Abscesses!!!

[kendallblue]

I was diagnosed about three years back after an abscess became a fistula and had to be repaired surgically. After that I began remicade infusions, and seemed to have some luck. In January I had a flareup and ended up leaving my teaching position. I have been denied disability, and of course, several weeks later ended up in the hospital with another abscess on IV antibiotics, and ended my stay with another surgery. Still not having found a job in this market, I have not paid the bills from my last flareup, and have begun to have a pain in the left of my rectum and into my left leg over the past week. I am on Cipro, but don't seem to see any improvement. My disease is located predominantly in the lowest part of the colon and rectum. I am wondering if anyone else has had a similar experience or might have any suggestions. I am terrified to see my specialist, when I still have so many outstanding hospital bills... :confused2:

 

[Cookie]

Hi Kendall,

I feel for you...I really do. If you search the fistula post, you will find me complaining endlessly about my inability to control my persistant rectovaginal fistula. I, too, have Crohn's primarily in the rectum and constantly have fistulas, even after having a surgical repair. The only thing that ever helps me is flagyl. I have taken it with Cipro, as well as by itself. I am currently taking only Cipro because I was experiencing tingling in my hands and feet while on flagyl, but with the Cipro alone, I am back to square one. Yesterday I was in so much pain that I was actually crying in the ladies room at work. I think I will have to go back onto flagyl, at least for a while. It seems to be much more potent than cipro.

You mentioned that you are on Cipro. Have you tried flagyl? I know it is one of the most awful drugs ever, but for me, it's the only thing that helps the abscesses. Also, I take as many warm baths a day as I possibly can. They really help a lot. Sorry that this is the only advice I can give to you...if you find the magic answer, please let me know!

 

[kendallblue]

Thanks Shadycat

They put me on Flagyl leading up to and following my first surgery. They also put me on Azathioprine at the same time. I took them together for some months, and then suddenly began having a violent reaction to one or the other that had me vomiting so frequently that I couldn't catch my breath and sent me to the ER three times. I've never been certain which drug it was, and I am terrified to get near either one of them. I may have to break down and try the Flagyl again, though. God knows I can't afford $10,000 per Remicade infusion with no insurance:lol: Obama should tap into us Crohn's sufferers to grow support for public health care...:ycool: Anyway, gonna call my specialist today and go from there. Thanks so much!

 

[Cookie]

Hmm, strangely I had a similar reaction (not quite so severe) and I was taking both Flagyl and Azathioprine. I had been taking both for quite some time, but had upped my dosage of azathioprine about a month prior. I swore up and down that the flagyl was what was making me ill, but my GI suggested I quit the azathioprine and see what happens. Well, I felt much better. I still think that the dosage was too high for me, but since we weren't sure that it was helping at all, I quit taking it all together. Not sure that this is at all related to what heppened to you, but I thought I would share

 

[s.a.m.]

There are other antibiotics you can take to replace flagyl...I found it made me extremely nauseous and really affected my appetite so I was put on something else. I also have had issues w/ abscesses and now fistula.

 

[bigtruck]

hi sorry to hear your suffering,there is a drug very similar to flagyl[metronizadole] which is called tinizadole and is reported to have fewer side effects, i have suffered fistulas and abcesses for many years hope you get some relief soon,if i can be any help just shout:smile: :smile:

 

[kendallblue]

Well, of course, I called my specialist on July 23rd and can't get in to see him until August 18th... God forbid something be terribly wrong! How does treatment go for those of you on government health care? I'm curious if you have as much trouble as we here in the states do. I'm a bit confused at this point. When I suffered abscesses previously, it was quite obvious what the problem was. This pain seems to be different, less severe, and focused very much in the upper most part of the back of my thigh...? Every time I think I've got this disease figured out...hmmm.

 

[beth]

I'm seeing my gastro-consultant privately, because in general the NHS is slow for stuff that isn't about to kill you. I think I'd probably still be waiting...

 

[mharvey90]

Ahh I totally feel for you about the health insurance problems, although I cannot relate with the specifics of your disease! I am a 19 year old college student, and as soon as I turned 19, my step-dad's health insurance dropped me. So I then got Aetna Student Health provided through my university. It is one of the worse health insurance plans. A month after I got it I had a really bad flare up and was prescribed asacol and then pentasa. After having those 2 prescriptions filled, I EXCEEDED my prescription drug coverage for the CALENDAR YEAR! (this was in March!) and ever since, my doctor's office has been fortunately providing me with free samples of whatever type of drug I need because I cannot afford them without insurance! Also, they are only covering 80% of any type of procedure, etc., so every time I get a CT scan or my Remicade treatments, I am getting a $200-400 bill. Ahh! I hope that you can get through all of your medical bills and that you see your doctor and you can find some relief! Good luck!

 

[s.a.m.]

Hi Kendall,

I feel for you...I really do. If you search the fistula post, you will find me complaining endlessly about my inability to control my persistant rectovaginal fistula. I, too, have Crohn's primarily in the rectum and constantly have fistulas, even after having a surgical repair. The only thing that ever helps me is flagyl. I have taken it with Cipro, as well as by itself. I am currently taking only Cipro because I was experiencing tingling in my hands and feet while on flagyl, but with the Cipro alone, I am back to square one. Yesterday I was in so much pain that I was actually crying in the ladies room at work. I think I will have to go back onto flagyl, at least for a while. It seems to be much more potent than cipro.

You mentioned that you are on Cipro. Have you tried flagyl? I know it is one of the most awful drugs ever, but for me, it's the only thing that helps the abscesses. Also, I take as many warm baths a day as I possibly can. They really help a lot. Sorry that this is the only advice I can give to you...if you find the magic answer, please let me know!

Shadycat

Has it ever been recommended to you to have an ileostomy?? I am having similar issues ( Crohn's primarily in the rectum) and it seems like I can't get it under control.

 

[Cookie]

Hi s.a.m.

I have an appointment with a surgeon on August 20th. The last time I saw her she suggested trying the flap repair again, although she only gave it about a 50% chance of working because of the amount of scar tissue I have in theat area, so I was kind of on the fence. She wanted me to stay on flagyl indefinitely, but like you, it makes me so nauseous and crappy feeling. As I mentioned earlier, I finally quit taking it when my hands and feet were tingling constantly and switched to Cipro. Within 6 weeks, I was abscessed again and developed a second abscess. My doc said that the flagyl will never "heal" my fistula, but is intended to keep it from abscessing and getting infected...which suggests that the gas and fecal leakage thing is just something I'll have to tolerate? So, I think I will try the flap again unless she suggests otherwise.

Anyway, to answer your question...no, it was never brought up and I'm not really sure I'm ready for that, but I am curious to see what my surgeon will say given that I have another pretty large abscess (but I'm back on the flagyl and it is helping, so it will probably be gone by the time I see her). I'll let you know how it goes. BTW, I know that Danman and Erin have both had ileostomies to deal with persistant fistula issues...you may want to PM them.