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.

[working dog]

after the first three weeks of tx that symptom started to ease off ..as the anemia got worse the burning and that stuff wasn't as bad...in fact after week 4 that was kind of it for me....drink lots of water...i found that i had to drink room temp water out of a large mouth container to get the water down...good luck....billy

[BoceprevirGal]

So, it is final that you are going with the Incivek, instead of the Victrelis? Because the Victrelis doesn't have the anal issues.
    First of all, I am in a HCV support group, and three of the women in my group are your age, and treating with Triple Tx with Incivek.  Two out of the three women havent had serious issues, concerning anal issues.
    My Doctor runs the support group, and gives us a half an hour lecture, and we get to ask questions, and I have asked her about this horrifying side effect, of Incivek, and how to deal with it:  She thinks that eating alot of food, and the correct amount of fat calories, may help prevent this problem from occuring.
   Dont forget, avocados have a huge amount of fat and oil in them, and have always been fairly gentle on my stomach. You could have the oily stuff with something absorbent like white rice.
  Try to get your food menu organized, while you are waiting, and do a big shopping before Tx
   To answer you r question about what to dry your bottom on, I have heard toilet paper is very irritating. My husband has caught me using a clean pair of his boxers, after I have finished washing up, but of course I put them in a loadof wash right away, it wasn't like it was his shirt!  Any clean, soft 100% cotton piece of cloth, like an old soft hand towel, will work fine, and then I do throw it in the wash, as that area is never 100% bacteria free

[catmagic0406]

Yes, Invicek - straight from doc's mouth.  Acc. to him, it is not as complicated or some d@#m thing.  Whatever.  I do what he tells me to do.  I am not particularly happy about it, But each one of them has their own sides.

I don't like avocados but too bad - I WILL eat them when tx starts.  My husband loves them and is an expert at peeling them and even making them look all nice and pretty on a plate.  Neat freak.

Your husband's boxer shorts - HA HA HA

I read here that someone uses a hair dryer on low speed to dry off - and it sounds crazy but it sounds like a good idea (just don't get too close :) )

Thx again - you are a very valued member of this community I can tell.  

[catmagic0406]

Thanks, Billy.  I have been really remiss in not drinking much water at all - EVER.  Good suggestion about room temp.  And I HAVE to start drinking water NOW.

[pooh55811]

You may not get the anal symptoms. Many do not. Even if you get hemorrhoids and diarrhea, you still may not get the internal "shards of glass" pain. Most don't get that internal pain.

But I got all threee, lol, so here is my list:

Hemorrhoids:
1.  Get Huggies Baby Wipes with Aloe
2.  Clean completely after each BM (get in shower, stiz bath whatever, Huggies wipes) asap
3.  Dry completely -  with hair dryer. Set it on low heat.
4.  Preparation H cream (external)
5.  Preparation H suppositories (interna,l soothing)
6.  Xylocaine cream with hydrocortizone (presciption)
7.  Tucks (if the reactal area is irritated these may burn/sting)

Burning Diarrhea:
1.  Drink plenty of water
2.  Eat at least the 20 grams of fat with each Incivek
3.  Loperimide as needed (at first sign of soft or loose stools) (I took one when I started cramping because I knew the diarrhea was just around the corner)
4.  Keep stools firm (I did this with the Loperimide but others use fiber ... be sure to get fiber that won't bind with the Incivek if you decide to use fiber)
5.  Keep area clean as noted above
  
Skin irritation from burning diarrhea :
1.  Keep area clean
2.  Warm showers or hand held type shower
3.  Sitz baths
4.  Dry with hairdryer
5.  Desitin cream to irritated area (also A&D ointment, Baneal soln., Butt Balm, probably others, to protect, heal, soothe area)
6.  Xylocaine cream with hydrocortizone (presciption)

Internal "shards of glass" pain (which you very well may NOT get):
1.  Keep Stools quite firm with Loperimide (or fiber)
2.  Eat at least 20 gms of fat just before each Incivek dose
3)  Prescription suppositories that help relieve this pain.  

I had the internal shards of glass pain only when I had diarrhea or soft stools. There was zero internal pain if my stools were firm. Topical external remidies will do absolutely nothing for the internal shards of glass pain (caused most likely from internal fissures which are caused by the internal burning diarrhea). For me, the only solution was to keep the stools quite firm. This worked exceptionally well (once I figured it out).

I do not think specific foods will help firm the stools in this situation. I think Loperimide or some firming agent is needed. Getting plenty of fat seems to somehow blunt the external burning a bit. Not sure how that works.

Hopefully your side effects will be mild and maybe you won't get any issues. It is good to be prepared, though.

Hope this helps.

[Idyllic]

I didn't get the anal side effects or discomfort associated with
Incivek. I did get explosive diarrhoea when I did not eat
enough fat with meds the few times I was foolish enough
to do that.

It helps to be prepared with a variety of
different fats to take with your meds. I discovered what
worked one week did not work so well the following week.
It was almost if I developed an aversion to it or something.

[hrsepwrguy]

This is a post from about a week ago, might be worth looking in to

tiredofhepc  
May 08, 2012 .To: Violetblonde.I am on the Hep-C treatment. I too have had my battle with extreme Anal probems. Early on, my Doctor's PA, who is unbelievable, prescribed to me Rectal Rockets! They are an *** saver. They are made by a compound pharmacy, (regular pharmacy's can not fill this Rx) and they work incredibly! I am in St Pete FL, and you can contact the the Compound Shop at 727.381.9799 ask for Mike the Head Pharmacist. I am sure he will share the recipe with your local Compund Pharmacy and your doctor. These along with Prep-H with Cortizone, along with Lidocaine, (which is prescribed by your doctor), work great. I went from level 10 pain to level 1-2. The rectal rockets are used at bedtime and are easy to use. Just remember to get the instructions. .

[pooh55811]

"I guess I will have a nurse who will assist me with all this"
------------------------------------------------------

Don't count on the nurse or the doctor having a clue about anal issues. At first, I counted on treating team but they knew nothing about the anal issues. I think they thought I was fabricating the internal shards of glass pain. You may be lucky in getting a doc or a nurse who does know something, but if they don't respond and prescribe meds to give you relief, then get assertive and ask for what you need.

Thanks, Keith. I was trying to find that post on Rectal Rockets except I could not remember what they were called. I wish I had known about them when I needed them.

[catmagic0406]

pooh (lol)

WOW!!!!!!!!!!

Now THAT is a complete response.  THANK YOU!

[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!

[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]

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.

[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

[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

[willbb]

  
@ idyllic    Lol

yikes

[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?  

[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]

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

[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]

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.

[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.

[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.

[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.

[hrsepwrguy]

OH MY  LOL

I sure hope that is not what the doc prescribed