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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Ongoing Abcesses - Yep, yucky!



05-23-2010, 06:08 PM   #1
eclektick
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Ongoing Abcesses - Yep, yucky!

Okay folks, I have been a member on here since I was diagnosed nigh on 3 years ago now. Did the standard run up on everything (drugs) until I started Remicade 18 months ago. Tummy trouble has settled - YEAH!! Trade off has seemed to be my butt. I have had recurrent perianal abcesses for almost 2 years now (outside of rectum, have always developed into fistulas, or been from complications of fistula, had some on both sides). I have had 3 surgeries (lay-open, setons, etc) and am currently sitting on a lump that feels the size of Nebraska (not that I really know how big that state is as I am a proud Canuck, that being said 50% of americans don't either, I digress - and sorry for the dig to my Yankee brothers, lol). I have another apointment with my surgeon on Thursday and know I will be having yet another surgery soon (I am on a first name basis with him, as I should be seeing as how many times I have had... lets just leave it there) Okay, so I have done the sits baths, I have "massaged" the area, I have taken everything from Tylonol to T4's, percocet to, well, I would try pot, but I am too old to find it anymore! I have been diligent in cleaning, moisturizing, etc. I need to know if anyone has ANY suggestions as to how to help with these. Seriously, even ridiculous ideas like wrapping a gopher around my neck while naked, covered in honey and corn flakes screaming I am a monkey god. I will try it. The doctors just tell me there is nothing I can do and as you can tell I am sick of this. I have had to wear feminine hygine products in my shorts for 18 months, am not comfortable having sex with my wife and am in pain constantly. Anyone with any suggestions - shoot!

Sorry to rant, just need some help!
05-24-2010, 02:25 AM   #2
garygepner1
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If this helps I dont know but it seemed to work for me at the time when I had my parianal abcesses and believe me I have had a few. I have had CD since 2001.
Anyways, every time I had a bowel movement I would immediately take a shower or bath after handling my business on the toilet and wash the area. I am talking every bowel movent or even when my ass felt wet if you know what I mean. So for me that was about (depending on the day) 4 showers and 2 or 3 baths just in the day thats not counting 2 showers in the middle of the night, just to keep the area clean as possible. This is all while taking the meds the doctor prescribe, cypro, flagyl, and the famous prednisone. The combination seemed to work, and yes at some point for me they had to be popped in order to heal. The last one a few months ago started as a hard marble size knot and I bitched at the doctor about it and he just brushed it off till I myself sqweezed it and popped it myself at home then made an appointment and said see I told you so. (I hate it when they dont listen sometimes lol) He thought it was nothing because he could barely feel it but I knew it was there and because he wouldnt drain what he couldnt see I handled it at home, lol and ouch to. But once it was drained and I did what I explained in the beggining seemed to help with my healing.
Also, I live in California and we have medical marijauna dispensorys and if they do in your area I would suggest giving it a try. For me its a godsend, I can finally eat again. hope this helps, so long for now.

Sincerely and Respectfully, Gary
05-24-2010, 02:29 AM   #3
garygepner1
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Here is an interesting article.

http://online.wsj.com/article/SB1000...307540958644AB
05-24-2010, 08:42 AM   #4
eclektick
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Gary - thanks for the reply. My doctors are lethargic as all hell up here, they'll only give me the cipro/flagyl when I go in and beg for it, they "do not like prescibing uneeded antibiotics" and my "condition" should "come to a head" by itself. Seriously. The showering is a good one, I can give that a try, I am almost there anyways - the bath is the only relief I get so I am in there as much as I can get. We do beleieve we have dispensories here, but if I cannot get a script for antibiotics, I can only imagine what it is lile to get one for Mary. Are you using that as your main med? You mention cipro/flagyl/pred but I am wondering how well the green works? I am on Remicade and surgeries right now and would like to see what else is out there that does not have the side effects of the remi. I used to smoke in Highschool, maybe that is why my symptoms did not really start up till I was 19? Hmmm, food for thought I guess. Thanks again and any more suggestions.....
05-24-2010, 08:46 AM   #5
eclektick
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Great article btw - interesting to see where this goes...
05-25-2010, 02:09 PM   #6
garygepner1
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The marijauna helps but not in all areas. You have to smoke or get edibles and try them to find out what areas it helps for you. I smoke A LOT of pot and for me it seems to help with a lot of my CD issues, but that is not saying it will help for someone else. My self treatment plan for me is more pot less meds unless I need them. So far it has been pain meds and maryjane, except for starting humira on the first of this month. My meds as it stands right now is; oxcycontin, oxcycodone, omeprizole (generic Prilosec), asacol, and recently Humira along with a lot of pot smoking. Hope it works and as far as your doctor goes I would can his/her ass and find one with a little more compassion. I have went thru several GI's in the last few years just because of there non caring, hurry up, and get out of my office so I can see the next dollar bill in line. I dont like the 2 minute office visit to tell me something un-usefull or something I already know. But now I have good doctors who listen and if I have researched something new we will go over it and if it will work or have a chance at working then we right the script and try it.

Sincerely and Respectfully, Gary
05-25-2010, 08:18 PM   #7
eclektick
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Thanks for the info, I may have had some help and found an alternative. My GP is production line, My GI is pretty good, too shy to ask for that script as of yet. Know what you mean by the 2 minute visit, it sucks!
05-25-2010, 08:44 PM   #8
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I get these "abcesses' mostly around my pubic area.... one showed up about 12 years ago, and they just kept coming and coming, until now I am just about covered with them, from bellybutton right around to the tail bone. After many trips to emerg for IV antibiotics, one doctor on call finally said "This is rediculous" and sent to me to a surgeon (I had been to dermatologists in the past with very little results: "oh, you have plugged/infected sebaceous glands... here take this antibiotic"). So anyway, the surgeon checks me out and says "Fistulas" and consults with my interalist to do an exploratory and colostomy. Internalist says "Woah, waitaminut" and sends me for MRI, which shows no signs of fistulas. So internalist sends me BACK to a dermatologist (one I saw about 8 years ago) with FULL history, and dermatologist say "Its infected sebaceous glands" *Silver rolls her eyes* BUT instead of antibiotics, this guy puts me on Accutane. And like you, I am willing to try ANYTHING at this point!!

Soooo... have been on Accutane for just over 2 months now, and although there is no miracle yet, there does seem to be a bit of relief. These sores still drain (which is kind of nasty in and of itself) BUT I am not getting that huge "buildup" that causes so much pain....

(In the meantime, my internalist has consulted with another GI and they have decided it COULD be "microfistulas"... so I am off for another surgery consult in a week.... most of my disease is in the sigmoid area anyway, so even if it's not fistulas, they figure they will do a colostomy anyway, see if it puts the lower bowel disease to rest...).

Anywhos.... (sorry about that whole rant of stuff up there! LOL )... maybe ask one of your docs if Accutane might do anything for you for now.... (BTW I saw Dr Rao at the dermatology clinic at the UofA in Edmonton).

Good luck!
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05-25-2010, 11:26 PM   #9
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Sorry I don't have any advice, just wanted to offer my support and wish you better days ahead soon. *HUGS*
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05-30-2010, 09:06 PM   #10
eclektick
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Silvermoon - hols sh*t! No pun. You have been through it! My surgeon is going to talk to my GI and up my Remicade, do IV antibiotics before AND after sugery, and he is trying a new procedure this time. Thanks for the well wishes, I go in again the 8th, fingers crossed!
06-02-2010, 03:51 PM   #11
Silvermoon
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lol eclektick... yeah... kinda.....
The thing that always bothers me is: I am a nurse; I KNOW how the system works and how to get the answers and help I need, and if I can't figure it out, how the heck is anyone else supposed to???

Anywhos, in the meantime I have thought of something else that might give a BIT of relief... Polysporin has a cream that has a bit of lidocain in it (I think it's called Polysporin Pain - white tube with red label anyway)... it's not a lot of help, but it does offer a bit of relief at times, moreso with the "topical" pain rather than the "underneath the skin" pain...lol. If you try this, be sure to get CREAM not the OINTMENT, as the ointment will just plug things up more and cause more swelling.

Another piece of info that was given to me by a frined was maybe trying a clay poultice - which is basically just taking some wet clay and putting it on the affected area for 15 minutes to half hour (or longer if you have the time and patience), three or four times a day. The clay is supposed to have properties that draw out the "infection" and make things come to a head, so to speak, lol. I haven't actually tried it myself yet... I think I would try and find some " therapy" clay, maybe out of a naturalpath store or some such thing (which I have limited access to at the moment..lol) rather than the clay that is laying in my mudbog in the back 40!! LOL!

Just a couple of ideas. Hopefully more good news to come next week for you!
Cheers!
06-02-2010, 05:58 PM   #12
Entchen
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Aha, there *are* more Edmonton / N. Alberta people!

Second -- ouch. I have no advice Eclek, but please let me offer a hug for support. *squeeze*

Third -- there are an okay number of GPs accepting new patients right now. Not sure if that would be more work than it's worth, or if any are located in your part of the city, but unlike some places in the country, you have some (smallish) level of freedom to switch doctors in Edmonton right now. I understand the production line: tried the local walk-in clinics for a while and got nowhere. Who'd ever say that it's normal to throw up 5-20 times a day for two months? Nobody but a walk-in doctor...
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06-02-2010, 09:32 PM   #13
D Bergy
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If it were me, I would try Low Dose Naltrexone, as it has a chance of helping with the fistulas.

I know of one person that has used LDN for Hydradenitis Suppurativa, and it eliminated the boils and huge abscesses that come from the condition.

While that is pretty thin evidence for anything, the nature of how it works gives it a better shot at resolving the problem than average.

If you are really adventurous, you could try Miracle Mineral Solution, but even if it works, it is not getting to root of the problem. It would likely help heal them up, but it is not something you want to use all of the time. It is quite powerful, and experimental in nature. I think it is banned in Canada also. Luckily, I have a lot of it.

Other than that, all I have is the gopher thing.

Good Luck

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06-10-2010, 11:39 AM   #14
Lisa
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Just read through this - OUCH!...

As for the thought on using clay as a poultice.....check with a farm store/horse supply place - they generally carry poultices meant for animals - many are ok to use on people - there are also pads call 'Animal-lintex' (sp)....for pulling out abcesses etc.....ichthammol (smells, but works!) is another ointment type product.....

http://en.wikipedia.org/wiki/Ammonium_bituminosulfonate

http://www.equinedirect.net/Animalintex_p/f402.htm
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06-10-2010, 04:34 PM   #15
crohnsmomma
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Hi- I just joined and am already so glad I did! my son had many fistulas- well actually the same one kept returning. At first I had the same problem with Drs saying it was nothing, a pimple, a blocked gland, etc. - until it exploded like a volcano. We found that they just didn't go away until they were drained. He did have a surgery to put a 'stint' or stent or what have you there. He hasn't had a recurrance for over a year since that. I let him read the posts here and he was like - "Dude- other people get this too? Thought I was the only guy waddling around with a feminine product in my boxers and having to show Dr's by butt" I hadn't seen him smile in days until that
06-13-2010, 09:04 PM   #16
eclektick
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First things first - Crohnsmomma - tell your son he is seriously not alone, having this complication horrifies me and saying anything about it is very embarassing but knowing he at least now knows there are other guys out there dealing with this makes talking about this worthwhile. If he/you have any questions just shoot.

Sorry it has been awhile, had surgery again Tuesday. Been pretty painful until today. Doc has tied a loop through me an filled me with "surgi-plug???" on both sides. I think the funnest part of this is playing "feel what the doctor did" in the bath after it is done since they never tell me what they are going to do. It is like having a suprise in my butt crack everytime I come back from the hospital. I wanted to say thanks to all for your well wishes - it counts for something! I have started to see a naturopath who has some ideas to try so, while sceptical, will try them out and see what happens. This disease sucks but I gotta say the complications really take the cake. Best wishes!
06-13-2010, 09:07 PM   #17
eclektick
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PS Burgy et al, thanks for the suggestions and pharm refferals - I will look onto each, I may have some claymation in my near future. Lol!
06-14-2010, 07:50 AM   #18
Franko
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Hi Guys, i am also new to site.

I have a had same trouble with infections, canals opening up. ( 2 only)
1 has gone away with opening and drainage, packing , baths etc.

The other will not go away, opened up too many times over last 16 months to
remember. Tried all the anto-bio drugs on the list. Nothing is working.
My butt has a opening 3 inched long, 1 inch wide and 1.5 inches deep and in
the same trench is a seton band. ( not the cutting one)
Infection settleed in my butt check and had to be opened.

My GI does not want to see me anymore, now says Remicade is the only answer. He is no longer interested.

I am starting next week and just want to know if the Remicade will do the trick and clear this up.

My gi told me in 85 % of cases this will clear the trouble, i asked if not what do i do next ??

HUMMMM, not sure he siad , will look at it again,

The surgeon told me he will take out seton after 3 rd remicade treatment.

And so i wait.

txs, Franko
06-14-2010, 07:57 AM   #19
eclektick
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Dude, man, what the hell! Okay, been on the remi for 18 months, has not fixed the issue, probably going to up the dose right away to see if that will help, my doc agrees that in most cases the remi helps but doesn't know why it is not working in my case. My gut tells me these docs do not really get how these new biologicals are supposed to work and they only prescribe then hoping they do as the pharm companies tell them they will. The good news is most people react quickly once the remi is in their system so you should know fairly quickly if it is going to help. If you have any more questions let me know. Best wishes!!
06-14-2010, 07:59 AM   #20
Crohn's 35
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Hi Guys, i am also new to site.

I have a had same trouble with infections, canals opening up. ( 2 only)
1 has gone away with opening and drainage, packing , baths etc.

The other will not go away, opened up too many times over last 16 months to
remember. Tried all the anto-bio drugs on the list. Nothing is working.
My butt has a opening 3 inched long, 1 inch wide and 1.5 inches deep and in
the same trench is a seton band. ( not the cutting one)
Infection settleed in my butt check and had to be opened.

My GI does not want to see me anymore, now says Remicade is the only answer. He is no longer interested.

I am starting next week and just want to know if the Remicade will do the trick and clear this up.

My gi told me in 85 % of cases this will clear the trouble, i asked if not what do i do next ??

HUMMMM, not sure he siad , will look at it again,

The surgeon told me he will take out seton after 3 rd remicade treatment.

And so i wait.

txs, Franko

Hi Franko, I cant believe a Gi would say he didnt want to see you any more . All Gi's know there is no cure and you need follow ups indefinitely. Remicade can work, and I would try it, try not to get worried about the what ifs, concentrate on the now and it takes a few months for the Remicade to kick in. What doctor are you seeing in Toronto? Maybe you should seek out another if you can.
06-14-2010, 12:21 PM   #21
Silvermoon
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eclektik - LMAO at 'playing "feel what the doctor did"' !!

Franko - I was on Remi for about 5 years... it kept the fistulas at bay, but never really cleaned them up. This fall I am going for a loop colostomy. One of the main things this will do is keep stool out of the area were the fistula originates so hopefully they will heal up. The nice thing about a loop is it can be reversed at a later date. And the surgeon is pretty sure he can do the surgery laproscopically, so minimal intrusion and no big, long scar!

As for GI's that don't want to do anything, tis hard to deal with in this day of shortages of doctors, but keep persisting until you find one that will help you.

I wish you all the best.
06-16-2010, 10:37 AM   #22
Sue-2009
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OMG! I hope you get some relief you guys. There has to be some kind of relief somewhere! Unbelievable! Sue
06-16-2010, 11:20 AM   #23
DMS
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My 16 year old son had an abscess and fistulas, last August he started LDN and the SCD diet, and we also did hyperbaric oxygen therapy, his abscess - which had been giving him pain since March 09 completely burst and drained within 10 sessions. We've just had an MRI done May 2010 to take a look at what's going on, the abscess is gone, no signs of new ones, the original fistula (which we could see on his first MRI - July 09) is gone and the second fistula is almost gone. We will be doing another round of HBOT this summer to get rid of the last fisutula.
Just one more option for those of you that are suffering - if you haven't looked into HBOT for fistulas it's worth taking a look, it's pretty expensive and time consuming, but to get rid of the fistula - so worth it!


Here's a link for some info.
http://www.hbot4u.com/bowellisting.html
09-24-2010, 03:22 PM   #24
eclektick
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Wow, been awhile since I have been on - hurts to sit at the computer for a long time. I have trouble remembering being at 3 surgeries - up to 8 now (mostly drain and pack at the emerge). I have had a Seton (captialized as if it where a place/location) in place for 4 months that has a 1" knot that keeps getting pulled into the openeing when I wipe - let me sing praises of the O so happy fun time that results in! Another abcess formed directly under the location of the seton but what twice as large as that previous area of issue so they drained that. The wound where they did the incision has never healed, swells to the size of a golf ball and has granuloma's (?) all around it. I am now up to 7 vials of Remi every 4 weeks and 100 mg of Imuran a day. I have developed nauseua (could be from the Dilauded I now take for pain management), massive hearburn daily, muscle cramps, and am tired most of the time (from waking every time I turn over and rip the wound open or rub the inflammed inscison across the sand paper textured maxi pad I have to wear at all times.

Okay, seriously now - I need to know there are other people that are dealing with this ongoing like I am.
09-24-2010, 03:25 PM   #25
eclektick
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DMS - BTW, thanks for the post on Hyperbarics, interesting and maybe helpful - certianly somethign I will discuss with my GI.
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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Ongoing Abcesses - Yep, yucky!
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