....perineal wound break down and a fistula going from the sinus to the vagina. Sorry for the opennes.

Just Tuesday I had my routeen fortnightly appointment with my surgeon and stomal therapist who are great by the way. And it seems all my complication add up to the fact there my be communication between the small bowel and vagina now. He done an eua a couple of weeks ago and 'found' something but didn't know what it was but with all my symptoms now vaginally bleeding he's certain there's another fistula.

I guess my concern is I thought after the major surgery I had last year would give me a little freedom but I guess not. I have severe advanced crohns and have so since the beginning.

I'm scared and don't know what to think. My crohns just keeps spreading and not giving me a break ! I had to have a part of my vagina removed in June last year so it worried me.

If it is a communication what do you think he would do ? More surgery I'm guessing, I'm already infliximab for the fistula I had vaginally post surgically.

Thankou for reading my long post I think I just needed to get it out as its been bothering me.
03-07-2013, 06:35 PM   #68
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
Oh Bottomless Mummy, you really have been through the mill :-( What happened with the fistula from the sinus to the vagina? Did they manage to heal it? Internal fistulae are notoriously difficult to heal on meds, but with vaginal involvement there are a few non-surgical options. There are quite a few people in this subforum who can advise about these.
__________________
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
03-07-2013, 08:16 PM   #69
Bottomless mummy
Senior Member
 
Bottomless mummy's Avatar
 
Join Date: Jul 2012
Location: Adelaide, South Australia, Australia

My Support Groups:
Thank you grumbletum, I tell you what I'm over it. When they done the eua the other week they decided to lay it open so perineal right through to the back of the vaginal skin sorry in advance for openness so at the moment I have an open wound which is what it has been since June last year when it broke down. Surgery isn't my friend when I had my proctocolectomy every wound broke down !! And because of the extent of damage with my bowl and vaginal wall they had to cut pretty much from my just bellow my breast plate right into my pelvis.....straight down 36cm ! Not what I was expect. To say the least. Their now trying to obviously heal the fistula which has been laid open with remicade....which doesn't seem to be doing to much. When I went in on tues for my app they had to burn the granulation back.....hyper granulation....and they'll have to no doubt do it again next fortnight !!
03-07-2013, 08:34 PM   #70
AlliRuns
Forum Monitor
 
AlliRuns's Avatar
 
Join Date: May 2012
Location: Ontario

My Support Groups:
Does anyone have any tips on playing sports with a perianal fistula? I really want to start getting active but the drainage gets bothersome at times...
I run and cycle, the only times my fistulas were bothersome during either were when they were new, and when I had setons. Sometimes when they swell up, running helps relieve the pressure.
03-08-2013, 01:07 PM   #71
rrehmus
 
rrehmus's Avatar
 
Join Date: Feb 2013
Location: Sacramento, ca

My Support Groups:
Hi all, just found this thread. Its nice to have found a place where there are others that are going through and understand the course of this disease. Dx crohns this past january at TI w/fistula bladder to TI and abdominal abscess at surface draining on its own. Currently on remicade, waiting to see if the fistula will close on its own. No pain just discomfort. Hopeing (like the rest of us) for the best. Time will tell
__________________
Dx crohns: 1/13 at TI
Fistula TI to bladder
No surgery (yet)
Current meds: remicade
03-08-2013, 01:13 PM   #72
aloe
 
Join Date: Jan 2013
Location: California

My Support Groups:
I run and cycle, the only times my fistulas were bothersome during either were when they were new, and when I had setons. Sometimes when they swell up, running helps relieve the pressure.
Wow, you ride a bike after going through that. That's inspiring. I used to do that, but can't imagine it now. I've been wondering if I'll ever be able to again.
03-08-2013, 01:56 PM   #73
xX_LittleMissValentine_Xx
Moderator
 
xX_LittleMissValentine_Xx's Avatar
 
Join Date: May 2009
Location: Reading, United Kingdom

My Support Groups:
These fistulas are so horrible! Its horrible to think how much damage they can cause to the rest of the body.
to everyone in this thread for everything we go through.
I know how much they get us down, but together we can support each other through the hard times. x x x
__________________
~Holly~
Diagnosed with CD March 08 at 17
Currently on:
Infliximab

Past:
Pentasa
Prednisolone
Azathioprine

My blog: http://hollysbloggyness.blogspot.com/
03-08-2013, 04:49 PM   #74
AlliRuns
Forum Monitor
 
AlliRuns's Avatar
 
Join Date: May 2012
Location: Ontario

My Support Groups:
Wow, you ride a bike after going through that. That's inspiring. I used to do that, but can't imagine it now. I've been wondering if I'll ever be able to again.
Yes, sometimes it hurts, but the pain goes numb after about 20 minutes.
03-09-2013, 10:24 PM   #75
DD2020
 
DD2020's Avatar
 
Join Date: May 2012
Location: Mumbai, India

My Support Groups:
Hi all,

I had a notorious colocutaneous fistula before my surgery in Aug 2012. Currently I am medicine free. However the fistula site on tummy skin never fully stopped discharging in last 6 months (something like 2 drops of puss a day). CT scan followed by CT enterography both showed the small intestine is stuck at the same site with the inside of the tummy wall and probable 'initial stage of enterocutaneous fistula formation'. As you can easily understand, during the next flare this can easily turn into a full flowing fistula.
__________________
DX UC with Colocutaneous fistula Feb 2011
Major Flare Mar 2012 - Aug 2012
Total Colectomy + Ileostomy Aug 2012
DX CD after surgery
Enterocutaneous fistula again, this time from small bowel
03-10-2013, 04:03 PM   #76
AlliRuns
Forum Monitor
 
AlliRuns's Avatar
 
Join Date: May 2012
Location: Ontario

My Support Groups:
Have now had 3 doses of Remicade and my fistulas are actually starting to feel better. They are still there, but I am seeing much improvement!
03-10-2013, 04:56 PM   #77
aloe
 
Join Date: Jan 2013
Location: California

My Support Groups:
Have now had 3 doses of Remicade and my fistulas are actually starting to feel better. They are still there, but I am seeing much improvement!
Congratulations! That's so great.

I was supposed to get my first Remicade infusion Monday, but got poison oak! They told me to postpone for at least a week and get a cortizone shot. I am hoping it's turned the corner by tomorrow, and that I won't need the shot, though I don't want to go against my doctor's orders. I think it's starting to get better, but still at the miserable and hideous stage.
03-11-2013, 02:14 AM   #78
DD2020
 
DD2020's Avatar
 
Join Date: May 2012
Location: Mumbai, India

My Support Groups:
Yesterday something urgent had come up, therefore I am completing today, I have a question to all of you.

Hi all,

I had a notorious colocutaneous fistula before my surgery in Aug 2012. Currently I am medicine free. However the fistula site on tummy skin never fully stopped discharging in last 6 months (something like 2 drops of puss a day). CT scan followed by CT enterography both showed the small intestine is stuck at the same site with the inside of the tummy wall and probable 'initial stage of enterocutaneous fistula formation'. As you can easily understand, during the next flare this can easily turn into a full flowing fistula.
One more surgery was scheduled (to remove rectal stump and mucus fistula+close the rear), but doctors are advising to postpone that and take atleast 3 doses of Remicade, and continue Remicade 'atleast for a year' after surgery also. If the fistula dries up before surgery, then 'we might try to separate the intestine from the tummy wall when we open you up'.

It seems Remicade is effective in closing fistulas. My question to all of you is, those of you who had fistulas and have tried Remicade, was there any partial improvement/ total closing? How long it has taken?

Though I am medicine free now, I have mild symptoms like uneasiness when I try to sleep/ hear lot of sounds in the abdomen after a meal. It is not an emergency, but should I go for Remicade hoping that it is likely to do more good than having adverse effects?
03-11-2013, 05:12 AM   #79
xX_LittleMissValentine_Xx
Moderator
 
xX_LittleMissValentine_Xx's Avatar
 
Join Date: May 2009
Location: Reading, United Kingdom

My Support Groups:
I would say go for the remicade.
I'm due to start it next week and I don't really have any symptoms atm. But I hate knowing the fistulas are there and I'm not doing anything to try and prevent them. They can cause to much damage and as you know lead to surgery. So its best to try and prevent that in any way you can in my opinion.
03-11-2013, 05:14 AM   #80
AlliRuns
Forum Monitor
 
AlliRuns's Avatar
 
Join Date: May 2012
Location: Ontario

My Support Groups:
Yesterday something urgent had come up, therefore I am completing today, I have a question to all of you.



One more surgery was scheduled (to remove rectal stump and mucus fistula+close the rear), but doctors are advising to postpone that and take atleast 3 doses of Remicade, and continue Remicade 'atleast for a year' after surgery also. If the fistula dries up before surgery, then 'we might try to separate the intestine from the tummy wall when we open you up'.

It seems Remicade is effective in closing fistulas. My question to all of you is, those of you who had fistulas and have tried Remicade, was there any partial improvement/ total closing? How long it has taken?

Though I am medicine free now, I have mild symptoms like uneasiness when I try to sleep/ hear lot of sounds in the abdomen after a meal. It is not an emergency, but should I go for Remicade hoping that it is likely to do more good than having adverse effects?
I am starting to notice improvement after three doses. Got a feeling it's going to take awhile for them to close though.
03-11-2013, 06:10 AM   #81
DD2020
 
DD2020's Avatar
 
Join Date: May 2012
Location: Mumbai, India

My Support Groups:
I would say go for the remicade.
I'm due to start it next week and I don't really have any symptoms atm. But I hate knowing the fistulas are there and I'm not doing anything to try and prevent them. They can cause to much damage and as you know lead to surgery. So its best to try and prevent that in any way you can in my opinion.
Thx littlemiss, I am thinking in the same direction. One of my worries initially was to use this weapon now and stop it after sometime and later on not being able to use it in time of real need, because it might not be effective for many 2nd time around as it seems.
03-12-2013, 09:49 AM   #82
Lewis,s mum
Senior Member
 
Lewis,s mum's Avatar
 
Join Date: Sep 2012
Location: Manchester, United Kingdom

My Support Groups:
hi alliruns lewis is now six hes having a rough time at the minute after his last infliximab hes been getting head aches and his lympnodes are swollen in his neck his stomach is hurting again i think we are going to be giving up infliximab soon and our doc may want to try something else god knows what but i.ll be damed if i let his disease take over his life i.ll fight tooth and nail to make sure we get the best care for him and the right treatment

. i make the kids laugh by saying i.ll kick crohns bum and start doing karate kicks . u gotta laugh and have fun or i think ud cry lol hope all your lovely ladies and gents are well and not having to many problems .xx
03-12-2013, 11:34 AM   #83
AlliRuns
Forum Monitor
 
AlliRuns's Avatar
 
Join Date: May 2012
Location: Ontario

My Support Groups:
hi alliruns lewis is now six hes having a rough time at the minute after his last infliximab hes been getting head aches and his lympnodes are swollen in his neck his stomach is hurting again i think we are going to be giving up infliximab soon and our doc may want to try something else god knows what but i.ll be damed if i let his disease take over his life i.ll fight tooth and nail to make sure we get the best care for him and the right treatment

. i make the kids laugh by saying i.ll kick crohns bum and start doing karate kicks . u gotta laugh and have fun or i think ud cry lol hope all your lovely ladies and gents are well and not having to many problems .xx
Poor little guy, bad enough having to deal with this as an adult, must be really rough on a kid. I agree on not letting it take over his life, it's important at any age, but especially for a child so young.
03-12-2013, 09:34 PM   #84
Misseireann
 
Join Date: Mar 2013

My Support Groups:
Hi All...

I'm really hoping someone will be able to give me some advice. I have had 3 fistulas for 2 years. I have a j-pouch, and crohn's disease. Original diagnosis was UC, blah, blah, blah. My surgeon doesn't want to do any other surgery save for the gricilis muscle repair flap surgery. He said that he is afraid any other treatment would be ineffective, and he wants to go for the "gold."

Is there anyone on here that has had this surgery? I am scheduled for the surgery at the end of June, and starting to get very nervous about what to expect. I am so afraid of pain, my first 3 surgeries were absolutely horrendous (colectomy, sepsis, and jpouch connection). I can't find very much information online.

Thanks so much for any advice you can throw back at me... I really appreciate your help.
03-13-2013, 04:16 PM   #85
myriahdawn
 
myriahdawn's Avatar
 
Join Date: May 2011
Location: Richmond, VA

My Support Groups:
I am supposed to see my doctor to get my seton removed tomorrow, but I am feeling not very optimistic. He said 2 weeks after being on Humira we can take the seton out and it may just heal up!!! Things were looking great until about 2 days ago... My drainage has been improving greatly, but then all of a sudden fistula seems to be bleeding more?!?!? Is this a part of the healing process, as in maybe a good sign?
__________________
- myriahdawn: 32/female

Crohn's: Diagnosed 4/2011 (Ileum & Colon)
Med: Humira
Vitamins: fish oil, vitamin D, B12 & a multi-vitamin
Surgeries: 2012-2013: Ano-rectal fistula repair & repair again & etc.... 7/10/14 - got a plug/flap combo!!!
03-13-2013, 06:43 PM   #86
Misseireann
 
Join Date: Mar 2013

My Support Groups:
I am supposed to see my doctor to get my seton removed tomorrow, but I am feeling not very optimistic. He said 2 weeks after being on Humira we can take the seton out and it may just heal up!!! Things were looking great until about 2 days ago... My drainage has been improving greatly, but then all of a sudden fistula seems to be bleeding more?!?!? Is this a part of the healing process, as in maybe a good sign?
Do you think that maybe your fistulas are irritated? Do they hurt? I'm not sure if bleeding is a problem when there is no pain. I would check with your doc, just to be sure. I have a jpouch and go to the bathroom often, so mine tend to get irritated more often.

Ill cross my fingers for you in hopes that your fistulas heal! Mine don't have setons in them anymore, but scar tissue is preventing them from closing.

Good luck!
03-13-2013, 09:57 PM   #87
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Hi Missiereann, I don't know anything about the surgery you are having so can't help you there but wanted to send you a hug anyway. Its scary when you know you have surgery coming up.
Re pain after surgery: Make sure when you see your anaesthetist (and surgeon for that matter) that you are worried about the pain after because last time you didn't have enough pain relief. They can then look back at your history and prescribe more pain relief this time. Don't get me wrong, its never painless but they need to give you enough pain relief so that you can get up and get moving as soon as possible after surgery.
Good luck with it all,
anna
__________________
Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
03-14-2013, 08:51 AM   #88
Misseireann
 
Join Date: Mar 2013

My Support Groups:
Thanks so much, Anna. I appreciate your kind words and support

Erin
03-16-2013, 09:47 PM   #89
Bamafan94
 
Bamafan94's Avatar
 
Join Date: Jan 2013
Location: Alabama

My Support Groups:
Hi!
Since I'm one of the lucky ones who has fistulizing Crohn's, I thought I'd join this support group. I had a rectal fistula develop in 2000. I went on Imuran and took 4 infusions of Remicade and it closed. By 2003, the skin around it started to to tear, and I was just tired of it being there. I still had pain from it after sitting for long periods of time. So in August of 2003, I had surgery to repair it. Haven't had any more problems with it.
I started having diarrhea pretty much every day starting in December of 2011. I'd been in remission since 2007. There were several things going on around the time the diarrhea started, (you wouldn't even believe the year I had that didn't have anything to do with my Crohn's) and it ended up being August before I went to my GI. After the usual torture chamber of procedures and tests, he told me I have 4 tiny fistulas connecting my small intestine to my colon and they were coming from a brand new patch of Crohn's a few inches from my old patch. So I've been on a cycle of Remicade. I'll take my forth infusion on Wednesday. If it hasn't worked, I'll probably be looking at surgery. Something I'd really prefer to avoid!

Current medications:
Imuran 150 mg
Lialda 2.4 gm
Levbid .375 mg twice a day
Multivitamin
03-17-2013, 10:21 AM   #90
Misseireann
 
Join Date: Mar 2013

My Support Groups:
I am so sorry to hear that Crohn's poked its tiny little head back into your life after 4 years of remission! Good luck to you... I really hope that the remicade works for you again this time around.
Reply

Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fistulas, Fissures and Abscesses Support Group
Thread Tools


All times are GMT -5. The time now is 11:05 PM.
Copyright 2006-2017 Crohnsforum.com