ROMMEL
Our Dog's Fight Against Perianal Fistulas
A Continuing Story
ROMULOUS KIPRING OF PINE BROOK
March 24, 1998
I noticed Rommel licking himself in a very unusual way. Out of curiosity, I
lifted his tail, and saw what looked as if he had bitten a chunk of flesh out
of his rump, about the size of a quarter. Local Vet thought about PF, hoped it
was an anal sack problem. We put Rommel on antibiotics for 2 weeks to clear
it up some... when there was no improvement, I was refereed to Paul
Bookbinder in Canastota NY (Board certified).
April 3, 1998
Rommel was definitively diagnosed with PF today. The fistula involved about
150Deg of the anal area. I decided, there and then, to go ahead with surgery
since it appeared it wasn't PF disease but rather a fistula caused by anal
gland problems. While preparing for surgery, they discovered more fistulas on
the other side and the surgeon called me with Rommel on the table. Dr.
Bookbinder was hesitant on operating at this point, and I decided to try the
Cyclosporin treatment.
April 7, 1998
First visit with Cornell University in Ithaca NY. Confirmed as PF Disease.
Rommel is started on Liquid Oral Sandimmune Cyclosporin at 2.5mL twice daily.
We anticipated at least 8 weeks treatment. Cost $325 for a 50mL Bottle.
April 16, 1998
Cyclosporin treatment is showing some results. First, there has been a lot of
color change around the area. The lesion itself isn't a deep red anymore, its
more pinkish white. The edges of the fistula don't look as defined, like they
are healing. Other areas especially round the fistula have turned a bluish
color.
April 22, 1998
Rommel's Cyclosporine treatment had reduced the major fistula to about half
its size. The small fistula on the opposite side doesn't seem to have changed.
Rommel's bad fistula is about 5/8" x 1/4" and he has 2 other very small spots
on the opposite side.
May 5, 1998
3rd Cornell trip. The Cyclosporin reduced the large fistula to about 1/8" in
diameter. Another small spot opened on the opposite side. Cornell suggested
switching from Sandimmune Cyclosporin to Neoral Cyclosporin. Neoral is used
for kidney transplant patients and has shown to be more effective in treating
PF in dogs. Neoral Cost: $335 50mL Bottle
May 13, 1998
Rommel has shown no symptoms from Cyclosporin.
May 15, 1998
The Neoral Cyclosporin had began to reduce the Fistula's again. Dr. Farese
(Cornell University) explained that the Neoral would absorb better and that we
could increase Rommel's Cyclosporine/blood concentration without increasing
dosage. He suspected the reason his fistula stopped shrinking was because he
needed more Cyclosporine and that switching to Neoral and keeping the same
dosage should do it.
May 21, 1998
At this point, Rommel had only 3 very small spots. I agreed at this time to
try something for Cornell regarding treatment. The idea was to reduce the
Cyclosporin dosage but still maintain its effectiveness. To do this, we
added 1200mg of Tagamet per day, and eventually reduced the Neoral to 1.0 mL
a day.
June 16, 1998
The Tagemet/Neoral treatment did not work. The Fistula's returned worse than
they were initially. We then switched him back to the full dosage of Neoral,
and within 4 days, they began to reduce in size once again.
July 16, 1998
Rommel visited Cornell again. They were REALLY trying to avoid the surgery if
at all possible. At this point it was more of a financial battle than a
disease battle. He had one open fistula about the size of a dime. We decided
to look into TOPICAL Cyclosporin treatment based on conversations with the PF
Support group.
Mon, 20 Jul 1998
Rommel STOPS his Oral Cyclosporin treatment and is switched completely to
Topical. Spoke with Dr. Reigger's office (New Mexico) regarding the 25%
Cyclosporin topical solution. They simply mix 1mL of Oral Liquid Sandimmune
with 4mL of Weston oil or Olive oil (depending on the dog's preference).
July 23, 1998
Topical treatment shows results. 2 pin hole Fistula have closed, the larger
about 1/8" X 1/4" seems to also be healing.
August 25, 1998
Rommel had surgery to remove the PF diseased tissue. Regarding the Topical
results... I know the Topical treatment was keeping the fistulas from
festering. We found the larger fistula to be larger than expected during the
surgery. Perhaps, this was just too large for Topical to treat effectively. I
would like to have seen if the smaller one could have been cleared up by the
Topical. However, after a long struggle with Topical Cyclosporin treatments,
the financial burden, stress and concern for Rommel I decided to go with
surgery to remove the affected tissue.
August 31, 1998
Rommel began showing signs of a problem. It looked like the sutures were
failing, but then it was clear that the PF disease had returned.
September 3, 1998
Cornell confirms that the Fistula have returned and recommended surgery again.
September 12, 1998
Rommel was released after his 2nd surgery. Its evident, based on the
incisions, that this surgery was more aggressive than the 1st. Post-op care
is the same... keep it clean & Dry.
November 9, 1998
Rommel remains Fistula free. We are still keeping the area shaved and clean,
and our fingers crossed.
Treatment summary:
Total Costs: $4,730.00 and 13 vacation days
Time to resolve: 6 months
For anyone wanting a more in depth detailed look at Rommel's fight against PFs the actual emailed accounts are below.
The following are Dave's emails DJ kept as a Journal.
(Dave has a great attitude and is an inspiration to us all.)
Tue, 24 Mar 1998
I've got a long 2 weeks before I can even get in to see this surgeon. Is there anyway that I can Identify this as PF and not a gland problem for sure (his vet was uncertain)?
Did anyone notice any changes with their dogs? Behavior? Appetite?
Fri, 3 Apr 1998
Hi gang!
Rommel was definitively diagnosed with PF today. Initially, it looked like the fistula was caused by a bad anal gland. It was thought to be about 150Deg. I decided, there and then, to go ahead with surgery since it appeared it wasn't PF disease. While preparing for surgery, they discovered more fistulas on the other side and the surgeon called me with Rommel on the table. Between the two of us, we came up with 4 choices...
1. Do the surgery on both sides, and risk a 1 in 3 chance that the surgery would be too intrusive for Rommel to survive post op functionally...
2. Remove the large Fistula, and allow him to recover before repeating the surgery on the smaller fistula...
3. Remove the large bad fistula, AND get him on Cyclosporin in an attempt to treat the smaller fistula.
4. Just go with the Cyclosporin...
I just have not accepted the fact that he is ill enough to justify destroying his muscle and nerves as badly as this procedure will... My concerns with the surgery choices are this. First, that after this Painful and destructive surgery, Rommel will be in pain, suffering only to have to be put down due to disfunctionality... And after talking with the surgeon, I am very concerned investing 2 to $6,000 on the Cyclosporin only to have no results, exhausting my funds for surgery possibly... It almost seems that just giving up, and enjoying what time he has (how ever long that is) would be a reasonable choice!
Has ANYONE talked to pharmacies or the manufacturer of Cyclosporin to find out what happens with the expired medicine that they supposedly discard? Have we thought about putting together a nonprofit organization for Canine PF, perhaps with enough compassion to get the major suppliers to donate this stuff?
OK, folks, I pick up Rommel tomorrow, and then we are off to Cornell Tuesday for one last opinion. Any and all comments as always, are not only welcome, but also much appreciated.
Tue, 7 Apr 1998
Greetings All!
Well, Rommel and I made our first visit to Cornell today and I'm glad we went.
They described the fistula's as moderate, and were not too concerned about serious implications from surgery... certainly they were much less guarded about his prognosis than the other surgeon was. Someone said the experience and skill of the surgeon means a lot, and this seems very true.
We are going the Cyclosporine route for now... I can afford about 8 weeks of this stuff and still have funds left for surgery if necessary (barely). The price is slightly less than anything I've heard yet. 100ml cost $325.00. He's getting 2.5ml twice daily.
I think we need to contact the AKC about recognizing a new breed... "Golden Shepherds" by the time we're done with this fistula deal, they are worth their weight in Gold! :)
If there is ANYTHING I can do to help the PF support group (aside from cash at the moment) Please let me know, I would be VERY interested in doing all I can!
Thanks again for all your help & wishes... I'll keep you updated with Rommel's condition if you promise to do the same with yours. :-)
Thursday, 9 Apr 1998
DJ, you mentioned Optimmune before I think... Does/Did Trisha have open lesions from the fistula's? Rommel looks like he took a chunk out of his but it's about the size of a big quarter. If she has open wounds, are you putting the ointment right on the wound?
How much does it cost to treat for one week?
Thursday, 16 Apr 1998
Hi Everyone!
Rommel is going on his 11th on the Cyclosporin. I can definitely say that SOMETHING is happening. I'm not sure if this means its working, but here is my observation (we go to Cornell again Saturday).
First, there has been a lot of color change around the area. The lesion itself isn't a deep red anymore, its more pinkish white. The edges of the fistula don't look as defined, like they are healing. Other areas especially around the fistula have turned a bluish color.
Currently his is only on 5.0mL Cyclosporin a day...
OK, this is or 3rd time I've read something on diet. The doctors at Cornell didn't say anything particular about diet, though I didn't ask. Has everyone tried improving their dogs diet like this? Did this come from doctors or is this everyone's experience?
What is Prednisone?
Wed, 22 Apr 1998
Rommel's Cyclosporine treatment has reduced the major fistula to about half its size now. The small fistula on the opposite side doesn't seem to have changed. I can not keep him on Cyclosporine forever obviously. I had originally budgeted at best, 8 weeks of treatment (with just enough left over for the $800 surgery).
Rommel's bad fistula is about 5/8" x 1/4" and he has 2 other very small spots on the opposite side.
How do I determine that continued Cyclosporin treatment is or isn't going to be cost effective when considering its affect on the surgery... in other words, is another $1,500 for 4 or 5 weeks cyclosporine worth it if the improvement is marginal? Will surgery be $1,500 easier for Cornell?
Wed, 22 Apr 1998
Sorry to keep pestering, but the more I think the more I ask. I "think" a Vet at Cornell described the tissue around the anus as "Abnormal" in shepherds and susceptible to Fistula's.
Does the Cyclosporin heal this "Abnormal" tissue, but the tissue remains and is always susceptible to this AND does surgery remove all the abnormal tissue, reducing the probability of reoccurrence?
How many of you have been through reoccurring fistulas? How many times can the surgery be performed without causing too much damage?
Tue, 5 May 1998
Rommel has just returned from his 3rd trip to Cornell. He has been on Sandimmune cyclosporine since April 7th... 2.5mL twice daily. His Fistula was originally slightly larger than a quarter and until 2 days ago, had nearly closed and was about 1/8" in diameter. However, 2 days ago another spot opened up where he had previously healed and this spot is now slightly smaller than 1/8. The 2 other small fistulas on the opposite side have nearly closed.
Dr. Farese has recommended changing from the Sandimmune to Neoral. Apparently, they found that Neoral is more readily absorbed for the treatment of perianal fistulas. His thinking is that they may need to increase the blood concentration of the medicine and by switching to Neoral, they can do that without increasing dosage and without increasing cost (Neoral and Sandimmune are the same cost.)
Dr. Farese did not recommend using Optimmune for treating the fistula and mentioned that it is normally used for eye treatment. I still wonder if using the Optimmune locally along with the Cyclosporine is such a bad thing.
Anyway... we go back in another week. My hope is to avoid surgery if at all possible/feasible.
Rommel is 108 lbs and is on 5mL /day. A 50mL Bottle of Sandimmune is $325 while a 50mL bottle of Neoral is $335.
Sat, 9 May 1998
Another reader wrote:
What have you heard about the success of Cyclosporin. My female German Shepherd just got diagnosed with fistulas. My vet had recommended surgery at Virginia Tech. I had that booked for the 22nd of this month. I talked to my vet again yesterday and she mentioned they had two dogs currently in treatment with Cyclosporin. My dog's fistulas are not a normal case. She has two small fistulas, but she said it might be hard to take care of the case surgically. What have you heard? What are the side effects? My vet is getting back to me today. How is your dog doing?
Dave's Response:
I've got a 4 year old German shepherd male who has been on cyclosporine going on 5 weeks. The Fistulas are MUCH smaller than before we started treatment. We began with oral Cyclosporin called Sandimmune but just switched to Neoral cyclosporine, also oral, but apparently better absorbed by the tissue in perianal fistula. I've been going to Cornell University in Upstate NY. The Cyclosporine is $325 for a 50/mL bottle. Rommel, at 108#, is on 5mL a day. I'm going to try to afford 8 weeks of cyclosporine treatment, and then if necessary follow up with surgery (I would DEFINATELY keep him on Cyclosporin as long as necessary except for the cost.) I haven't noticed any side affects with the drug.
Wed, 13 May 1998
Subject: Cyclosporine symptoms
Hello all,
I think it was Carolyn who had asked if I've seen any side effects from using Cyclosporin. At the time (about a week ago) I hadn't seen any changes in Rommel. However, the last couple of days have been trying. He has gotten VERY lame in his front right leg and is also shedding more than usual... a lot actually. I go to Cornell next Thursday and I'm praying his lameness is from the Cyclosporine.
About shedding. People have asked me if shepherds shed a lot... I tell them " actually, they shed all year long and then twice a year or so, they molt"!
Fri, 15 May 1998
Hi all, quick update... Rommel had been on Sandimmune Cyclosporine for 4 bottles worth (40 days) and his fistula had shrunk to 1/4 its size. The last week it stopped shrinking and another spot opened. Cornell University started using a new form of Cyclosporin called Neoral (used in kidney transplants). Rommel has another 2 days to finish this bottle. In that short time, the fistula's have begun to shrink again BUT he has gotten very lame in one front leg with no apparent injuries on his paw or anywhere.
Dr. Farese explained that the Neoral would absorb better and that we could increase Rommel's Cyclosporine/blood concentration without increasing dosage. He suspected the reason his fistula stopped shrinking was because he needed more Cyclosporine and that switching to Neoral and keeping the same dosage should do it. Well, I go back to Cornell next Thursday but it looks as though the fistulas are shrinking once again.
For all you Cyclosporin users, I would talk to your doctors about Neoral... this may make your treatment a bit less expensive if this form of Cyclosporin allows you to decrease dosage.
Thursday, 21 May 1998
Well, just when you think you understand what's going on. Rommel and I just returned from Cornell again this morning. After switching to Neoral 2 weeks ago, we've seen very good improvement in Rommel's fistulas. Today, there are only 3 small spots (one fistula was a bit larger than a quarter when we started). Now, for the interesting information ... (please keep in mind I'm a mechanical engineer and NOT a doctor. This biological stuff gets to me sometimes.)
We are trying something new, and experimental. Dr. Bliss explained that with humans, too much Cyclosporine makes them ill. But with kidney transplants, they need to insure a certain Cyclosporin level to prevent rejection of the new organ. The problem has been not crossing the fine line of too much Cyclosporin vs. not enough. They get around this with another medication which (the way I understood this) suppressed the body from breaking down the cyclosporine before its absorbed into the blood. I CAN'T remember the medication they use).
SO... They tried this several times with dogs. They found that they could reduce the dosage of Cyclosporin by 1/2 or 1/3 in some cases. It does make the dog ill and it too is costly. BUT the bottom line was about a 30% saving in medical costs when both medicines were used. SO THEN, Dr. Bliss has been wanting to try something for a while. He said that Tagamet should in theory, do the same as the other medication does. We are putting Rommel on 1200mg of Tagamet a day and have reduced the Neoral from 2.5 to 2.0mL a day with instructions to gradually reduce this over the next two weeks to 1.0mL a day
Ill keep you all posted on results regarding his perianal fistulas.
Has anyone else heard of any of this?
I also forgot to ask them about Optimmune? For those of you using Optimmune, how are your results? Are you using Optimmune with other medication or treatment? What does this cost?
Has anyone recently been successful in getting expired Cyclosporin from the hospitals? Have we ever considered forming a non-profit org to facilitate getting expired medicine and distributing it to folks dealing with this disease?
OK, this is threateningly long so I guess Ill wrap it up and wish everyone luck with their best friends! :)
Oh.... Concerning Rommel's lameness. They examined him and think it's a soft tissue injury and not related to the Neoral. They seemed a little concern that dogs don't frequently get soft tissue injuries but suggested letting him go another week and hope for improvement. Gosh I hope this isn't something ELSE cropping up because the Fistula's have made it pretty unlikely that I could afford treating another serious infliction. :(
OK, time to round up all these German Shepherd tumbleweeds blowing around my house!
Tuesday, 16 Jun 1998
Hi Friends!
Quick recap... Rommel's fistulas were nearly gone. On his most recent bottle of Neoral, Cornell reduced dosage and added Tagamet hoping he would continue to respond with less Cyclosporin.
Well it didn't work. After 4 days at 4.0mL (from 5.0mL) there was not much change. Per their instruction I reduced to 3.0mL and within 3 days, the fistulas started opening. I kept at this dose for another 2 days until it was obvious it wasn't working. I then increased back to 5.0. We were at Cornell again on the 11th. I actually had planned on surgery but Dr. Reese said that the fistula's were too bad for that once again. So, I bought 2 more bottles of Neoral and he is on the full 5.0mL. PLUS the Tagamet (I keep wanting to say Viagra!) So anyway, to my surprise, only 4 days since our last visit, they are starting to close quickly again. I would love to continue another 8 weeks as Cornell expects would be necessary but I just cant afford anymore. I've spent $3,200 since April 7 (sound familiar?). When this Neoral is out (about 20 days) we are heading back for the surgery.
Now about a different issue. There is no question that Rommel is an Alpha. He has always been VERY intolerant of other dogs. But with training, one-on-one with a behavior specialist and a lot of work, I got this 4-year-old pretty sociable with people (as long as I was there). Unfortunately, these visits to Cornell have to be very stressful and trying on him. When we there, I have to continually give him my attention. If I try talking to someone or signing in, he is all OVER me jumping and crying. When we are in the exam room, he growls at every doctor that walks in now (until they talk happy to him then he walks over and kisses then).
Any idea's on how to make these trips less stressful?
Tuesday, 7 Jul
Dave's response to another reader:
Hi Scott!
My name is Dave; I'm from upstate NY and got your E-Mail from Carolyn. I've got a 4-year old male shepherd who I discovered had PF last April. I found this PF support group and they have been very helpful. With their recommendations, I brought Rommel to Cornell University (and have been going there since). The absolute BEST treatment is Neoral. It's a form of Cyclosporin oral. Make sure if you go this rout that you get the Neoral and not the Sandimmune. The Neoral absorbs better and has better results. I started out with Sandimmune and later switched to Neoral and found this to be true.
I'm not claiming to be an expert on PF BUT I do know that Tail Amputation has no clinical proof that it does anything, except maybe destroy the ego of the dog!
According to Cornell, the fistula's look very much like the way the immune system rejects kidney tissue in transplants. For whatever reason, some German Shepherds are rejecting their anal ring tissue as if it were abnormal. Once this begins, the fistulas will continue to grow however, even into what is usually normal tissue.
My plan was to keep Rommel on Neoral for 8 weeks and then if necessary, get the surgery. At about week 6, the fistula's had ALMOST disappeared! They were the size of pinholes (originally one was slightly larger than a quarter). I took a gamble and tried a different treatment in an attempt to stretch out the Neoral. With Cornell's supervision, we cut the Neoral dosage in half and added Tagamet. This was thought to prevent the Neoral from being broken down before being absorbed. Anyway this did not work and the fistulas came back with a vengeance. I knew at this point that I simply could not afford another 8 weeks of Neoral to completely get rid of the fistulas (minimally). But Cornell also didn't want to do the surgery with the fistulas as bad as they were. SO, I'm on my 3rd bottle of Neoral since then and hopefully, it looks like we can go to surgery around the 16th.
Surgery will not only remove the fistula, but the anal ring also. Many dogs have no reoccurrence though it can happen. If it does, the procedures are usually much less obtrusive than the surgery.
I'm sure you know that Cyclosporin is expensive. I get a 10-day supply (50ml bottle) for $335 from Cornell. Also, the Cyclosporin may not completely heal the fistulas. I think the absolute worse thing Cyclosporin can do is make the surgery MUCH less complicated.
The surgery also has its risks. The more extensive the fistulas the more tissue has to be removed and the more likely the dog may have too much nerve and muscle damage. This will lead to incontinence and likely euthanasia.
Fri, 17 Jul 1998
Rommel and I were at Cornell again yesterday. They are REALLY trying to avoid the surgery if at all possible. This has become more of a financial battle than a disease battle. I know how to fight it I just cant find the means. I had every intention of leaving him there for the anal ring dissection but, by the end of the appointment, agreed to ONE more bottle of Neoral.
Currently, he has one open fistula about half the size of a dime. The old fistulas are closed and healed over. The remaining has not changed in size the last several weeks of Neoral treatment and is Very stubborn. My previous experience suggests that another several weeks of treatment and then suddenly, it should start to close again. Cornell's written instructions are to continue Cyclosporin treatment for another 8 to 9 weeks (this just will not be possible financially).
HOWEVER! I have been talking to them this past week regarding your experience with the topical application of Cyclosporin. They very much want to try this on Rommel and should be contacting Dr. Riegger to get his specifics. They were going to "whip" something together for me yesterday but were a little apprehensive.
Has Riegger had any other successes besides Sweetie?
Do you know the specifics on the recipe for the topical stuff? How much Cyclosporin is used to what kind of oil etc?
They want me to start him on topical as soon as we get the stuff made, WITHOUT giving him any oral solution. I need to get him on this quickly because, after this 10-day supply of oral, I have no choice but surgery. So, this is Rommel's last chance at avoiding that...
Also, they took blood samples yesterday to measure the amount of Cyclosporin currently in his system. If anyone is interested in this let me know. (He's currently on 2.5mL twice daily)
I'll keep ya'll updated as things unfold.
Sun, 19 Jul 1998
DJ, anything I can do to help I will, your more than welcome putting Rommel's progress on the page.
Yes, Cornell wants me to continue the Neoral treatment but I just can't afford it. If I don't find an alternative, I'll have to get the surgery soon. I will be talking with Cornell tomorrow, they should have talked to the vet in NM to get the details on the topical solution. Just for the hell of it, I had 1/3 a bottle of the Sandimmune that I stopped using when I switched to Neoral. I mixed in 3 ML with 2 tlbs. of Udder Balm and have been applying that topically along with the 5mL of Oral Cyclosporin per day?!? I'm no chemist and certainly no pharmacist but I'm desperate! I know it's important not to have the Cyclosporin in plastic, or in contact with water so I'm sure you also need to be careful with what oils it's mixed with for topical solution. But I figured I got the stuff and haven't got much to lose in trying! Heck, I'm not even sure if the Sandimmune (Oral) Cyclosporin is the same stuff they have been mixing for topical?
Rommel's main fistula is also very stubborn. It's now about 1/3 the size of a dime and not changing very much. I know from experience, that if I stop the Cyclosporin, fistula's break out within 4 or 5 days and grow quickly. Cornell still tells me that it's important to completely heal ALL the fistula before cutting back/stopping treatment. And then there's a chance that they won't come back. They are finally willing to perform the surgery with some certainty that he will not have any problems but still caution about the fistula returning. They are VERY pro-Cyclosporin because of the results they get but I don't think they appreciate the high cost as much as they say they do.
If the topical Cyclosporin works as well as Dani has said, then this may be an answer, even if it means continued treatment during their lifetime to manage the fistula? As soon as I get an idea of how the topical stuff is mixed, I'll send the recipe your way.
If, I get results with the topical, I'll hold off on surgery.
If I get even the slightest indication that the topical does not prevent the fistula from growing, I have to go for surgery rather than risk then progressing to the point where surgery is highly risky.
Mon, 20 Jul 1998
Subject: Mom's secret home recipe for PFs?
I finally spoke with Dr. Reigger's office regarding the 3% Cyclosporin topical solution.
They simply mix 1mL of Oral Liquid Sandimmune with 4mL of Weston oil or Olive oil (depending on the dog's preference).
Apparently, this is how they have been treating PF out west (at least out of this office) with some success. I didn't want to take up much of their time with details of how many cases and what kind of results etc.
I'm going to whip up a brew and start this immediately, and continue giving him oral dosages until this last bottle is gone. Ill keep you all posted on the results.
Opinions welcome again.... Cornell, as I have said, is very apprehensive about performing surgeries while there is the availability of medical treatment (despite the cost to the owner). Rommel has one main Fistula that will not go away, another on the opposite side that can and has flared up and then 2-pinhole sized fistulas near the bottom that don't change.
Initially I think Cornell was talking about surgically treating just the bad fistula. This made no sense to me because after the surgery, if I stopped the Cyclosporin, the others would flare right up.
They addressed this by saying they can do the anal ring "dissection" and risk incontinence AND probably see a recurrence of the fistula sometime later.
Assuming I did the anal ring thing, how have most of you been dealing with recurring fistula? Cyro surgical treatments? Any comments or suggestions?
Finally, there was another GSD-PF patient that had visited Cornell for the 1st time on Thursday the 16th. Does anyone know who this was? Also, do any of you know of an Irish Setter that had recently been treated at Cornell? Just wondering how these people are making out.
How many on this mailing list currently have dogs with active PF?
OK OK I guess that's it for now!
Tue, 21 Jul 1998
Another reader wrote:
My GSD, Harley, still has two fistulas one small one even smaller. We just finished our last bottle of Cyclosporine that we can afford. My vet said that her fistulas are rather shallow and that Harley may be able to live with them. But we can do another surgery later if and when I get the money. I wish I still had some of my Cyclosporine left so I could try the topical solution.
Dave's reply:
Hi
Just a warning (I'm not sure if this was just the case with Rommel or if everyone should expect this...)
Rommel's fistulas were eventually shrunk from the size of a quarter, to the size of a pinhead because of the Neoral Cyclosporin treatment. While they were this small, (not completely healed) we reduced the cyclosporin dosage from 2.5 twice a day, to 1.5 twice a day and added Tagamet. Within 4 days the fistulas had both grown to the size of a dime! So bad that surgery had become too risky again! I've been battling to get them back down since (about 3 weeks).
I'm not sure if this topical is going to work. This is his 2nd day on it. I'm worried that if you do not continue to treat Harley's PFs until they have completely healed, they will easily start to grow again.
If I do find that this topical treatment works, I do have a new 50mL bottle of Neoral just waiting to make a whole batch of the Cyclosporin anal sun tan lotion stuff!
If the Topical DOES NOT work I am going to use the last bottle of Neoral ORALLY to get him as clean as possible before surgery.
Tue, 21 Jul 1998>
DJ wrote:
What did it cost to get the ingredients to make the topical solution? Which oil did you use? What measurements did you use of everything?
I'd sure like to give it a try on Lance.
Dave's reply:
It couldn't hurt trying it on Lance!
It's simple. I did exactly what Dr. Riegger said.
The exact recipe is:
Mix 1ml of Cyclosporin to 4ml of Wesson Oil. I actually mixed 4ml Cyclosporin to 16ml of oil and PUT IT IN A GLASS CONTAINER.
The Cyclosporin reacts, or sticks to plastic. I used on of the 10 empty Neoral bottles I keep.
So, if one 50mL bottle of Neoral costs $345, and it will make 200mL of Topical oil, and where I normally use 5ml of oral Cyclosporin a day compared to the 1 to 1.5 ml of topical a day, you just reduced your Cyclosporin treatment cost a LOT!
This is WAY premature but.... this is Rommel's 2nd full day without taking oral Cyclosporin. The smaller fistula is the one I'm watching. It is about 1/8 '" long and just a needle width wide, a little slit. I "THINK" this is closing. I'll know for sure if this works by the weekend or early next week.
Let me know if you mix some of this topical stuff up. I'm going to try and contact the Canadian folks tomorrow.
That's if for now DJ... talk to ya soon
Tue, 21 Jul 1998
Hi Carolyn,
You're right about the 3% deal. When I first discussed this with Dani I thought this is what he mentioned. It's actually 1/5 Cyclosporin, which is 20%, a LOT higher than 3%. I may have misread his mail as he may have been talking about the percentage in the Optimmune, which I have no experience with? So, from here on out we'll fondly reference this love potion as the anal vegetable oil... well maybe not, perhaps we should just stick with 20% Topical Cyclosporin.
Something a little funny. As we all have, Rommel and I have our PF routine 3 or 4 times a day. I call him over, command him "Down", he flops to the floor and I straddle him, grab his tail and "go at it". Well, I never really paid much notice but I've been doing this in the sunroom, with huge glass sliders. I notice my neighbor across the way looking at me during one of our sessions. I can only imagine what she thought, Me on top of my 108 lbs German shepherds, going at his but with a ruler, syringe, swabs and a spray bottle! She probably doesn't know if she should call the Humane Society or the psychiatric ward!
OK, enough of that!
Hey, I tend to be liberal with my E-mails both in quantity and length. If anyone is not interested in receiving these PLEASE let me know and I'll be careful not to bother you with all this "stuff".
Until next time....
Thursday, 23 Jul 1998
Well I have been using ONLY the topical Cyclosporin on Rommel's fistulas since Monday June 20. Previously, after 3 days of reduced oral Cyclosporin dosages, Rommel's fistulas grew larger very fast and took 3 weeks at full dosage to start to shrink again.
Its still WAY too early to determine the effect of the topical treatment on Rommel. BUT.... He has one larger Fistula on the right, a very small open fistula on the left and 2 pinholes towards the bottom. Here is my VERY early observation....
First, the Fistulas HAVE NOT flared up like they did when we reduced the dosage of Oral Cyclosporin (remember I stopped the oral all together this time).
* The largest fistula, about 3/8" square and maybe 1/8 to 1/4" deep may be slightly growing. I'm being very careful in watching this because obviously, this fistula is our biggest concern at the moment.
* The two pinholes on the bottom however have completely closed and I see no sign of them!
* The smaller fistula on the left has also begun to close and seems to be healing.
I'm going to continue the topical treatment. IF things continue to proceed as they are, it looks like the Large fistula may be TOO large to be effectively treated with topical. Maybe there's just too much diseased surface area and the Cyclosporin simply can't reach it all efficiently enough? (Damn it Jim I'm an Engineer not a Doctor!). I wonder if Cyclosporin injections in the muscle would do anything, or maybe a "Cyclosporin patch"? (Yeah like a GSD is going to walk around with a patch on his butt! I THINK NOT!
If the larger fistula continues to grow the next 3 or 4 days, I'm going to add the Oral back into Rommel's treatment while continuing to apply the topical to all the spots. I'm beginning to re-think my plans... now I may consider surgery on JUST the large fistula and try to manage the smaller, and any recurrence with this topical approach.
AGAIN, this is WAY too early for me to say with certainty what result I'm getting... but I think these early observations are very interesting!
Tue, 25 Aug 1998
Rommel Update
Hi Folks :o),
Well Rommel had his surgery last Wed (Aug 19). I found out after the fact that Cornell decided to extract both the remaining fistulas... so as it stands now, this guys is fistula free!
Post Op is a bit trying....because he completely freaked out when I picked him up (oh my god German shepherds are psychopaths!) the discharge was quick. Later Friday night, he bled a lot, leaving blood all over the floor. I took him to the tub, cleaned him up and everything (external sutures) looked good. I figured something happened with the stitches inside. I called Cornell in a bit of a panic and they said it's possible that blood had built up in the rectum during surgery and he just passed it. About a half hour later he had to go outside and everything looked good. No problems since then.
My guess is this dog is very uncomfortable. He only walks about 3 feet before sitting down quick and looking behind him as if he expects to find horse flies or something... it makes me laugh sometimes but then I feel so bad knowing what he's going through. OH !! And those DARN HOODS they make you put on!!! EVERYTHING in my house has been knocked over - LOL !!!
Now the game plan is to use up the remaining bottle of Neoral Cyclosporin at the full oral dosage of 2.5ml twice daily until it's gone. And then re-visit Cornell in another 10 days or so to remove the sutures. I still have a full bottle of the 1part-cyclosporin, 4 part-wesson oil on hand to which I'll keep close by.
So that's it for now... just the daily routine of cleaning, giving cyclosporin, going home for lunch to clean and give a "hood break", pick up my plants, lamps and tables, only to do it again at around 5:00pm, then the night routine and then it all starts over the next morning. But you know what... I'd still do a LOT more for this guy!
Regarding the Topical results... I know the Topical treatment was keeping the fistulas from festering. We found the larger fistula to be larger than expected during the surgery. Perhaps, this was just too large for Topical to treat effectively. I would like to have seen if the smaller one could have been cleared up by the Topical (it had closed several times, then re-opened).
Does anyone know if the Fistulas start on the surface ? Or by the time you see a fistula break out, that means there's enough in the tissue that it broke surface ????
The problem with Cyclosporin is that orally, you need a LOT to be effective (but who knows what else it is doing to the dog at those dosages). And topically, you can't get enough to the affected tissue if the fistulas are large.
Well that's my update. If anyone has any comments, updates, suggestions or questions please... send them my way...(You can email Dave at [email protected])
DJ, thanks for all the help and encouragement !!!! :o) Any progress on the Tea Tree Oil ??? or other approaches ??
Also, I haven't heard anything on Lance in a long time... How's he doing????????????
Dave
Thursday, 27 Aug 1998
Post Op routine
Hi Folks ! :)
Just a quick note on some techniques I find very helpful in post op care of the surgery area. We know the importance of keeping the area clean and dry. I started by trying to use a soft, wet cloth to swab the area. This was simply too painful. I then went out and purchased a hand held shower head. After each "outside visit" I bring Rommel into the bathroom and he volunteers himself into the tub :o) I set the water low and luke warm and gently rinse him clean (he even props his tail up a little for me. I think he knows I'm going to get his tail up either way so rather than wrestle with me he just nicely volunteers this.) After our "butt bath", He gets out, lies down and I gently pat him dry with toilet paper. Then, I've put Providone Iodine (10%) in a spray bottle and I spray the area with a light mist. Oh yeah, one more thing... really good treats after this whole routine goes a long way for getting shepherd kisses after.
This has not only reduced the amount of physical contact in the area, but it also does a much better job than I had previously been doing. Its been a week since the surgery and things are going well. The incisions are clean and seem to be healing well with no sign of infection. He is still on 5mL of Neoral a day, until I run out (about 4 more days). Then its back to Cornell for suture removal. I expect they will want him on 1 more bottle of neoral...
Rommel's Definition for Freaked Out:
The technician walked Rommel out to me, he walked right by, nice and calm and proper... didnt even SEE me LOL. She sat down and he sat down quietly on the opposite side of her. She started talking and I had my eyes glued on Rommel.. THEN, he must have scented me because He stood up QUICK and looked out the front door giving little "Woofs". Then he turned, and from behind her back, he spotted me sitting on the other side of her. In an INSTANT, he was climbing up OVER her and onto me LOL ! He was scratching and crying and whining and barking and kisssing and kissing and kissing and I got knocked down and then he started kissing and barking and crying and scratching and kissing and kissing and kissing and....
That's how Rommel "Freaks Out" LOL !! Hell, By the time I gained enough composure to stand up half the students from the OR area had come running out cause they heard all the fuss Rommel was making LOL !!
Oh no, I just went through the cleaning routine and damn it if he doesn't want to go our right now LOL... OK, here we go again........
Dave - Rommel
Friday, August 28, 1998
Hi Dave,
What an excellent idea for cleansing. I set it up immediately for Lance. I'd like to add that for those who have trouble getting their dog's into the bath tub I have found it helpful to put a hard plastic kiddie pool downstairs in the basement where I have a spray shower nozzel hooked up to our faucets and I can let Lance stand in the pool as I spray him clean and then I just tip the pool water out into the floor drain. Works like a charm. :-)
So glad to hear Rommel is recovering nicely.
Lance has adapted to his newest command of "shot time". He goes straight into the kitchen and lays down by the counter so I can administer his shot. Only 3 more days to go. Boy I sure hope this stuff kills off the organisms. The skin aroung Lance's scruff area is getting mighty tough and harder to get the needle through. Poor guy!! :-( He is such a sport about it too.
His PFs are calm right now so that is good. Might be a result of the antibiotics (or so I think). I'm just glad he has some relief right now.
Will add your latest email with the cleansing tip onto Rommel's page.
Take care,
DJ
Date: Thursday Oct. 1 1998
Rommel is doing ok. His sutures were out last Thursday and things look clean so far. I know what you must be going through with those two. Rommel too has a sister, a spaniel who is 8. 2 weeks ago she took off after a squirrel and ran into a pipe that was pounded into the ground (neighbors). It had Sharp barbs on in and she punctured her easophagace and slipped a disk in her neck. It took a while but she is finally getting back to her ole self, wagging her tail, eating and hangin with the family again. Rommel's been great with her, usually he is very rough and careless but he must know something's wrong. These last few weeks he lays with her and kisses her .
�I swear these dogs know what's going on.
How old is Tasha and how is she doing now? Rommel's mothers name is Tasha too, she's a sweetheart... a real lady. Rommel on the other hand is a typical teenage boy slob, complete with farts burps and careless attitude.
Her owner and I take turns watching these two and she is a joy to have around.
Wish I was closer to you so I could take Lance and your Tasha !!!
Exactly where is lance with the PFs at this point? Have you gotten anywhere with the tea-oil treatment or any other treatments?
Date: Wed, 7 Oct 1998
Clean as a whistle...
I must be losing it!! I know people can get conditioned to unfavorable things... I have a tarantula even though I HATED the damn things at first. But I got used to it and actually think its kind of cool now.
BUT, I NEVER expected I would say this....
My dog's but is an absolute PLEASURE to look at! I'm serious, I look forward to looking it over as soon as I get home from work!!! Think I need professional help?????? ;o)
Needless to say, the second surgery looks good and the whole area is as PF free as any dogs' butt should be. I do have two questions however:
1. Right on the sphincter muscle are what I would call, nodulars... like fleshy pimples about the size of pin head. There are maybe 4 - 6 of them. Not sure if they're just scar tissue from surgery or what.
2. Also, right underneath the anus is a pretty deep pocket, or fold in his skin. Its probably a good � deep and is perfect for holding dog chocolate. This worries me because it REALLY takes a bit of effort to clean him each time he's been out. Just spraying him down with the showerhead isn't enough to dislodge everything, I actually have to help clean it out.
I'm considering going back to Cornell to see if they think this could be surgically corrected or if I even need to worry about it?
My real concern is PF reoccurrence. And since we don't know what causes these, I had planned on keeping him spic and span down there. I'm worried that my discipline with this will slowly decline as time goes by as it really is a lot of work to clean it 3 times a day.For all you Post PF folks, what's your daily routine now, and how clean are your dogs? Rommel almost ALWAYS has some left over on hit butt after being outside and he knows enough to go right into the tub for his butt shower every time (its actually pretty funny), He walks right past me and goes upstairs.
This is a good thing because then I actually feel obligated to washing him (LOL) any thoughts?�
On 10-13-98 Marty wrote:
The poor dog has never had an accident before (really) and is so embarrassed each time he looses a tiny amount. I want to cry for him. It really freaks him out, poor guy. He is better than he was so I am hopeful that this will self correct. Has anyone else had any experience with this? �
Dave Responds
Hi Marty,
�Following Rommel's second surgery, we experienced just a few occasions of incontinence. Each time it was immediately after he had gone (and was back in) and his stool seemed to be particularly soft. Like Ajax, he lost just a small bit... After about a week, there were no other incidents.... I've been cautioned that if a dog is incontinent after surgery, it's likely that they will remain that way. But I think the vets define incontinence differently than we do? Does Ajax lose anytime during the day or is it right after he has been out? Is he good all night?I think with all the surgery, it takes a few weeks for the pain and swelling to go away... If your having serious incontinence problem before 2 weeks, then muscle and nerves have been damaged, if your having just a slight problem, perhaps some healing time will resolve it as was the case with Rommel. Marty, I would spray Rommel bottom with the showerhead after being outside, then dry him with toilet paper and gently spray mist Betadine on the area (which i put in a spray bottle). This routine worked great as early as 2 days after the surgery. With the sutures out and the incisions healed, the Betadine is out, but he still gets his butt bath at least once a day.
Date: Fri, 23 Oct 1998
A Rommel PF- Summary
It has been a little over a months now (Sept 11) since Rommel's 2nd surgery. He still looks PF free and is a very happy dog.I've been thinking about my experience with this disease. With the treatments we've tried, the money I spent and the time it took.
Initially, surgery seemed horrifying to me. The thought of losing a dog to incontinence was something I didn't want to deal with. Now, after having been through it, I suppose I feel differently. I'm sure that if the surgery turned out differently, if Rommel did become incontinent, then I would be all for the Cyclosporin treatment and whole heatedly against surgery. I also keep in mind that we are in remission, and that this may fester up again.
The reason I'm writing I guess, is to hear opinions again on the best course of treatment and to see if we have any current stat's on PF cases. What kind of treatments are done, how many, and what are the results.
Considering our (mine and Rommel's) experience with Cyclosporin... despite the fact that it indeed reduced the fistula's, I was never able to completely heal them with this treatment. The main reason may be that my funds ran out before the fistulas did. I do believe that had Rommel continued his full dosage of Cyclosporin, the fistulas may have been cleared up.
I spent nearly $4,000 and 6 months fighting fistulas with Cyclosporin, and $400.00 and 2 weeks resolving them with surgery.�
Do we just tell friends who come to us with question what OUR experience has been and let them decide what's best for their love?
If I had to make the decision again with a different dog, even with what I know and have been through, I would still struggle with the choice between medication or surgery. Just my thoughts.
Date: Fri, 23 Oct 1998
Carolyn Replies:
Dave
I understand your feelings. Personally, I am not sold on the cyclosporin. It doesn't seem to be as effective as originally touted, and is cost prohibitive for most pet owners (as you have very well found out). Prednisone does basically the same job for a fraction of the cost.
If I were faced with this situation again, I would pretty much follow the path that I did with Kandi. I would use Prednisone. It seems to work about the same way as the cyclosporin (inhibits the immune system) and though there are side effects, at least we know what they are. We don't know the long-term side effects of the cyclosporin. Its use is too new. And cyclosporin appears to be a much stronger drug.
However, I would not leave Kandi (or any other dog) on the prednisone as I did Kandi. I would use it for upwards of 2-3 months until the fistulas appeared to be at their lowest ebb, or had responded as much as it appeared they were going to, and then follow-up with either a cauterization (in Kandi's case, the surgeon scoped out all the diseased tissue and then used heat cauterization). We were lucky. The PF did not return and no repeat treatment was needed.
When people come to us with questions, we need to be as honest as we can and give them as much information as we can about their various options, and then let them decide what is best for them. There are several kinds of surgery available, some I like better than others, but folks don't always have access to vet care with the best treatments (at least what I consider the best treatments), so I tell them what I can and let them make the decision they feel comfortable with. At least they are then in a better position to discuss the condition with the vet/surgeon and ask intelligent questions.
I'm glad Rommel continues to do well. I think I may have told you this before, not sure, I know it's in my article. Our surgeon did tell me that if we got past six months without the fistulas returning, the incidence of recurrence dropped drastically. So keep fingers and paws crossed for the next five months.
Keep the area clean and treat with Betadine or a similar product to kill germs, etc. on the surface. Keep the hair trimmed out as that will allow better air circulation and you easier viewing.
Carolyn
Copyright 1999 DJ Hensch
Last updated May 12, 1999
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