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Jenn
Regular Member


Date Joined Oct 2004
Total Posts : 29
   Posted 1/11/2009 5:00 PM (GMT -7)   
Hello all, I am new to these forums, but have been lurking for the last few days, soaking up information. So nice to have this available. Let me get the details out of the way first.

38 yo female, dx Crohn's '96, had resection of end of small intestine(10")/beginning of large intestine (4") due to fistula into bladder in '97, previously on prednisone, asacol, 6mp. No problems for the last 10 years, daily (non bloody) diarrhea, very rarely get constipated. Worse around my period, but for the most part, just something I have learned to live with. I had a job with no health insurance and sadly, stopped taking my 6mp/seeing my gastro because I could not afford it. Last saw her/on regular meds in 2005. All in all, have had a very easy time with my Crohn's compared to others I have read about. Not complaining! I do know where all the restrooms in town are though!

New problem has just come up. about a week before Christmas, I was on my period and thought that my pad was just placed wrong and was irritating my hind end. After the period was over and the pad was no longer there, the pain and irritation still was. I knew something was up, as I started to bleed a little and there was some pus like discharge, so I called my GP to get a look see. He performed a basic rectal and pretty much confirmed what I suspected, an abscess in my perineum. Set me on a course of Levaqin to get me through the holidays and set up a time to see a Colon-Rectal Surgeon on Jan. 9th. During this time, the abscess would swell, pop, drain, go down, be fine for a day, lather, rinse, repeat. Not terribly painful or debilitating, just kind of annoying and vaguely yucky. After seeing the CRS on Thursday and being examined in this office, he says it is a fistula and I will have to have surgery for it. Based on the fact that he can obviously only see so much in the office, he was vague on what he was going to do, but I think he's leaning toward a Seton, rather than a fistulotomy. But I guess I will find out what he did after I wake up tomorrow!

I have a great support system, I work for my parents in the family business, so time off is no problem. My spouse is awesome about all of this (oh, and I should also mention I'm a ***, so if I say wife, it may be confusing). I have her check things out for me back there, and let me know how she thinks it looks (easier for her to do then me get the mirror out!). Thankfully my wife's work considers us a "couple" so I now have good insurance, so this will make having things taken care of much easier.

Maybe it's just me, but up till this point, this whole fistula thing has been mildly annoying but not horrible. Has anyone else had one start just kind of eh? Not raging pain or oozing or anything. And I will be totally honest, I am the biggest wienie about pain, I mean, I really don't like pain, so this has been really nothing so far. I predict after tomorrow it's going to suck though, so I'm prepared for that. I will say that I am very thankful that my last 10 years have been so problem free, but that probably just means that horrible things are taking place inside me that have not gotten bad enough to come to light yet, sigh.

Just thought I would introduce myself so that in a few days when I'm freaking out I will be able to come here and get it off my chest and/or ask for advice.

Now I'm off to buy a sitz bath and groceries so I can cook ahead for the week since I'm probably not going to feel like doing anything tomorrow.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/11/2009 5:08 PM (GMT -7)   
Hi Jenn, glad you found us! I hope you keep posting and yes, please do vent if you need to. And ask questions!
I had a fistula last summer that just sort of was there, painful if it got anything on it, oozed puss which I checked regularly to clean and put antibiotic ointment on, and then it disappeared after a week of IV antibiotics when I had to get surgery.
I hear about so many of you having parts of your intestines removed though...my case is described as moderate to severe so I'm wondering when/if my time will come. How long did it take for you to heal after surgery??
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 20 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/11/2009 5:57 PM (GMT -7)   
Hello Jenn! Welcome to the forum!

I am so sorry you have to go through this! I've had a couple per-rectal abscesses and fistulas, and have two setons. The typical way to deal with a peri-rectal abscess is to cut it open, clean it out, and let it heal from the inside out. Depending on how big it is, the healing could take weeks. I am so glad you have people who support you!!

I'd like to share some of my experiences with you and tips for how I dealt with it all. Also, here are suggestions for your shopping list and what to do before you leave the hospital:
-- Buy several boxes of 4x4 guaze pads for later -- get the nurse to give you a whole package or two before you leave.
-- Buy several boxes of flushable wet wipes with no alcohol.
-- Crossword puzzles, magazines, books, etc. you can read while taking sitz baths. Get cheerful, uplifting ones to help keep your mood up.
-- Also get your doctor to write a script for large bottles of sterile saline (like 5+). After you clean the wound, pour saline on guaze before you pack the wound. Saline keeps the wound as sterile as you can get down there and promotes healing.
-- Also, my surgeon packed gauze up my rectum (stand procedure) but it was difficult to remove. Last time, I asked him to not do it and it was much better.

My first abscess surgery was for two huge, very deep ones. I had no idea what to expect, and when I removed the packing I nearly fainted from the look of it! Strangely, it didn't really hurt -- just looked sooo deep. The next time I was prepared and it wasn't so shocking. Not trying to make you nervous, just trying to prepare you so you will know what is typical and OK. I stayed on 2 percoset very 4 hours for several days just in case (I don't like pain!) and I was pleasantly surprised that there really was no discomfort. I tapered off slowly after that. Don't feel at all badly about taking pain meds! The best thing you can do is be quiet for a couple of weeks so it will heal. Moving around too much will delay healing. Consider this time as a vacation to catch up on your sleep, reading, friends, movies, etc. It will all be worth it to get rid of the infection!

You will need to clean the wound after every time you use the toilet. The best way is to get a hand-held shower head sprayer. Straddle the side of the tub and gently spray the wound and everything else clean. I very strongly recommend this!! I still do this to clean the setons. I rarely use toilet paper or wipes when I'm at home.

Be sure to take 4+ sitz baths a day -- not the kind you put on top of the toilet. Both my colo-rectal surgeon and GYN said there is nothing better than putting you butt in a tub in warm-hot water for 10-15 minutes. My docs say the hot water gets the blood flowing around the body and speeds healing.

One thing to mention, I was shocked that I didn't get a huge infection!! Think of the "stuff" down there that could get in the wound! But my docs said that the body knows what to do down in that area now, so it can handle it. Just do your part and shower it clean, use clean guaze, and you will be fine!

On a positive note. I felt "toxic" before each of my surgeries. But when I came to, I immediately felt much less toxic!!! I felt much better! My docs said that is not suprizing and that is a common comment from other patients. I do not regret the surgeries or setons at all!! This is the only way abscesses will heal. You can read others on this forum who have just had abscesses drained --- but they recur. Ick! opening it up and throughly cleaning it out is the way to get healing. Be gone foul infection!!!

I really want to offer you every encouragement! This really is going to be OK, and you will start to heal. Please, please let us know how you are doing and share all your expereinces. There are many here who have had this done! If you want to contact me directly, please email me (the right-hand email icon under my name).
 
And to answer one of your questions, I too had little discomfort when I first got the first abscess/fistula.  Too busy to deal with it and not knowing what it was, I let it go way, way too long.  I went to the doctor when I got a fever and had swelling all down there.  Cellulitis!!  It almost went septic and killed me!!

Take care!! Praying for you tomorrow!


Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.

Post Edited (FallColors) : 1/11/2009 6:01:03 PM (GMT-7)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/11/2009 5:57 PM (GMT -7)   
Hi Good luck tomorrow. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 1/11/2009 8:27 PM (GMT -7)   
Hi Welcome and good luck
Jo

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/12/2009 8:07 AM (GMT -7)   
Wanted to add my welcome and also wish you good luck with your appt today.

Hugs,
Gail *Nanners*
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"*

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/12/2009 8:42 AM (GMT -7)   
jen- I am so happy you have a pretty good support system. My DH has been a Godsend. He is there to hold my hand, to just be there when the tears and spasms of pain wrack my whole body (not a good night, last night) and yes, even look in places where I can't see to see if I REALLY need to see a doctor.(how many times can you all use the word see in one sentence?)

I hope you appts go well. I wish all the best for you too (short duration of illness, less pain, etc...I wish for all of us).

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/12/2009 5:59 PM (GMT -7)   
Hi Jenn!

How are you doing?? I hope the procedure went well and you are getting some rest. Please let us know how you are doing. Praying for you!!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 1/12/2009 10:59 PM (GMT -7)   
Good luck Jen and nice to meet you.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Crohns Dx'd: February 2008.
Pentasa (and much mental screaming)

Trying to hang in there until January so I'll have some insurance and can visit a rheumy, neuro, GI, primary, pain control, and possibly a shrink so I could stop crying and living in my own lil pity party. :-P


Jenn
Regular Member


Date Joined Oct 2004
Total Posts : 29
   Posted 1/13/2009 2:36 PM (GMT -7)   
Yay, I'm alive and feeling okay-ish. That went a lot better than I thought it would, not a whole lot of pain. My CRS put in a draining seton, but doesn't know how long I will have to have it. He told me I need to get a hold of my gastro and get put on some meds to take down the swelling, I'm assuming 6-mp probably? I've called my gastro several times, but no one is getting back to me, so I'm kind of annoyed. Fine, I stopped seeing you several years ago because I couldn't afford it (and nothing was happening to my body) so if you don't want me to be your patient anymore, at least tell me to find someone else! Kinda grumpy about that.

It looks like I've swallowed a red rubber band that's stuck. Hee! For some reason, in my head it was going to be blue, I don't know why I thought that. The wife thought I was going to have an actual tube sticking out. So we were both wrong. We're in the midwest (Nebraska) so we got hit with blizzard-like conditions on the way home, so everyone was leaving work early, which made for stop and go (lurchy) traffic; combine that with anesthesia and I was primed to barf when we got home. Which I did. And then I went to bed. But I did get up and soak in the tub later, much to my kittens delight, I got to become the Isle of Mom for him to climb on. And the tubing for the sitz bath is clearly a toy for cats to play with, right? BM's aren't painful, discharge is reasonable, I'm going back to work tomorrow. So, yay, this is kinda nice compared to my last hospital stay, 10 days of torture.

LMills: regarding how long it took to heal from the previous surgery? Surgery itself probably about a month, and getting back to "normal" maybe 2-3 months? But that's just me, so, hard to say. I kind of found out I had Crohn's by accident. I had always just put off my D and C problems as just me. I had actually gone to the doctor to ask about Fen-Phen (remember that stuff?) and they wouldn't prescribe it to me (thank god in hindsight) but when I went back about 6 months later for a different problem, I had lost 60 lbs, and they thought I was doing great on my diet. Which I wasn't on. So, they knew something was wrong internally (one doesn't just lose all that weight without something going on) and I was super super anemic. Anemic to the point that they were amazed I was able to function. So after a month of iron pills (never again!) and still anemic and losing weight, hey, she must be internally bleeding, and then the upper and lower series, and the barium enema, etc. ding, you have Crohn's. And then the drugs, and the scopes, and hey, you're peeing out sunflower seeds, you have a fistula into your bladder. So surgery and then, nothing. No problems until a month ago.

Thank you all for the welcomes and advice. I am amused that this forum self moderated nono and takes out the word that starts with L and means that I like women. My wife thought that was funny.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 1/13/2009 2:42 PM (GMT -7)   
Glad things went well for you Jenn, hopefully you get to see your Dr. soon for those maintenance drugs :) Good luck with that.
Jo

Jenn
Regular Member


Date Joined Oct 2004
Total Posts : 29
   Posted 1/13/2009 3:23 PM (GMT -7)   
Just found out that my old gastro no longer wants to see me, since I haven't been coming in for the last 3 years. Sorry, but I didn't have insurance and well, nothing was happening. So now, I'm on a quest to find a new gastro doc. Sigh, and the one I think I want isn't seeing anyone new until the end of February. Fun fun, not.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/13/2009 5:06 PM (GMT -7)   
Hi Jenn!

Glad you are doing so well!! And of course now you must take very frequent sitz baths in order to entertain your kitten!! "Isle of Mom" -- how cute!!

So they just put in a seton? They didn't open the abscess and clean it? Are you on antibiotics?
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


Jenn
Regular Member


Date Joined Oct 2004
Total Posts : 29
   Posted 1/13/2009 6:55 PM (GMT -7)   
I'll assume it was cleaned out, as far as I can tell, just a draining seton. I'm of Flagyl right now, but the CRS wants me to get with my (now non responsive) gastro and get on something to help clear it up. My guess is that the gastro will want me to go on 6-MP? Or maybe Asacol? Please god no Pred. But now that I have to find a new gastro, who knows what I will get on and when.

Oh yeah, he totally climbed out on my chest and got comfy. This soaking in water thing was utterly fascinating. Then the other one wanted to play with the tubes for the toilet sitz this afternoon, and the dogs just keep following me around all, why are we at home?
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