Incivek and Anal Dragon Fire

[catmagic0406]

I spent too much time yesterday (considering I am six weeks out from treatment) reading here about the horrors of the anal dragon fire and the internal pain.  That is gonna make things really rough, isn't it?  I read a lot of suggestions, and of course I know everyone is different.  Could some of you write out with numbers (1,2,3 etc  - I need structure - lol) what you would recommend to ease this?  I know about the Huggies baby wipes (I use them already - would never be without them - they are so useful for so many things).  When I read about the "shards of glass" stuff I couldn't imagine how I could deal with that kind of pain.  WHY do we have to get SO sick in order to maybe get well?  COULD tx make you worse in other ways?  (I'm adding questions to the original one so I'll stop)  

So it would be like:

1.  Get Huggies Baby Wipes with Aloe
2.  Clean completely after each BM (get in shower, stiz bath whatever) asap
3.  Dry completely - TOTALLY with ????????
4.  Eat ............... to firm up stools
5.  Take............... to firm up stools
6.  etc etc etc

I read that fat AND oil can be helpful.  Seems to me though that oil would make things slippery - and meaning less firm, more diarrhea.  ????  I have to choke down that 20g of fat 3 times a day anyway.  The oil - not so sure that would be beneficial???
Thanks.  I know I'm ahead of the game here, and I guess I will have a nurse who will assist me with all this, but I trust all of you more.

[dontworry_behappy1]

Not everyone has problems with sever anal/rectal burning.  I had what was typical of taking incivek - The first few weeks are the worst.  The sever cases
read about on this forum are not common.  Uncomfortable burning from the drugs and virus leaving your body can be a discomfort in the beginning and
you should be prepared.  Thousands of people treat with incivek.  Some are just not prepared for the unexpected - burning poop.  Rectal Rockets are
just one of the ways you can be prepared.  Many people laughed about this on this thread.  Maybe taking this seriously would have provided comfort
from the anal dragon fire for others.  You can have lots of supplies going into this treatment for this issue.  Some will provide comfort and others won't.  Sometimes to many choices isn't always a good thing.  I bought Desitin!
Every mother and baby knows it works for burning poop and it was all I needed.

DWBH

[catmagic0406]

I have decided that I am not going to have these issues because I do not want to have to endure the dreaded rectal rocket.  

I'm not using worry energy; I'm just info gathering in case certain things do happen.  However, from now on, I guess it's best to just hover around and not post until I do know how things are actually going.  Good point.  

[ceanothus]

For what it's worth, I'm another one who went through the whole Incivek part of tx with zero anal problems - not even a hemorrhoid, and I started out with a tendency to get those things from time to time before tx, so I was sure I'd have these problems during tx. My stomach and intestines complained a lot about the high fat intake (my guts rumbled so loud it kept scaring my cat away), and there was occasional diarrhea, but nothing painful. I read that less than 15% get the anal problems, so I'd save that worrying energy for whatever you actually do end up getting when the time comes.

[catmagic0406]

I know - do you believe these things????

btw, you wrote to me a couple weeks ago when I first joined this forum, and you were so right - so many helpful people here.  It's a godsend.

[rivll]

ouch.

[catmagic0406]

If I said what I really think about these things I'd be banned from this forum - and I don't want that to happen.  lol   I just cannot imagine having that thing sticking out of me - I mean how do you sit down?  Maybe some ppl like it though.  And then somehow it melts?  Huh?  Who in the WORLD designed this?


ha ha

[pooh55811]

Wow! Those things look dangerous, lol.

It think it is weird they don't go all the way in like supp. They stick out. Maybe I am weird, but I don't want to feel like I have something sicking out all of the time. That is just gross.  

[flcyclist]

Wow, have you seen what those look like?
----------------------------------------------------------
I live very close to St. Pete, FL.  Sure am glad I didn't use that doctor. lol.

[catmagic0406]

I am gonna be PREPARED as he!! for this thanks to all of you.  I will have a foot locker full of stuff just in case I need it.  But... those rectal rockets - maybe not.  I cannot WAIT to ask my pharmacist if he knows about those.  :)))

[hrsepwrguy]

OH MY  LOL

I sure hope that is not what the doc prescribed

[Dawn703]

Oh, yeah pooh55811 is right. Don't count on the nurse or Dr. And if you're having issues, be your own advocate and beg or demand what you want. Tell your Dr. about some of the meds we listed here, and tell him you want them.

[Dawn703]

First, you may not get that sick from this tx, not everyone does. Side effects come and go and vary in intensity. I get no side effects from the Pegasys, I do get anorexia, fairly bad at times. Not sure what that's from.To avoid the butt issues, I drink Kefir, eat greek yogurt, eat as much fiber as possible, and drink more than a gallon of water a day. when the anorexia got too bad that I couldn't eat fiber, I used water based fiber by metamucil. Has to be water soluble. I use preparation H wipes. Rarely did I get loose stools, and never got the flaming shards of glass. Roids were a different story. Got them so bad at times they would bleed, Dr. prescribed 2.5% hydrochortisone for rectal use. Worked like a charm. Watch out for the rash, ask your Dr. to prescribe fluocininide ahead of time. If you do get it, attack the rash as soon as it appears. It can snowball really quick. For mild nausea, I use sea bands and drink gingerale or chamomile tea; for more severe, Dr. prescribed Zofran.

[catmagic0406]

My doc. is not gonna be clear, trust me.  So for sure I will be posting labs, etc. on here.  I opted to stick with him for now since Dr. Gish is a ways from me (120 miles or so).  If I have any inkling that my doc. is going the wrong direction with MY life, Vegas here I come - where Dr. Gish is two days a month.  

Before all this starts, I am going to see my ex hep doctor who had to stop seeing the HepC folks because there are SO MANY of us - and he has a gastro practice - but he was so good and so on top of HepC stuff.  He was the only one out of four of these guys who was always watching my Ferritin level and had me doing regular phlebotomies.  For the first few years after diagnosis my Ferritin was constantly climbing.  Then the phleb. would take it back to normal.  Now, doesn't seem to be such an issue.  

Some of these docs seem to think we can't read our own labs.  Are they serious?  I mean, we are all experts on what those numbers mean.  Anyway, I am going to ask the ex his opinion on everything I know so far.  I don't see my "now" doc. until 6/26; biopsy is next Tuesday, and of course the doc is out of town for a month.  But when he comes back I will be hounding that office for at least a verbal on the stage and grade of this virus from hell so I can discuss it with "Dr. Magic".  He is still my main gastro even though his office staff tried to "kick me out" because I had to see another doc. for Hep C.  Like, HUH?  Made zero sense.  I saw him when my hub. had his last colonoscopy and told him about that - oooo, he was not happy.  So his staff hates me now (too bad).  I told them to ask HIM if they didn't believe that he said he would see me for gastro issues.

To think, I set up that appt. with him to schedule a colonoscopy.  Not gonna happen for a while.  And now I'm back to rectal rockets.  I'll stop.

[catmagic0406]

All I can say is that I don't know how I found this website, but I already know how much it will mean to me come tx time.  Actually, it already is helping.  I've got a Word file set up where I copy and paste stuff that might help - like Miss Pooh's 97 ways to tame the Anal Fire Dragon (I like that - exchanging the two words - you can see how he looks - MEAN).   ha ha - playing for one night only at theaters in the dark alleys of your town.  Pardon the PUN.

[BoceprevirGal]

Oh great, so now it's an X-rated double feature:  Rectal Rockets and Anal Dragon Fire, playing for one night only!!!  XXX..hot, n' nasty....ahhhh
    I am the most anal retentive person I have ever met, so I was so secretly relieved, when my Doctor made me into the Super-Hero that I am now...BoceprevirGal!
   Just remember, the Incivek is only for 12 weeks, and then this sx will resolve itself.
  I just read something interesting, concerning the Incivek rash, though...cant remember where though. It said that the Incivek people are now recommending that patients begin applying Eucerin and cortisone cream all over there bodies, daily, starting a couple weeks prior to Tx, and that this may help prevent the infamous Incivek rash.
   The anal issues, the rash, and the hemolytic anemia....these are the main three side effects to watch out for.  The HGB labs will tell you if you are getting the anemia...so keep a very watchful eye, and post your labs here, if your Doctor hasn't been clear enough on here...there are many experts on here~

[catmagic0406]

Okay - whew - seriously (if I can be after all this), if this was the only way to tame the dragon I would do it.  I have to keep my sense of humor to get through this thing coming up (tx).  I am visualizing actually using one of these rockets, and it ain't pretty.  With all we have to go through, this has to be the cat's meow, the ultimate humiliation - lol

[catmagic0406]

OMG - know what?  I think I might take a pass on these things.  They SCARE me.  I will use these only if the shards of glass become completely unbearable, and even then with GREAT trepidation.  I would probably go to a hospital to have it done.  As if.  Wow.

http://www.rectal-rocket.com/

(and that blog entry was toooooooo funny ~ not gonna post that particular link - hehe - a bit x-rated but HYSTERICAL)

[catmagic0406]

Thank you so much for these visuals. Ha.  My, even in different colors it would seem.  Naw, someone got creative and painted that bunch.  A nice little group, kind of like pawns on a chess board.  So... these are inserted and ... melt I HOPE.  Otherwise - that rocket propulsion fuel is gonna make the fire go higher, ya know?  

[willbb]

  
@ idyllic    Lol

yikes

[BoceprevirGal]

Haha, and it says it in such HUGE letters, on the top of the page, like the Marquis letters, for an X-rated Bruce Lee type movie!
   I had heard it was called "Fire Butt" (can we say butt on here?) but along with the fire, I also got this intense itching...which is when the Mr. Shower and then the blow-dryer came in handy. The Baby-Wipes just didn't take care of the itching for me, but everybody is different, so gather up your supplies, and try different things.
  The way this medicine works, you will be having to use the rest-room, while you are out shopping, etc, so that is when your wipes will come in handy.
   I began using alot of whole yogurt while popping the pills, and it seems to coat things, has acidophilus in it,  to fight off fungal problems, and bad bacteria, and has calcium in it which we need, especially
while on Tx

[Idyllic]

Wow, have you seen what those look like?
With a name like "Rectal Rocket" my curiousity got the better of me:

http://www.wyomingcompounding.com/images/RectalRocket.jpg


http://modgblog.presscdn.com/wp-content/uploads/2010/10/rr.png

[catmagic0406]

Gee, duh, I wrote "Invicek" up there instead of "Incivek" - I'm sure I won't be messing that up once it starts.

And I have to laugh about the title I used for this thread.  "Anal Dragon Fire" no less.  Anyone who is not going through this (and I haven't yet and hope not to) would freak out - think it was an x-rated tattoo or something.  ha.

[catmagic0406]

Yeah, I'm thinkin' my doc and nurse aren't going to be of much help IF this stuff happens to me.  I mean, how can anyone who's not experiencing it understand "internal shards of glass pain" - lol.  That is SERIOUS pain, and for sure I will get those Rectal Rockets if I have to have my sister in Clearwater help me out (near St. Pete).

[catmagic0406]

COOL!  Rectal Rockets!  FOR SURE I will contact your St. Pete folks ~ and go from there.  Of course, I will see if it happens to me, but... I just have this feeling that it will.

HUGE thank you for this one!