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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/23/2009 3:28 AM (GMT -7)   
I see you're back online.

We were so worried about you when you were in trouble with your abscess. What happened? Were you able to get some help? And how are you now?
Co-Moderator Crohn's Forum.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/23/2009 2:36 PM (GMT -7)   
Bump
Diagnosed with rectal 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*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 3/23/2009 7:13 PM (GMT -7)   

Hi guys!! You have no idea how special I feel – checking and seeing you’re checking up on me!

 

I posted a reply to the abscess thread, but you’ve probably already read that!

 

I’m at work at the moment, so I will be quick, but I am doing OK – I would say it’s very up and down…

 

After my abscess initially seemed to drain/lessen (as a result of the antibiotics) – it drained the once with septic bloody sort of stuff (gross), it hasn’t drained significantly since then, but has been less painful, some days are better than others…. It still drains pus daily but not large amounts at a time.

 

I was so relived that i didn’t end up back in hospital and have been able to get through my first week at this new job. It has been hard, and by last Friday I was in bed by 6:30pm I was so tired. The first few days I took a prednisone tablet and pain killers. Since then I’ve just been on the antis.

 

Last night I had another appointment with the dr who gave me the antibiotics; he said it should be operated on and offered to change the dressings once the op had been done. I guess my gastro is hesitant to operate on it as it runs the risk of making a ‘bigger problem’ in his words. But I don’t feel like I can continue to live my life like this. Everyone tells me a different thing; to operate or not to operate. Its so hard to know who to believe. The flagyl is making me queasy all the time, and depressed, which it never did before. I honestly feel so down when I take it, I feel like I am not myself, like I am a different person, it makes me feel so down I’ve never experienced anything like this before. So today I am cutting down to 2 flagyl a day and taking my 1st tab at lunch. I feel it in my system, it makes me sick and tired and miserable. So lunch and dinner will be when I take them today….. and the penicillin-based ones I take at breakfast and dinner time…

 

I have an appointment this coming Tuesday the 31st with my gastro. I plan on demanding a referral to a colo rectal surgeon. I wonder if GP’s can also give referrals for surgeons?

 

Also, I am looking into finding a new gastro in Brisbane city since my old one is hopeless and I am now working in the city so I could access the GI a lot more easily from here. We have flex time at my new work which is great, I can take afternoons off quite easily for dr appointments. I am thinking of putting a thread up asking if anyone knows a good GI in Brisbane city….

 

So that’s where I’m at at the moment – how are you doing?? This has been getting to me a lot emotionally at the moment, and I find that extremely hard, as well as the physical impact on my life and not having the energy to do what I want and perform how I would like to etc.

 

But I am relieved that the abscess didn’t land me back in the ER.

 

Hopefully a surgeon can give me a better answer!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/23/2009 7:16 PM (GMT -7)   
Phoebe, did you see my post in your abscesses thread about getting yourself plugged into a proper specialist team at the big teaching hospital in Brisbane?
Co-Moderator Crohn's Forum.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 3/23/2009 7:19 PM (GMT -7)   
I did, thanks ivy – do you think I would need to admit myself to the ER to get this team though? Because I don’t want another hospital stay……. But would like a great specialist/surgeon

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/23/2009 7:30 PM (GMT -7)   
Phoebe, you do need a referral to see any specialist. The only way I can think of to bypass this problem is to get yourself into a good hospital and then be plugged into their outpatient clinics on discharge.

Another thing that concerns me is that if your bogan doctor is
a) not very good, and
b) hasn't even heard of setons,

then s/he probably doesn't have the necessary qualifications to prescribe Infliximab or Adalimumab, which you are probably going to need before too much longer. Only a few gastros have the qualifications to do this: as an example, my gastro here in the country is a very senior doctor, but I still have to go to the major teaching hospital in our capital city to get a prescription for infliximab or adalimumab. Apparently my country doctor isn't allowed to prescribe it.

Moral: get the best, and most senior, doctor that you possibly can.

I hate to push you to hospital when you don't want to be there, but I honestly can't think of another route for you. You might be able to thinnk of a different and better plan. Oh, as an idea, have you tried ringing your friends in the Crohn's society and asking them for advice? I remember you used to volunteer there.

Ivy.
Co-Moderator Crohn's Forum.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/23/2009 7:31 PM (GMT -7)   
Thanks for checking back in. Flagyl is very good against anaerobic bacteria found in the rectum. The stuff from your rectum is probably the infection that is invading your body and making you so sick. I was on flagyl for many months straight and truely understand how horrible you can feel -- I was very ill from an abscess I let go for many months (just like you). I was so very tired and weak and ill. But the flagyl is killing the bacteria in you so cutting back will just allow the bacteria to grow faster.

I had ups and downs too but I just kept myself in denial. Then it all came crashing down hard. My delay in getting treatment made it 1000 times worse and nearly cost me my life.

You are still quite sick. Really. Please read your post -- pretend you are reading somebody else's post and see what you think. Sounds like you are on a lot of pain meds and antibiotics. Why do you think this will heal by itself?? That is just not reality. You need to be under the care of a colorectal surgeon now.

I am very worried about you.
Diagnosed with rectal 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.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/23/2009 7:44 PM (GMT -7)   
ps. And Fallcolours is absolutely right, Phoebe.

btw, you might like to ask Andorable who did her ostomy operation. She was recently sent to a big city hospital to have her operation because her "real" hospital wasn't up to the job, so she might be a good person to ask for advice.
Co-Moderator Crohn's Forum.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/23/2009 7:59 PM (GMT -7)   
Phoebe -- I am sorry if I come across as harsh. Honestly I am just frustrated. I am hoping you don't end up like I did. If you do end up like me, you could find yourself on this forum pleading with others to help themselves -- and then watching them ignore it and go down a very bad path. I know that you probably aren't where I was -- I am just hoping you get help now so you won't ever get there.
Diagnosed with rectal 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.


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 3/24/2009 1:53 PM (GMT -7)   

after my daughter's surgery 3/13 for the perianal abscess (scraping it out) we went to her gastro guy for a followup and he said there were notes in her records that the colo-rectal guys felt she should have been having multiple sitz bathes per day.  First, she didn't have the time for multiple per day - then she had such pain she couldn't sit in the bath. This time when she came home it's 2 x a day, but more would be better. 

Maybe more sitz bathes per day will help. She couldn't take flagyl - it came right back up within a few minutes.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 3/24/2009 3:04 PM (GMT -7)   
I understand that everyone is trying to be supportive, but some posts make me so much more depressed than I already am. Day to day life is enough of a struggle without being made to feel like I am being irresponsible. By trying to maintain a career that I worked my butt off at uni for three years at uni for makes me responsible, not irresponsible. I will try my best to get the medical attention I need through my gastro and hopefully a colo rectal surgeon. But packing up my entire life and moving into hospital will only make my life worse, I would lose my job or alteast the respect of my co-workers, and even then I don’t know if it would result in anything allowing me to return to work. . I live on my own and there’s no one to pay the $210 a week rent except for me. I have to work. I want to work. I also want to get better. I don’t want to be miserable and in pain all the time. But if I go back to hospital they might just have me on a week of IV antibiotics and bed rest and wait for it to calm down/drain - - not a long term solution – and this is what happened last time I was in hospital. So I hope to see a colo rectal surgeon as soon as possible, and get some long-term management of this thing.

Also – I don’t have parents located close to me who can pack up everything and run to my side if I go into hospital. I have no one to do things for me. The only person who can is my sister, and she had to take a whole week off work last time I was in hospital to care for me. I don’t have a husband to do all the running around cleaning my clothes, calling my work, organising lifts to and from doctors etc. I am very much on my own, as much as my parents are supportive and call me almost every day. My life would come to a complete stand still if I ran into an ER and where would I be then? Sick AND without purpose/employment – I would be unable to maintain living where I am at the moment and would lose the plot.

I am trying to do the best I can in the situation put before me. Believe me, I wish things were easier. No body wishes that more than I do. I’m the one who has to struggle with working and the pain and sickness every day.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/24/2009 6:51 PM (GMT -7)   
I am sorry to have added to your problems. I think you are very responsible! You clearly want to work and support yourself and that is very admirable!! I also live alone and support myself alone, so I know how hard it is. In my case, I got so sick that it didn't matter what I wanted. I had been working as hard as I could and ignored my problem and then WHAM! The fistula plugged and stopped draining, the whole area was going septic and the cellulits was so out of control that the abscess area under the skin turned black with infection. This all happened in about a week's time. I had just enougth strength to drag myself to the ER.

Again, it is not my intention to convince you to throw away your job. It is to recognise that some conditions cannot be ignored because they hijack your health and your abilty to live your normal life for a while. But they can't take away your right to actively attack the problem with all you've got. I truly just don't want what happened to me and others on this forum to happen to you!! I'll stop harping at you now. I truly hope it works out as you wish and you see the doctors that you need to make you well.

Take care.
Diagnosed with rectal 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*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 3/24/2009 7:28 PM (GMT -7)   
I’m sorry fallcolours I didn’t mean for that to sound mean – I just find it all overwhelming on a day to day basis, and I try and look on the bright side of see the positive things. Like my crohn’s ‘tummy’ symptoms have been pretty great recently *touch wood* - I am trying to be proactive and get the help I need – and I’m slowly becoming more and more aggressive each time!  demanding results!!

I have booked an appointment tonight after work to see the dr who recently prescribed me antibiotics for the abscess. I will ask him to write me a referral to a brisbane doctor I have found who is a colo rectal surgeon at a teaching hospital; and at a few clinics around Brisbane. I called the colorectal surgeon’s office and the lady there has already booked me in for an appointment, so all I need now is the referral. It shouldn’t cost me the earth for the first consultation, and so I’m really looking forward to getting another opinion.

So I have my GI appt on Tuesday afternoon at 4 – and the colo surgeon on Friday morning. Luckily I have flex time so if I take a morning off it doesn’t matter…. I will run it past my boss but the great thing is the other guy who started when I did has been taking time off left right and centre to get skin cancers taken off!! So I should be fine.

I can’t express enough how much having this place and especially people like Ivy and Fallcolours here to support me – I would feel so lost in this crohn’s world without all this help.

That abscess situation sounds awful FC!! Was it peri-anal?

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/24/2009 7:43 PM (GMT -7)   
Yes, abscess started in my rectum an exits through a fistula (now a branched fistula) in the perineum. My first doctor was an idiot and I think that his bad treatment (and 2 incisions that were completely unnecessary) may have caused the same area to abscess 2 more times in the same place. Which is why I stress the importance of finding doctors who know CD. It sounds like you are really close to getting in with good ones! And good for you in being assertive! Good doctors like educated patients who knwo what they need.

Ihope your co-worker's skin cancers can be completely removed. I bet he feels the same way you do about taking time off when you are brand new. If your employer hasn't laid him off yet, they sound like good folks. Hopefully this means you will be OK taking time off too.
Diagnosed with rectal 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*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 3/26/2009 4:08 PM (GMT -7)   

 

That sounds awful FC. Blackening skin means serious infection, that’s so scary….. What is happening with it now? Did the surgery completely fix it in the end? Did they open it up or put a drain in?

 

This link is to the site for the surgeon I am going to see Friday week. He seems to have a lot of experience in the area and even has fact sheets on his page about fistulas fissures and abscesses. I hope he can help me get a more permanent fix to this problem. The abscess is ok one moment, painful as hell the next. This morning some more blood came out after my sitz bath before work, but not much…. Still any blood is better than none I guess if it means the infection is flowing.

 

Dr David Clark:

 

http://www.davidclark.net.au/about.php

 

 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/27/2009 5:14 AM (GMT -7)   
Hi Phoebe,

I hope your appointment with the surgeon goes well! From his webiste, it appears he has a lot of experience, although I didn't see Crohn's. I saw UC and his materials about abscess and fistulas. It did generally talk about how to deal with abscesses and fistulecotomies, which can be used for fistula that are close to the anus. It also mentioned fibrin glue as a possible fix for fistulae but it turns out that is not very sucessful. If he is good, he will consult with other experinced doctors when if he doesn't know something.

As for my terrible experience, my first doctor was an idiot. I was totally new to this and just didn't know better. He didn't open up the abscess and scrape it out but just drained it. Then he gave me antibiotics that were not right for what I had. I was very sick at that point and found a surgeon with experience. He scraped it out and put in a seton. It healed, but the incisions made by the idiot surgeon had damaged the area and the abscess came back two more times over the next year and a half. I now have two setons and have been abscess free since last May.

Please let us know what he says! I'm praying you get relief!
Diagnosed with rectal 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.


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 3/27/2009 6:46 AM (GMT -7)   
FC - do your setons still drain?  My daughter is hoping for a future without having to wear pads,  they in themselves cause her to get a rash and she absolutely refuses to use small gauze pads like the dr. showed her.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/27/2009 7:52 AM (GMT -7)   
Yes, I do have a little bit of drainage. It is getting less so I think my fistulae are shrinking. But there will always be some drainage with a seton. Thinking otherwise means she doesn't understand what setons are there for. They connect to the rectum so that "stuff" can drain out instead of getting trapped in the fistula.

The rash is because the "stuff" is irritating her skin. Without someting to catch the drainage, it is like constantly having watery poop in your pants. Ick!! I don't know what type of pads she is using that would cause a rash, but all I have to use is a 4x4 soft guaze pad folded around the setons. Rough guaze irriates me so I spend more to buy soft guaze. I then wear a thin maxi-pad just in case. My skin sometimes get irritated and I have had diapher rash too. She should use a zinc oxide baby ointment like Balmex on her skin to protect her skin. It really helps skin heal too.

Unfortunately, we just have to accept that having this disease means we have to change our way of living. Tucking guaze around a seton several times a day to catch drainage and protect your skin really is a small thing. I think she will eventually see the wisdom of using gauze if she continues to get rashes.

Take care!
Diagnosed with rectal 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.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/27/2009 2:49 PM (GMT -7)   
You are a treasure, FallColors. Thanks so much for your kindness and generosity. You're always there to nurse us through our seton woes :-).
Co-Moderator Crohn's Forum.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 3/29/2009 7:12 PM (GMT -7)   

Hi fallcolours

 

Thanks so much for the seton information. It’s really interesting for me as I’m thinking the surgeon might suggest a seton for me – either that or he’ll suggest cutting the whole thing out, and a seton seems a much less invasive procedure.

 

Since I am already using gauze for the leakage I don’t think I would mind having it with the setons, as long as I don’t have abscesses constantly reappearing and ruining my life!

 

When you had the setons put in, were you put under general anaesthetic? Did it take a long time? Was it painful afterward? Expensive?

 

I am just very curious….. My appointment is on Friday!

 

As for the drains themselves – how do they attach them? Do they stitch them into the skin inside the tunnel? How thick is the string that comes out? Is it very noticeable?

 

Sorry for all the questions FC, I’m just very interested J

 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/30/2009 12:15 AM (GMT -7)   
Phoebe, I can't tell you much about drains, but a seton is inserted under a general anaesthetic... at least, that's how they've always done it for me. You'll need to have someone stay with you that night... *or* will have to stay in the hospital, so it would be a good idea to be prepared for that.

Yes, you can be very, very sore afterwards... but that might be a matter of luck, as I've just had mine changed and it didn't feel as if they did anything :-/, whereas last time I was black and blue afterwards.

No, it didn't take long, but you should expect to lose the entire day to waiting, anaesthetic and recovery, and perhaps the next day too.

Setons are about as wide as a thin rubber band - thinner than your average hair elastic, if that makes sense. Yes, I do have a bit hanging out and tied in a knot, but it doesn't bother me. This is why you should get a colorectal surgeon instead of a general one: my first seton was inserted by a general surgeon, and bothered me until it was replaced by a proper professional.

I can't answer for expense, as I am on a disability pension and you're working, but even if you do have to pay up front, I'm guessing you should get most of it back on Medicare.

Hope this helps, and good luck!

Ivy.
Co-Moderator Crohn's Forum.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/30/2009 5:10 AM (GMT -7)   
Your colo-rectal surgeon will determine what type of procedure you need. My surgeon says he always takes CD folks into the OR under light or general anesthesia. He said many small abscesses can be drianed in the office for non-CD people. I've heard that is painful so I am quite happy to be out for it! He said that CD people require a thorogh examination to see if other disease processess are at work. Once in the OR, the surgeon will determine what level of treatment the abscess needs. Mine have always needed to be cut open and scraped out. It is a quick procedure -- 30 minutes or so under anesthesia. My doctor said he has had better success with CD abscesess by cutting and scraping rather than inserting a drain. Mine were very big and very deep so I was left with a large wound but they did heal after a couple of months. Yes it took a while to heal and I was home for 2 - 3 months each time. I am blessed that I can work from home, so after 2 - 3 weeks of resting, I started working from home.

I woke up to find a seton -- my doctor said to consider it a fashionable type of body piercing! Strange colo-rectal humor!! He inserted a seton when he found the fistula and said the seton is the initial treatment. Once everything calms down (months later), we could look at treatment options if I wanted to get rid of the seton (you can live indefinately with setons). As Ivy said, setons are thin plastic like a string. The ends are tied together with a silk thread. Yes, you can definitely see it. They really are wonderful things because they help prevent new abscesses along that fistula. How I hate abcessess!!

You will have to learn how to clean the seton. We've had many threads about how to prepare for abscess surgery, care for yourself afterwards, and clean and care for setons. I strongly suggest you search for these posts before your procedure. You may have to go back 18 months, but they will be very helpful to you!

My insurance paid for all but a couple hundred dollars. Ivy makes a good point -- you will need to have someone with you. Hosptials require you to have someone take you home after being in the OR. While you more than likely will be able to care for yourself after surgery, you will greatly appreciate having someone there for a few days afterwards! Don't try to be brave and think you can do this on your own -- you don't know how big the surgery will be. You will be wise to arrange for a relative or good friend to be there with you for several days after surgery. If it turns out you are OK, then they can go home. One reason to have someone is that you may not be able to sit for days. So no driving. Having someone to go to the store and take you to post-op checkups will be a blessing!

The great news is that after the procedure is over and you are all healed up, you will be free from the abscess! I remember how I felt less "toxic" immediately after the procedure. You will get well, be able to be active again, and will return to work!

Please search for previous posts and let us know how your appointment goes. Sending lots of prayers and encouragement your way!
Diagnosed with rectal 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.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/30/2009 2:23 PM (GMT -7)   
... And Phoebe, we all know it is going to be hard for you to find somebody to stay with you. I suggest you discuss this with your surgeon at your appointment, as he may be very kind and choose to admit you to hospital so you don't have to worry about finding someone to stay at home with you.

Just so you know, you may need a Fleet enema to clean you out beforehand. If this concerns you, or if you have perianal ulceration that could make the insertion of an enema very painful, I suggest, again, you raise your concerns with your surgeon, as he may be able to think of an alternative.

Good luck.

Ivy.
Co-Moderator Crohn's Forum.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/30/2009 7:49 PM (GMT -7)   
Hi Ivy,

Actually, I can't use fleet enemas. When I used one, the liquid just shot out my fistula! And it really stung! My doctor said it wasn't necessary because he would clean out the rectum. No prep was needed.

I agree with Ivy. Be open with your doctor.

Take care!
Diagnosed with rectal 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.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/30/2009 10:34 PM (GMT -7)   
Oh, yes, I had that happen too. And "stung" wasn't the word for it. It would have to rank in the top three most painful things I have EVER experienced. But I was one week out from fistula surgery and seton insertion, and some bright spark decided it would be a good idea to try the enema then. No wonder it hurt :-/
Co-Moderator Crohn's Forum.

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