About this Support Group

This is a support group for those of us who deal with Fistulas, Fissures and Abscesses.

Members

[email protected], 5cents, Abbynormal, abdriver2000, acrohn42, adoregirl6, Aegreen89, aimeey17, akk0309, al sleet, aleciabc09, AlliRuns, Allison M, Allisonxlynn, aloe, alychi24, al_crohnnie, Amaze, andrew112233, Andy K, Andysarb, Ang71, angiedawns, Anitamomy, Ann Morgan, annawato, Anne cochrane, AnnieYa, Aphrodite_x, AquaMama, around the corner, aruschmann, Avari.Mitchell, avierocks88, Bamafan94, barmybev, Barmybev66, Basmah, bjaycat1985, BlessingsK, bobisacrohny, BONZIE, Bottomless mummy, Brear, Brenren, brett985, bri850, BriBoo, Brigs, bumdeal87, bumprump, Bunkermariah, buttER, caidahlia, CamsMom3, cap13, carbuncle, Carlee, Carneysh, Carrie171087, carrollp, CassyVS, cateva, ChelleMarie, cheryl888, Chica, Chicago12, christina57, Claithom, cleuger, cmack, cody12, copeland, cosmic dave, Cozmo, Crohn's chic, Daisy G, DamnitCrohns, dave13, DavidXU, DD2020, deadlyviper69, dealing26, Deanne, debbie261, deepa555, Destiny, Devera, devin.moyer, dgg, Diver jude, DJW, dodie74, Dolphin, dragonballaf, dudah84, Dunbar, Echo, edentenley, ehCrohnie, Elkpad, elvie, erinjayee, Essieluv, exit4, ey218, FAYEZ ALMASRI, Fifi1983, fissure2, Fistulathens, FlashGordon, GABoy, Gainzie, gemmafer, georgiapeach, Gfryer1, girlygirl, Gmama, Grant, GreenwichUK, Grouchy, Grumbletum, GypsyLooo, g_sing, hannah-rose, Harper05, HartAttack, healingman, Heat92627, Heavenfaced, Help4me, Herndog, hetzbaby, hingrum, hkspence, Holly44, Ice, idlebrain, igrik1986, imogenxsutton, imok, Irish86, Jaano711, Jaded, JaimeM, Jaiyce, james's mum, jamesd, Jay Woodman, jbpharmd, jcashen87, JenLyn, JennyT, Jess_inToronto, jgtalanoa, Jison0612, Jo-b1, jodymccormick, joepreston607, JoeSoup, jonathankavner, Jordinary, Jordyn, josepilove, justbreathe8, justkeepswimming90, justwannafeelnormal, Jweiss, Kancer, Karen1, KarlieK, Kat123, kateybell21, kaydee, kel3333, kelly1, Kevinsplumbing, KFleshman, KWalker, Lady Organic, Lala57, lalalala, leezapeza, LemSat87, Lewis,s mum, Lexxi, lgpcarter, libbybett, lisadc1, little dove, livingthelife, Lizette, Ljfurn, lmr, lollyadverb, lourosa71, lservies, lulugirl, Lynda Lynda, Madelein, Makena's Mom, Malarkey, Mallory92, malmer7, MamaBearBec, mariam, Mark21485, matt82, Matthew24, Maxwelljax, mdd, Megeraldo3, megngeiger, Megs88, mel.k, MeLee38, Melissadempsey728, mellie, Mike001, Mike58, MikeinBklyn, millietipper90, Mindaugas1990, Mindy82, MinF, mish2575, Misseireann, missybee, MJD, Mohsin Abdul Aziz, Molly-Baby, Muddajo, Mustgetridoffistulas, MyDarling, myriahdawn, NancyP, napster, Nbca, Needananswer, Neko76, newbrite, newlydx'd, nicola30, nicolemarie, Nims22, NinaZoraida, nini_mini, nmendenhall, nmgonzo, Noelle224, nurse1510, Nyxie84, Oldcrohnie64, pain, PandaRabies, Pathophys, Patric Cawood, paul11, PaulsPain, phoenix23, pink&green, pipmom, Polar bear, POTTYTIME!, QueenFox, Quintonrich, Rachellea244, Racoon2000, ramorrison, readabook, readytoheal, realredf31, RebaP, Red89, redheadtn, Remismom, Rhea george, ronroush7, rottengut91, rrehmus, Rukaya89, Sailorluna, sam357, samanthab, samccoy416, sandcastle, Sarah42, Sarahann, Sascot, Saskia18, sawdust, Sazzle, SciFiGuy, scrapr, sfcharm, sfgirl, Silverbird, simplelife, slevan, smack116, smallfry, Snuggly71, Softyrose, Solidsam, soloman69, Sonya, SoOoO CoNfuSeD, Sophos, spacedog666, Sparkx, staloffn, Starlight, Starnett, stevereds, StinkyPete, Suehelb, Sunshinze, suszee, SuzRose, Sybil Vane, taraswede, tcclaims, Tedcin, Telkan, Tessa1107, The Mad Bagger, theOcean, thispenguinneedshelp, three crows, Tkirby, tootapi, Traveller, Tuff, tulip78, valb, valefan, velvetd, veroniquenl, Vintagevik, Walt, Welshman, wholesomejoe, woodcarver, Write2bheard, Wtf, Wyldflower, xeridea, xSierra, xX_LittleMissValentine_Xx, Yupitsme, zazasnana, zimmern, zxcvb, _aprillll

Excellent :-)

Can't say I'm happy to be part of this support group, but I'm happy to be part of it with you guys

Ditto to KWalker, but since fistulas have been the story of my life for the past 8 years, Guess I should join :-)

I know I don't post on here much, but I'm happy to join this group (or at least as happy as I can be, given what the group is for). I'm still pretty new to a Crohn's diagnosis, but fistulas have taken the early lead as my most bothersome manifestation of the disease.

Hearing you all loud and clear. My fistulas and abscesses got so bad that I have recently had my rectum and anus removed and have a permanent colostomy. So far all ok except for one abscess in my psoas region that keeps returning and is stopping the healing of my butt wound.

None of the medications worked and I had an anaphylactic reaction to infliximab( supposed to be best for fistulas) so I had no option as my CRS put it ' that is one wrecked rectum'. Have to say I don't miss being in tears with every BM and having up to 30 BM's a day.

I hate fistulising Crohns!!!

Jaano711 said:

Hearing you all loud and clear. My fistulas and abscesses got so bad that I have recently had my rectum and anus removed and have a permanent colostomy. So far all ok except for one abscess in my psoas region that keeps returning and is stopping the healing of my butt wound.

None of the medications worked and I had an anaphylactic reaction to infliximab( supposed to be best for fistulas) so I had no option as my CRS put it ' that is one wrecked rectum'. Have to say I don't miss being in tears with every BM and having up to 30 BM's a day.

I hate fistulising Crohns!!!

Is it as scary as it seems? To have a colostomy I mean? If Remicade doesn't work for me, I have a feeling that this will be the next step :-/

Also lol @ wrecked rectum... The term I mean, not having one, because that sucks, I know. Fistula humour.

I'm fortunate enough not to have had fistulas (touchwood) but Intestinal abscesses have ruled my life. Still have one under my liver even though I just had a resection and ileostomy to get rid of them. This one developed from the surgery - You just can't win with this disease!
So count me in - at least I'm with great company.

count me in. They are such evil things we need all the support we can get.

AlliRuns said:

Is it as scary as it seems? To have a colostomy I mean? If Remicade doesn't work for me, I have a feeling that this will be the next step :-/

While I don't have one, so obviously cannot comment from personal experience, I can comment from 2nd-hand experience. My father has lived with a permanent ileostomy for over 30 years, which he had as a last resort due to life-threatening amounts of blood loss from severe UC. In fact, he has now lived longer with it than without. It certainly did require a few lifestyle changes, but he lives a perfectly normal life, and most people that know him don't have any clue that he has it. When my relationship with a girlfriend (who is now my wife) got serious enough that I told her, she was quite surprised, since his life seems perfectly "normal" to an outside observer (indeed, even to him, since he's had it for so long).

I realize colostomies and ileostomies are not exactly the same thing, but my point is that we humans are incredibly adaptable, and many people live full and normal lives with them. My father's example means that, should my Crohn's ever reach a point where either of these would be considered necessary, I would be at peace with it.

Hello everybody. I just wanted to say that I had surgery on my fistula on January 21st and it hasnt returned yet.

Thats good cody!
I had surgery on my fistula on 3rd Jan. I just had a follow up appointment with my surgeon today and he said it looks good. Healing but not healed yet, and he is fairly confident it has fixed it.

cody12 said:

Hello everybody. I just wanted to say that I had surgery on my fistula on January 21st and it hasnt returned yet.

Wow, you're incredibly lucky!

The permanent ilieostomy is actually a relief. It is an awful to get your head around both physically and emotionally, but once I got to the point of having everything fail. I had seasons and fistulas splayed open, been on remicade that nearly killed me. The reaction saw me helicopter retrieved to a capital city and being in a coma - not a good thing for m kids and husband to go through!

Basically my rear end had sprouted so many fistulas it was more like a watering can (CRS description). I also had rectovaginal fistulas that were just down right depressing, and had started developing a labial abscess. As you can imagine both painful and embarrassing.

I had the surgery in August last year, and whilst the rear wound is being a little problematic, the Stoma itself has actually given me freedom and my life back. It may be somewhat different than before but it is much better. Everyday I accept the Stoma more. I am back at work, can actually go swimming, have an alcoholic beverage if I desire. I know longer scan for the toilet as soon as I enter a building. The only things I am yet to do is cycle as me rear wound is still being packed and draining.

So from here on in it is onwards and upwards. I now share my life with my new friend, my Stoma. She is lovingly revered to as Miss Piggy in our house.

Remember though, this is a worst case scenario and even so it is actually a huge relief.

Cheers
Jano

I'm new to support group but need to be in contact with people who understand about Crohn's. In a flare, can't take any biologics or Imuran, messed with bone marrow. Precnisone 45mg a day. Fistula, anyone heard of hyperbaric treatment for fistula's, my GI is referring me for it, non invasive oxygen therapy. I guess drug trials are next.

had a seton in now on remicade and happy to say they seem like they are closing .. i no longer have mouth sores and im starting to feel less tired.. there is light !

I had a surgically repaired one, so count me in.

I'm queen of fissures count me in.

Me too. Mother of 17 year old girl with small bowel,to small bowel fistula.

Include me also. Mother of Piper (15 yr old) with two perianal fistulas.

Me too. Son with a peri-anal fistula

If you have an abscess and fistula when first diagnosed, does this mean that the disease is already in a severe stage when there are no other symptoms?

Yes. GI says that this is a complication that usually happens down the road. When found first presentation, the most aggressive tx needed. My daughter has had numerous hospitalizations with TPN, steroids,antibiotics, Remicade, and finally took her to Vandy for Setons. Added Methotrxate recently. Great difficulty in getting her in remission. Life changing for a perfectly healthy young girl until this. This is my second daughter with this disease. Older daughter(31 yrs) getting small bowel resection and ileostomy March 13th at Vandy.She presented with typical belly pain and wt loss, and has fought a good battle for 15 yrs until now. Please pray for both of them.

I'm in. : (. I developed an abscess and fistula last August, and am still struggling with it. I've had 4 rounds of Cipro/Flagyl and Augmentin and one course of Prednizone, but it's still here. I had a seton placed about 3 weeks ago, and am going on Remicade in one week. Before last summer the Crohn's was only in my ileum (that I knew of), and I've been mostly in remission from symptoms for the last 15 years.

I'm depressed about the whole situation, and having to go on meds, and wanting this thing to heal.

It feels better not being alone though, so thanks for starting this support group.

I'm definitely joining this group! I'm open to any and all tips. I have an abscess and a fistula and am having a seton placed on the 15th. Not looking forward to it.

aloe said:

I'm in. : (. I developed an abscess and fistula last August, and am still struggling with it. I've had 4 rounds of Cipro/Flagyl and Augmentin and one course of Prednizone, but it's still here. I had a seton placed about 3 weeks ago, and am going on Remicade in one week. Before last summer the Crohn's was only in my ileum (that I knew of), and I've been mostly in remission from symptoms for the last 15 years.

I'm depressed about the whole situation, and having to go on meds, and wanting this thing to heal.

It feels better not being alone though, so thanks for starting this support group.

What's augmentin? Pred is pretty useless for fistulas, at least that's what my doc told me. I was on it for awhile, it did nothing for my fistulas.

Augmentin was a kind of antibiotic that is supposed to be taken after a course of Cipro and Flagyl if they don't work. That is sort of how it was explained to me at least. It didn't work either though.

Prednizone didn't help me either. I think they gave me that as more of an overall med to calm down the flare-up and inflammation. It didn't help with that or the fistula.

The antibiotic in Augmentin is Amoxicillin. If you are allergic to the penicillins like I am, Augmentin is on the no way list.

so the mri results came back. they said they are pretty sure it is crohns in the illieum. They said a fistula is starting to form in the illiuem. not really understanding what that means. My understanding is that means its leaking. but there is no abscess. they now put me on entocort, flagly again, and still taking pentasa. im going next friday to NYC for a Gi that my GI recommended to get a second opinion on it. They also want to start me on humira after a TB test is done. Im still new to this stuff. My dr said we need to hope an abscess does not form at this point. Can anyone explain some of this to me, the good the bad? is there anything i should eat specifically to help with the fistula or prevent an abscess? does an abscess always mean surgery? also as of last night the back of my throat feels funny, like theres something there touching it and i keep drinking and stuff it wont go away.