Phoebesky!

Bump

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?

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.

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.

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.

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.

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.

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!

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!

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

 

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!

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!