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Avatar universal

Anal Issues/Bowel Movements

In Week 2 Triple Therapy with Incivek.  Sides pretty good except anal problems.  Started out getting tender, burning and itching from bowel movements.  Then became like voiding sharred glass.  Boy is that painful.  Dr. prescribed ProctoFoam.  Helped some.  Hemmroids are growing and I am now bleeding after intense and frequent bowel movements.  Not bleeding like bleeding but traces on tissue and in bowel etc probably from anal fissures.  So, has anyone experienced similar anal issues and what are you doing for it. I am using the foam and as much vaseline A&D as I can to keep it moist.  Also using moist baby wipes with aloe.  My bowel movements are so hot probably from the Incivek I am sure thats not helping either.  I do have to strain to get it all out. Its not diahreea but soft and light in color. I dread going to the bath room. God help me, lol.  Is anyone using fiber or similar products like metamucil, senokot, whatever to get this stuff out of you to keep from straining and tearing?  Thanks everyone for listning to my gross story and please excuse the spelling.  
24 Responses
Avatar universal
The Incevik comes out of your system through your bowl movements. We are all suffering from this side effect to some degree. Just keep trying to find what helps. I have been taking Pearl once a day which seems to me to work better than the stool softener I was taking, but you could try that also. Good luck. I am in week 20 and finished the Incevik but the tush issues stll plague me.
1747881 tn?1511918860
This is a very common side effect of incivek (got me as well) sounds like you are doing all the right things, might try some loperamide (generic name) to harden stools a little, The soft frequent one's are a b!@#h
1815939 tn?1377995399
You are not alone. I have been passing "shards of glass" too. These issues with hemorrhoids and painful bowel movements started about 4-5 days after I started treatment. They lasted about 6 days and then disappeared for about 2 1/2 to 3 weeks. Then they came back about a week and a half ago, lasted another 6 days or so, and now are gone again.

I am not sure anything I do is making a difference, but it might be, so I will pass on my treatments.

I find the flaming issues with shards of glass seem to start up when the stool gets softer and I am going to the bathroom several times a day. That seems to set the stage by really irritating the inner rectum. It seems that once I harden the stools some with Loperimide, the issues gradually decrease and cease (for a while). I don't mean take so many loperimde that you are constipated, but enough so you go only 2-3 times a day and where it is formed, not soft.

I could be wrong about this, but I think I read some place not to take fiber with these triple med pills because fiber binds with them (metamucil).

I also use Huggies baby wipes with aloe (unscented), preparation H cream on the outside, Preparation H suppossitories every night before going to bed (and also during the day when the glass shards are acting up), and prescription 3% Lidocaine cream with 0.5% hydrocortisone cream for the outside. I tried A&D ointment but it does not work as well for me as the Prep. H cream and the Lidocaine cream.  

My plan now is to nip the first soft stool in the bud by taking Loperimide and hopefully I will ward off several days of passing shards of glass.

I have to say, I could deal with the hemorrhoids and some discomfort or itching, but the Vertex company vastly understates the rectal "discomfort." It is not "discomfort," it is excrutiating internal rectal pain. I think more effort should be placed on good remedies for this problem which could, potentially, lead someone to stop treatment.

Hope you get some relief soon.
151263 tn?1243377877
You guys really have a problem with shyness. Stop beating around the bush and tell us in more detail what your problem is! ;-)
1711722 tn?1356491154
ClearJake & Pooh -- Thanks for sharing this delicate (albeit excrutiating) issue.  I am on VIC and had a few days of cactus butt (as I like to call it), but NOTHING like what Pooh has described.  Mercy!!  My doc was initially going to put me on INC but changed her mind (for shich I am thankful) after speaking with colleagues whose patients stopped treatment, due to the INC rash and firey bowels.  I have nothing to offer except my sympathies.  And maybe suggest a warm/hot bath with Epsom Salts (shrinks tissues) and/or Baking Soda (balances the ph; may help calm the itch).  Best to both of you.  I agree with Pooh.  I don't know how this is an 'acceptable' side.
Avatar universal
but the Vertex company vastly understates the rectal "discomfort." It is not "discomfort," it is excrutiating internal rectal pain.

Interesting enough I was talking to my Hepa yesterday  at my appoint.  He was invloved with a Tela trial and is now clinically treating patients with both VIc and INCI.
He said he is hearing about this particular side from at least 75 % of his patients.

I get the feeling he also  feels this side effect was understated somewhat by Vertex.. not neccessarily the numbers ,but the severity,and he is talking with all his patients about this when discussing what drug may be best  individually.

I  gather that he is prescribing both Vic. and Inci . about  the same (depending on individual circumstances ) however ,I though it was worth mentioning  .how he is hearing about this from most..

Possibly Vertex thought that if they had put on their labeling :

You May Experince A Flaming Dragon In Your Butt That Spews Hot Shards Of Glass".....  they may have been concerned about sales...just sayin

Certainly does not sound fun and my sympathies to all  who are going thru this....


Avatar universal
My Doc recommended Analpram HC, a 2.5% Hydrocortisone, 1% Pramozine Cream.  I believe it is a prescription medication…they gave me a couple of sample tubes.  She also recommended Anusol, which I found is no longer sold in US.   I ordered it through Amazon.com from England…took about a week to get.

I have been fortunate not to have any problems.  I eat a large volume of fruit and vegetables.  Carrots, celery, apples, cauliflower, broccoli, asparagus in huge amounts.   (I eat 4 lbs. of carrots and 3 bunches of celery raw per week)  I also eat ~16 small containers of Activia Fat Free Yogurt per week.

I don't know if my diet is helping or if I have just been lucky so far.  (Only in week 2)  HTH
190885 tn?1333029491
these burning and yellow poop ..like baby poop came on early for me and left at about 3 to 4 weeks....i continued to take the incivek with bad sx but not that...so it may get better.....good luck....billy
Avatar universal
I would mention also .that this particular doctor I was speaking with thinks Inci  is having great results... and he is prescribing it readily...just in case my post gave the impression otherwise..
1815939 tn?1377995399
Possibly Vertex thought that if they had put on their labeling :

You May Experince A Flaming Dragon In Your Butt That Spews Hot Shards Of Glass".....  they may have been concerned about sales...just sayin

LOL. That is so true.

It is interesting that your hepatologist is finding so many incidences of this problem (and that Vertex seems to have understated the severity of the pain/problem.

I think some of the problems with some of these side effects are 1) their frequency and severity are understated, and 2) the treatment (including side effects) is relatively new and doctors have not figured out the best ways to deal with each specific side effect. In my opinion, medical professionals have to be realistic when asking people to put up with severe side effects. They have to be willing to investigate and work out a treatment plan that works for each side effect the patrient has and they have to inform the patient in advance so the patient can be prepared and do what is needed to keep the side effects under comtrol. I think there is still a lot of ignorance on the part of medical professionals about how to best treat some of these side effects. I really think they have to be proactive so the sides are nipped in the bud. (I am hoping I have the glass shards figured out and under control, LOL.) (I am not knocking medical professionals. I am one myself. I am just stating that I think there are still many things that the medical professionals don't know about these drugs and their side effects.)

I think I would still opt for Incivek, even with the flaming dragon butt. I am more worried about having to stop treatment due to anemia or some other blood problem than the flaming dragon. I may be wrong on this but I believe Victrelis has more problems with anemia than does Incivek. Regardless, they each have their own sets of sides so the solution is to find acceptable methods to prevent and/or control the sides.
Avatar universal
First week of treatment thought I would die. I got impacted for some reason and had to have an enema. I thought I was in labor. After that first week I didn't have anymore problems but am wondering what that enema turned loose as I don't think I have ever gone to the br that much. This past week which is my 10th on encevik is totally different. Two hours in the tub this morning was the only thing that got rid of the external burning and itching. I looked like a prune. Prep H suppositories help alot for internal pain and hubby brought home prep h external cream which has helped. I never had hemorrhoids until this treatment. And to say that the drug company understated the sx is the understatment of the year. I will be really glad when incevik is done. Sorry if I got too graphic, but hard to help without descriptions. I truly feel for you and hope you feel better fast. Thanks everyone for making me laugh with the comments, I needed that badly :) I did report this to my specialty pharmacy and they said that that was the number one issue they had been hearing about. I told the rep that if this stuff hadnt done such a good job of kicking the virus in the butt I would have stopped the incevik several weeks back. I also had a rash that looked like a combination of shingles, chicken pox, and measles talk about miserable.
1749655 tn?1321804534
I suffered for nearly the entire 12 weeks I was on incivek.  I described it as razor blades and at times thought I would pass out from the pain.  I used everything known to mankind and some things worked for a while and then became less effective.  I also had terrible diarrhea.  I did take metamucil and then also immodium (which saved my life).  I used baby wipes, A&D, and everything else I could find including trying several prescriptions.  Just keep trying things and drink lots of water.

Good luck!
Avatar universal
My husband is having a tough time with this particular side effect as well.  He has a prescription for a topical anesthetic.  He uses Balneol.  He takes Metaumucil and drinks a lot of water.  He also uses baby wipes.  He says that the bowel movements are frequent and very painful, a lot of anal/rectal discomfort and blood.  I think these things are probably helpful, but not relieving the pain/discomfort.  Any other ideas out there for this side effect?
Advocate 1955
151263 tn?1243377877
It's very possible Vertex did try to downplay the exploda-a$$ side effect of Incivek. But in Vertex's defense, I recall during the drug trial being asked what my symptoms were. I had butt itch too, although no glass shards or the more extreme stuff mentioned here. But I remember the nurse almost trying to coach it out of me that my a$$ was on fire without actually saying it directly. I think  she was asking me that because many of the other patients had mentioned something about it to her so she saw a pattern developing.

I think collectively, many test subjects did not report - or under reported - the frequency and severity of A$$ ITCH out of sheer embarrassment. So the final FDA warnings based on the reported side-effects may reflect that under representation. But now that so many more people are taking Incivek and openly communicating with each other on the internet, people are realizing it's not just them with a scorching case of A$$ FLAMBE; it's actually pretty common to one degree or another. So they're more comfortable coming out and admitting their butts are FLAMING HOT ITCH BOMBS. lol

Anyway, it passes once you stop the Incivek. An SVR, or a real good shot at getting one, is worth dragging your butt on the carpet like a dog for a little while. ;-)
Avatar universal
Anyway, it passes once you stop the Incivek. An SVR, or a real good shot at getting one, is worth dragging your butt on the carpet like a dog for a little while. ;-)

Hahahahahahha thats exactly what I tell people that I feel like a dog with a wormy butt rubbing on the carpet, lol ...anne
Avatar universal
I am in week 8 of incivik and the two products that have been helpful for me are nupercainal and balneol. The nupercainal helps with the pain and the balneol helps heal inflamed tissues.  got both from amazon.
1794638 tn?1345158661
Welcome to whats known as "FIREEHHAH" .     Ive had Flaming Dragon Butt since Day one on INC.   I mean it wasnt 2 hours after I took my first dose and it was there with me until now, which I am starting on Week 11 , tomorrow.   This is not only excruciating but has to be a cruel joke of some kind.  
However, after about the 3 week of running to the throne every 30 minutes, I finally got mad enough and blew up on the NP and she said, "OH ,  you can take up to (8) Imodium a day if you need too !    She, also wrote a script for "Anusol" Suppositories,  this was like inserting a red hot poker where the sun doesnt shine !   So I nix'd that option and just stuck with Imodium, lots of baby wipes,  Tucks, (They are wonderful)  A & D diaper cream with 40% Zinc .   Butttttt,  (no pun intended)  the major issue here is to keep "the area" clean.       I also had lots of Bathtub time in the beginning, like 3-4 times a day to cool off my hemmies that erupted like a flippin' volcano !    Sorry for the visual, but just felt like I need to finally get this off my back !   LOL     Good Luck !    Keep the Imodium close, and I only take one a day and it works great !   Carrie
1749655 tn?1321804534
I agree with Eric.  In addition to A&D, I used both products and especially liked the nupercainal which I found in the supermarket while on vacation.  
Avatar universal
I am so glad I'm not alone on this.  Today is my last day on the Incivek and I have been suffering from "acid hole" for the last 8 weeks.  It has gotten so bad this last week that it makes me want to vomit everytime I go.  I am so excited to be done with this drug, but I don't think anyone, aside from you guys, can truly appreciate why.  I tried Tucks with witch hazel, but once the skin was broken it was like slapping on an astringent pad.  The dr told me not to use prep-h after the skin broke, so I have been living in pain. I tried Formula 2, and it worked alright, but I need more help.  Going to try a couple of the different suggestions on here.  Thank you all for being so open.  This is the only major side-effect I'm having and I can't talk to anyone about it, and it hurts like hell.  So THANKS again!
Avatar universal
Shards arevback for me in week 23, and my doc wants me to see a colar-rectal do because it is likely fissure, and that could cause an infection. None of this is easy!
1927056 tn?1323499539
welcome to what I called my burning ring of fire.  yes I had all this crap.  I read a lot on here that I wish I would have read when I started.  it was more acute during the incivek but has waned since I stopped.
things that helped _me_.
1. witch hazel (tucks or I'd soak a cotton pad with witch hazel and hold between my cheeks for a while).  if your hole is irritated it may burn for a moment but it really cooled my down and calmed it.
2. vicuous lidocaine, it's a numbing gel that i'd put on 30-60 min before a BM and it kept it number for hours.  this was great during the acute phase.  I highly recommend your doctor giving you this, don't get the ointment or cream, get the gel.
3. watch what you eat and see if it exacerbates it.  the more messy the stools were and the more I had to wipe, the worse.  i had to lay off of fruit and some veggie and the good grains.  and the spicy stuff.  it's this balance of having a firm stool (what I call a bank withdrawl, one lump sum) and it being too hard (which stool softeners helped) or too messy, which were the worst.
4. aloe.  straight from the plant or buy the refriged kind at health food stores that you can drink.  don't have to drink (unless you want) but some of that over my cracked helped.
5. keep it dry and clean.  I took to wearing boxers and if i'm home buck named on my stomach with my butt in the air to air it out.  if you put any of the stuff on it above (lidocaine gel, witch hazel, aloe) let it dry off (squat near a fan or use a hair dryer on the no heat setting.
6. ok this may gross some people out, but after a bm i'd get in the shower and gently manually make sure all fecal material was out.  having anything there pissed it off and I think contributed to the itching.  this helped a lot.  probably not the most comfortable thing during it, but I KNOW it helped not **** it off from stuff being down there.

things that pissed it off.
1. the butt wipes, don't know why but they did, I switched to baby wipes which I think were better but once I stopped using them it helped.
2 messy bms. see section above.
3. hard grains, i can't stand refined carbs, but had to go to the smooth wheat or white bread and rice, potatoes, etc. instead of the good kind of bread that crunches.

I would recommend you also really watch what you eat.  i wish I would have been more stringent at the start cuz I found out later some things made it worse.  start out with (fi you can stand this) with like 6 things you eat for a few days (eggs, bread, peanut butter, apples, etc)  stick to it and see if when you add something (like a spice or food) if it acts up or makes worse.  someone on here said acid stuff made it worse and for some reason I was craving OJ (costco had the lots of pulp version and I like orange juice you can chew) and i started drinking a lot of that. in retrospect that may have anger it too.

it gets better.  I was somewhat miserable but functional during all this, the numbing gel, get it.  after I stopped the incivek it went from a 7-8 on the uncomfortable scale on day-to-day and during bms to now (i have ONE MORE DAY of ribasphere!!!) it's like a 1-2.  no itching for 2 weeks!

good luck, let me know if any of this works.
Avatar universal
I am on day 7 of incivek tx and the fire breathing dragon in my *** is getting worse instead of better. My doctor prescribed me Anusol suppositories but they seem to just make me want to go more frequently and provide no relief from the pain. How do you relieve the pain? How do you reduce inflammation and heal your ***? They say not to take anti-inflammatories like Advil or Alieve but this is what doctors suggest to people with hemarrhoids. Tylenol will not reduce swelling like Advil or aspirin. Does Hydroxyzine antihistamine help with the hemarrhoids? Any advice is good advice.
Avatar universal
I'm sorry you're going through this - it was the worst sfx for my husband.  He got relief by taking 15g of water soluble fiber at night, and 1 Immodium for 2 days to firm up his stool.   While he was healing, he used Nupercainal (which someone here on the board recommended) which helped a lot.  Only had this the first week, and many people here have had that experience as well.  
1815939 tn?1377995399
You don't state whether the pain is internal or external.

For the external hemorrhoids and burning, I used Prep H cream, a prescription xylocaine/hydrocortison cream, and baby wipes to clean the area very, very well. I think sitz baths would work for the external stuff too. I know getting in the shower and just letting warm water run over the area helped a lot.

For the internal pain I found the only thing that really solved it was to firm up the stools (pretty firm, not like rocks, but firm). That would prevent that internal (crapping shards of glass) pain, which is probably from fissures caused by the burning diarrhea. I took loperimide tabs, usually 1 or 2 a day, but not every day as I did not have loose or soft stools every day. That was the key, firming the stools. In addition, I inserted a Prep. H suppository every night and that seemed to help heal the inside.

I hope this helps.
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