I want to rip out this seton..i would rather have an abscess w/I&D ...

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frogeleita
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Date Joined Jul 2009
Total Posts : 342
   Posted 8/23/2009 2:53 PM (GMT -7)   
I can't tolertate this seton..don't understand why i have throbbing pain..my doc said to take Cipro and Flagyl and call back in 5-7 days and then maybe i have more fluid in the rectum or some hemorroid thombrosis and its back to surgery for me..i want to rip it out..i can't function..i am having trouble doing normal things like taking care of my kids cause i am stuck on the toilet..i can barely hold my bowels these days..not sure why..i have constant pain...vicodin makes me depressed and suicidal..i feel like a burden to my family...i would rather have an abscess....and now i feel like i have the flu with flagyl it makes me achy and i feel like throwing up all the time..there has to be someone out there..who couldn't tolerate a seton..please share your story..because i feel alone right now...everyone seems to be okay with it..but me its been 10 days and the pain is worse everyday...
also..can i rip this out myself and does it need to be ripped out via the anus or the incision?

 


sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 8/23/2009 3:58 PM (GMT -7)   
I am so sorry to hear of all your problems! I hate setons too... In fact, I rarely keep them longer than the inital 3 months. The first seton I had was only a small string and it closed around the string and the fistula re-routed to a new location with a new abscess. So I had the second abscess drained and a new fistula connecting both locations. Thankfully (from my perspective) I entered a clinical trial which required NO setons. I had a good excuse to have it removed.

Then I went about a year and a half with an open fistula and no seton. In April I started getting fevers. So I was put on Cipro/Flagyl combo and got the seton put back in. I left it for 3 months then just had it removed a week ago.

The throbbing pain does get much better with time to heal. Many people find that they can live and hardly notice the seton. I would definitely not recommend trying to tear it out yourself... It doesn't seem that it could be that difficult, but I don't know how they snipped and pulled. Maybe someone else on here has a different opinion on that. But, my surgeon has gone with my decision to remove it each time.

The reasons that I didn't like my seton were: 1. so hard to keep clean, 2. sometimes it would catch on something and be uncomfortable (never painful once the inital healing happened).

For me Crohn's has taken so much confidence about "normal" activities. Not having control of one's bowels is so very emotionally difficult. My whole life has changed... I try hard to see the positive side of it all, because I know there is good to it. But, it's very trying, I started in on an antidepressant but quit because I was crying all the time on it (much worse than ever!!!). but, I would like to get in to see a new doc and see about a different antidepressant. I think I need some help sometimes dealing with the stress of this disease.

Hang in there, frogeleita... You are not alone. We all understand and you have all our support!
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


medchrt1
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Date Joined Sep 2005
Total Posts : 517
   Posted 8/23/2009 4:08 PM (GMT -7)   
10 days is enough to heal to the point it is not extruciating pain. It just might be an abscess that is trying to come to a head. Cant tell without seeing, has the nurse or doctor looked at it after the surgery? It is ok to sit in the tub to get the discharge out. Other than the seton does it feel like you have a knot like a spot filled with fluid? You want to take the antitbiotics to prevent infection. This is all to see if the rectum can be saved. But after a few days of baths you should have felt a little better so go in and see the doctor.

FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 8/23/2009 6:48 PM (GMT -7)   
I agree that it is time to see the doctor again. The seton should not be hurting much at all at this point. It may be more infection or inflammation. At first my doctors had me on and off flagyl and levaquin, but that put me on the infection roller coaster. I started to get better when I stayed on flagyl and levaquin (5 months). Unfortunately, please remember that the antibiotics can give you diahrea, and flagyl especially can make you highly emotional and anxious. Please try to get in as many sitz baths as you can, and be sure to use lots of guaze around the seton to pad it and catch drainage.

It sounds like you are going through a tough time now -- it is so hard to adjust to not being as capable and active as you once were. You will improve, but rectal abscesses and infections take a long time to resolve -- months even. It is unlikely that the seton itself is causing your problems. Setons don't cause diahrea for example. It is the infection and inflammation. I hate to be so plain but I know from my own experience how very difficult this is. I could not do a fraction of what I had done before. I felt so weak, dependent, and useless, and wondered if I would ever be self-sufficiant again (that was the flagyl talking!). I realized I was not going to get everything done each day, and I had to lean on others for a while. I had to give myself permission to do that and forgive myself for that. I needed to let myself have the time I needed to heal. I think this is especially difficult for women becasue we usually are the caregivers and people rely on us. Time for them to step up to the plate and help you this time.

Please call your doctor or nurse and get in to see them. Praying for strengh, patience, and swift healing for you!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/23/2009 7:15 PM (GMT -7)   
Thank you for your replys...i appreciate it..this is a very dark time for me..i have felt like i am worthless and what good am I...i have felt like i am different from everyone else and even ashamed of what is wrong with me..i cry just about everyday...and it seems that at home their is a lack of understanding...i am calling the doctor tomorrow..i am nervous to remove it myself even though the surgeon i talked to today said it is loose and not sutured to the rectum..but i remember my surgeon saying it was...and if he did that..and thats wrong..maybe thats the problem..eight years my fistula drained on its own..sure i had it opened twice surgically..and on the office many times..i never once was given any medication that should help other than Imuran...which i took for many years..i stopped taking it because i got infections for ..months...and lymph node infections and i had a cancer scare...and my hair really started to fall out..and i took Flagyl but stopped for the problems it caused me..such as horrible feeling of painful joints and diarrhea....diarrhea...like 7 times a day...so all those years i took only Pentasa..or Asacol...occasionally Prednisone...and i think because i left the inflammation..there..it stayed open..because it couldn't heal...my Crohns story is different then others...my Crohns is my peri-rectal disease- my intestines being my colon and the illeum is my colitis..i had the "spastic colon" problem...but this suture is too much for me..its ruining my life..i am in too much pain to go anywhere...i don't work anymore..i never finished school...i am a stay at home mom of two..and being stuck in the bathroom when the baby is wet and crying for food...for hours...is something that has happened lately..i don't know why i can't control my bowels...it doesn't make sense...to me..but i understand the whole antibiotic thing...i just wish i could go back to the way things were..can't i just opt of incision and drainage when i have an abscess each time? Because my seton is not a string..its not small..its not "only uncomfortable" like my surgeon said..in fact...he told me he wouldn't have to cut me..and then he cut me five inches starting from the rectum going up...nothing is as i thought it would be...on top of that...i can't live a normal relationship with my husband..they told me this type of seton stays in for only 6 weeks..but i am up to almost two and i can barely handle it..every time i move..i feel it...and mine is loose so it moves alot and i have pain..
I don't have a choice..there is no one to help me clean, take care of the kids, do the laundry, cook, balance the checkbook, take out the trash,check the mail, run the errands, go grocery shopping, pack the lunches, and so on...my husband is at work..and i do all of these things...its my job..because i am the one who is at home...i want to have fun with my six year old..i want to be able to leave the house..she didn't ask for this...i am glad to hear that some out there couldn't deal...i can't even put guaze..that is too painful...this is crazy...

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/23/2009 7:19 PM (GMT -7)   
I don't know..if its another infection..but i can say..before i took antibiotics the smell was horrible..so much i wanted to throw up..and it didn't start off like that...and i complained..and then i got antibiotics...so i did feel like something was wrong...they kept saying do you have a fever..well it takes alot for me to have a fever..i had an abscess..this one for three weeks..no pain..just slightly...no fever!

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/23/2009 7:38 PM (GMT -7)   
Okay..i now i am going on but i have to vent..guess what..my initial complaint to my GI was it was draining to much..wiping the fistula was like wiping my bum..same thing almost..so i told my GI its draining too much..he said take Cipro it helps these things to "heal up a bit" oh okay..i took it ..it closed and i got an abscess...now..here i am today

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/24/2009 6:59 AM (GMT -7)   
Well..i made an app for Wed..and i am going to tell him..take this thing out of me please..i can't stand it..yesterday i had so much pain..that i was clumsy fell..bruised my legs arms and my foot. I love my fistula and it was in the cards for me to have one..to save me from my abscess and i will leave it that way for life. I will be 90 with incision and drainage..thats just how its going to be. I won't take Imuran or Flagyl, or chemotherapy drugs that make all your hair fall out, or Remicade, nor will i inject myself with Humira. I will take nothing for my fistula..and leave the inflammation..and it will stay open..it did for eight years ...until i took one cycle of Cipro...god meant for me to have a fistula..thats the way it is!

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/24/2009 5:06 PM (GMT -7)   
I am worrying about you Frogeleita. Really make sure your doctor sees and understands exactly where it hurts. Bring a mirror and show him -- don't leave until he really examines it and understands. But don't you remove the seton yourself!! Please don't do that. Clearly an abscess caused your old fistula, and the fistula plugged and abscessed again. So while you say it was working for you, it didn't last. It is the infection you are battling right now, and the incision and seton are just tools to get rid it. Focus on getting to the bottom of the infection and pain, and please believe that it will get better!!

I rarely had much of a fever at all, even with huge cellulitis infection. But wow did it hurt when it got really bad. It may be that they need to admit you to the hospital for a couple days of IV antibiotics. Whatever it takes to get you well!

I strongly recommend you ask a family member or friend to stay with you. This is so very hard to do alone, and honestly, it sounds like you need the emotional support right now. Please lean on others now. Someday they will need you too!

Please take care of youself.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


patientspiders
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Date Joined Jul 2005
Total Posts : 733
   Posted 8/24/2009 6:10 PM (GMT -7)   
You're not alone, Frog! I had a drain that almost put me over the edge, but it does get better!

I had 3 different kinds of setons in and around and through my rectum/anus... the tube kind, the string kind, and the "rubber band"...

And the rubber band one hurt worse and worse for over a month. I'm convinced that it was somehow routed next to a nerve or something, because it WAS ridiculous, and the previous posters are right when they say that YOU SHOULD NOT be in so much pain this far after insertion. I spent a month on my belly losing my mind before I got any relief.

My colorectal surgeon did not believe the level of pain, even though I had previous drains to base my "pain scale" on.

I'm glad you're going in Wednesday.

When I was fighting with the rubberband one, the flagyl and other nonsense they had me on... your post gave me a wicked flashback, and I'm so sorry that you're going through this, but it does get better! I promise! And then you look back on these days and feel like She-RA because there are not words for what you're going through.

FallColors is right... don't leave that doc's office until you're satisfied. Period. You need your life back.
In the mean time... hot baths? re arrange the furniture so that you don't have to sit on your butt to relax? And maybe ask for a different pain med... don't try to take on all that without anything just because you don't get along with Vicodin. These are not the days to "rough it"! Tramadol or Ultram worked well for my seton/drainage pain sometimes.

Sending good thoughts your way.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/24/2009 6:58 PM (GMT -7)   
thank you guys so much..you are keeping me sane..i promise i won't remove it myself..i am too scared to do it..but i need to be firm when i go in on Wed...its been a week or so now...and i haven't heard if i am "approved" by my insurance company to take Remicade...and honestly i am a little afraid to even take it..its a "big" medicine..if you know what i mean...so that Humira and 6mp are the only ones i haven't taken...its a weird pain..its like on one side and its starts with now with going to the bathroom..but i have colitis..so i go like 4 or 5 times..thats the norm for me..and the pain just continues..now i can only take ibuprofen because i couldn't urinate on Percoset...Vicodin..made me depressed weepy and i felt suicidal..i felt like taking all the sleeping meds in the house..but i know..i don't want to die...i love my husband and my kids...and i talked to my gramma about how i feel...so she listened to me...people around here know i am falling apart...see these pain meds are kicking up my depression..i have been diagnosed in the past as being bi-polar..but didn't quite agree with it so i don't take meds..though i tried some...they made me feel more suicidal and hyper and depressed...at the same time..i am not going to spend my life..all drugged up..when i can pin point things in my life..that make me upset..its like..it makes sense right..i know exactly why i am sad..or crying..
This colon rectal surgeon keeps telling me..oh maybe he can get rid of it..but the MRI i had showed that it was quite far into the muscle...prior..and many people told me..surgery is not an option...so why does he think it is? My mom asked me..what is the point of this thing and i said to drain it..but its making the inflammation worse! Instead of better...for some reason...i just can't deal with this..be it...anxiety..i am not sure...i just can't function with this thing..i just don't want it..its just not it for me...my seton is large..its a tube...the only part that is the size of a rubber band..is the part that is in the fistula..so i am not sure which one i have but it feels and looks more like the size of a straw...and it goes in the anus and around comes around the fistula and loops around its its tied..its really strange..and the sutures are really tight so its hard to clean..so its sticking out and poking me in the incision and its poking me towards the anus..really uncomfortable..and  i just don't know..but i appreciate any replys i am getting..i am thankful for nice people online who listen to me vent and share ideas...you are a blessing! thanks again

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/24/2009 7:00 PM (GMT -7)   
its interesting the nerve pain..because on the side where it hurts..i am getting a shooting nerve pain there...

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/24/2009 9:40 PM (GMT -7)   
When I had a contraption like that I found that the easiest thing to do after a series of bowel movements was to squat (the hardest part for me) so that I could just wash my butt under the tub faucet. I'd just drop everything from my waist down and run the water gently, warm, and clean the area. I also had trouble with the stupid tube-thingy blocking the drainage, so sometimes I had to do this weird leg lifting thing while holding the tube... but when I did tons of drainage would run out (gross, sorry) but I would feel so much better. I hope you're not in extra pain because it's blocked off like that at times, but it might be worth a wiggle if you're already scrutinizing the area later.

Butt washes and hot baths... and sleeping on my belly. That's what got me through.

Sending more good thoughts your way.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 8/24/2009 10:34 PM (GMT -7)   

Hi Frogelita, I just want you to know I understand how horrible it all is. When I had my tube drain inserted it was the result of the seton not working properly, there was excess sepsis, so I was intense pain, and the pain went on for months. My seton recovery was not as everyone says (10 days) – it was months before I was anywhere near pain free. I remember when my ‘tube’ was 1st put in, I couldn’t bear the thought of it being there, and just wanted to know when it was coming out!! But it will do its job, its just taking its darn time, which is frustrating as all hell, I know ….. I was working while this all happened, at a new job and so anxious to make a good impression…. But trust me, this is just a moment in time and things will get better before you know it, the pain will get better, we just take so long to heal down there.

 

One thing I did notice and which rings a bell with your story is the pain meds. I finally got some decent, prescription meds, and straight after I took them I’d feel great, but the next day if I didn’t take them I’d have a ‘come down’ and be so weepy and depressed and – as you said – even suicidal. It was scary. I decided in my case to stop taking the pain meds because the way they were affecting my mental condition was too scary for words. My uncle died of suicide and I have been depressed in the past and I could tell they were affecting me.

 

I know how awkward the stitches are and how frustrating it is to have this foreign thing in your butt, poking you, draining, hurting, not letting you sit properly….. Its awful. Just try to think that it will help the abscess to heal and it is well worth it in the end. Please believe me. My tube drain has been in for nearly 3 months now and will come out when I have my 1st remicade infusion. I have become quite used to it being there now (even though I try to avoid looking at it because I get depressed, there’s an ever-expanding fistula hole there too and it scares me). The stitches didn’t take very long to dissolve (just a couple of weeks) and once they’re gone it’s a lot more comfortable because it doesn’t ‘pull’ your poor skin so badly, but still manages to stay in place.


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/25/2009 8:28 AM (GMT -7)   
Thats what i am waiting for...my approval on Remicade..i know the pain that i have is from inflammation..i am sure of it..this is the same pain i feel when i have had horrible diarrhea..i feel like i am bothering my doctor..i have to call so much to get anything done...he promised the end of the day to send the paperwork to get me started on Remicade and he hasn't done it..he has sent nothing...and its been over a week..so now i am annoyed..i have an app tomorrow..but i feel like calling them today..i know i need to be strong..and put my foot down..and not persuade me to do what they want me to do.....phoebe what stitches do you mean? I just have this tube..do they have to stitch me after?
ps i think this inflammation is so bad because i have never taken not one med that helped the inflammation in that area..so its like almost 9 years of that area being inflammed..its really in need of medications!

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 8/25/2009 10:29 AM (GMT -7)   
Don't feel badly about calling your doctor. Remember you are paying for this service!!!! He needs to get cracking because it can take a couple of weeks or more to get the OK for remicade. Remi is expensive to the insurance companies so they want to ensure you really do need it. I don't blame them because I was told each infusion is about $7,000.

As for stitches, some doctors try to stitch closed an incision afrter an abscess. It seems like a right thing to do rather than have an open incision, but my doctors say the best way is to leave it un-stitched. It is less likely for infection to get trapped inside if it is open. Also, some put a few stitches in to hold drain tubes in place. I haven't had a drain tube (just setons) but I think Phoebe has (mushroom drain). I think they are used for very deep abscesses (and tubes can be problematic because infection can get up the tube). I hope she clarifies what she has.

I think you are right about the inflammation. Once the body's inflammatory response to an injury and/or infection gets going, it can be very difficult to get it under control. I know this first hand too because I also waited way too long to get my first abscess dealt with. The whole area was so swollen and infected. Being swollen reduces blood flow, which means the body can't get to the infection, so the infection increases -- a vicious circle!! But a year later when I got another abscess, I got it dealt with right away, and I didn't have any of that inflammation. So live and learn!!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/25/2009 12:55 PM (GMT -7)   
Hi Fallcolors..thanks for replying..its so confusing itsn't it? All these drains, setons, who knows who has what..all i know is mine is red..and it has black sutures holding it in place and it goes around and connects...with sharp sutures too that poke me..and annoy me..like getting in and out of a car..because life must go on even with a seton..i can't stop..because i have an abscess..i won't feel bad about calling him..you are right...we pay like hundreds of dollars a month plus copays...just to have insurance..plus gas, parking, more copays for medicine, plus taking the time off from work to go to the doctor...its certainly not free....wondering whether or not i have some sutures somewhere are the exact reason i don't pull this thing out myself..because i might be brave..but i am not that brave.. inflammation is the worst..it really hurts alot...and the only way i can tolerate this seton..is with major medication..and its too bad he didn't send the info as he promised..to me..because i might have already had an app and on my way to recovery...

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 8/25/2009 2:32 PM (GMT -7)   
The remi started to help me so hopefully it will help you too!! I can't use it (allergic), but many do great on it! Can you use guaze to cushion the seton's pointy parts? I would be torn to shreds if I didn't use guaze all the time -- even in the pool! I use very soft guaze and it works great. And I found a cheaper source for it on the web. I hope your appointment goes great tomorrow! Give him heck!! Look him in the eye and say "you are working for me, so listen up!"
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 8/25/2009 3:39 PM (GMT -7)   

Hery frogerlita I know it’s not what you want to hear right now because you are waiting a few weeks for Remicade, but you are lucky it only takes that long!!! I have had to wait over three months just to apply!! Over here in Australia it is very rare and you have to apply via the pharmaceutical benefits scheme, so even though I had a deep abscess, and severe Crohn’s, I have had to wait twelve weeks and then I have to re-apply every 3 months!! It has been tough. At least you didn’t have to wait that long….. I am still waiting, three months on. And I still have a seton and a mushroom drain in my butt. I’ve been told things won’t really heal up until I have the remicade so that was hard news to take. My fistula is still getting bigger by the day even though the seton is in there.

 

I did have a seton initially, and it was bright red – actually I had two, but one was there to lay the area open and came out later. I still have one fire-engine red seton, but I also had to have a mushroom drain inserted because it was a deep abscess which kept on growing even after my first setons were put in and I had more and more pain following surgery. I’ve also gone about 4 years with little or no medication, so I am worried about the area too. My advice would be try not to freak out, I know it’s hard because I’ve been there (well, I’m still there) – waiting etc….. But at least it’s a matter of weeks for you and not months! Hopefully you get your answers soon….. and the connection between our nervous systems and our stomachs is very strong…. Stress will only exacerbate things…. try to just remember this is momentary and you don’t have a long time to wait. I remember crying and feeling hopeless thinking three months is soooo long! You just have to adjust…. And you will….. this will make you so much stronger, trust me.

 

I hope you’re having a better day today wink


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/25/2009 4:30 PM (GMT -7)   
thanks phoebe..i see what your saying..i think its horrible you must wait so long...no one has even put in the paperwork yet...because my doctor didn't send his "suggestion" to my GI to get the process started...so i am no where even close...nothing at all has been filed...today is a bit better..but its definitely inflammation..that is causing the prob...its such a tough thing..these fistula's...i think its horrible that anyone has to wait..i find it even more horrible to find out that insurance isn't paying on this 100% for some people and they must take out grants or put money down....its just not right...that ones health is in someone else's hands...my abscess cavity itself is deep also..it goes from my rectum all the way around the buttocks from left to right....my first abscess ever was the size of a grapefruit..and i was told i was about a week away from being paralyzed because it was moving up towards my spine...so pretty much i have a cavity still inside of me ..that is pretty much my entire bottom! take care

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 8/25/2009 5:07 PM (GMT -7)   

Oh you poor thing that sound so awful!! My cavity was deep too which I think resulted in the excess sepsis which didn’t drain properly…. I remember seeing the hole for the first time and being so scared!

That’s freaky – I didn’t even think of the possibility of it reaching your spine, but I guess it makes sense…. My fistula is located right smack bang in the middle near my tailbone. I had no idea when my abscess first appeared just how bad they could get, it left it for way too long, but then again I was with a terrible gastro who refused to let me see a surgeon….

 

I don’t have any paper work ‘in the works’ yet either….. they say its not worth applying yet because it will just get knocked back, we have to wait at least three months before applying, and then when we do apply, it will be a few weeks before my first infusion (if my application is successful). So the 12 weeks is up at the start of September, I think I still have another month of tubey life and waiting to go…..not a nice thought when my fistula hole is growing.

 

          So Frogelita is this your second abscess? Your fist abscess sounds like hell – so big!! I also get mad when I hear about dr’s asking if you have a fever, like that is the only proof that you have sepsis….. its not!! The abscess closes infection off so of course you’re not always going to have a fever! Throughout all my abscess hell I didn’t have fevers, but for the yrs before it came to a head I did….. I think that’s what it must have been. Just because you don’t have a fever doesn’t mean there’s not left over sepsis, I had left over infection and no fever…. If it hurts and is sensitive to touch, there’s something wrong….. Unless you are just still healing. I was sore while I healed. I hope things get better for you, it’s such an awful thing to go through….

 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/25/2009 6:21 PM (GMT -7)   
just wait until our health care is in the government's hands, and then we will be waiting 12 weeks like phoebe and going through all the hassle...if we are even deemed worthy to receive it at all.

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/26/2009 11:01 AM (GMT -7)   
Met with my doctor..said he did fax his recommendation..and if it hasn't..he is checking with his staff there...he is taking me back to surgery...he will put in a silk thread...hooray...much smaller..i can tolerate this so much better...also he said that he was able to shorten my fistula..which i had not understood...so in theory its smaller...amen!

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin


bluemom51
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 8/30/2009 9:51 PM (GMT -7)   
Frogeleita, I am so sorry for all that you have gone through.  I hope they are able to make you more comfortable.  I will be saying a prayer for you tonight.

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/30/2009 10:23 PM (GMT -7)   
thank you bluemom..you are sweet and i appreciate anyone who is willing to pray or answer my questions..this has been a nightmare...and if things don't improve..i might not be able to deal with this seton..and i am trying so hard to deal with it..

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa prednisone cipro flagyl vicodin Ultra

waiting on Remicade

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