Hep c

It was hard for me to bring this up worrying about people being judgemental but it's a much needed topic for ostomates in this position  and I will never see anyone here outside the forum anyhow. 

Found out I had Hep c in the mid 90's and suspect I got it from my ex husband who actually had a liver transplant. 

Anyhow I was always afraid of the horror  stories of how rough the meds were to treat it. I had to work to pay bills so I never got treated. I was told besides my vit C deficiency that the hep C can also cause skin problems although the hepatologist felt more likely it was from the vit c .

I figured ok I'm sick and can't work. Cant go to a job with my skin opening up and bleeding. Had to voluntarily turn in my car because I can't make payments. I'll be getting my retirement SSI in September,   So i figured now is the time to treat. 

They started me on  Mavyret a medication thats taken for 8 weeks and you take 3 pills    a day. Much different than the old day horror medications.  I can tell you, I was and still am quite scared of the side  effects. Have already gotten upset tummy and diahrhea. 

it's not easy to get someone to admit on a forum or in person that they have this. This is why I felt strong about posting this in case anyone else with an ostomy comes up with this issue at least I can help answer some questions as I go along.  They can message to stay private if they wish.

Also I'd like to hear from anyone who went through treatment with an ostomy or any tips while going through treatment. I'd like to hear thier story of how thier body handled the treatment with the  ostomy . Also can message as to stay private if they wish.

Like I said this was pretty hard for me to just put out there.

 

 

 

 

 

My wife has it.  She got it from having her ears pierced at a shopping mall jewelery store back in the 1980's.

Over the decades, she refused treatment.  In the last year she has developed a skin condition called Dermatographia.  Any pressure on her skin causes an allergic reaction.  Hives, whorls, redness, welts.  It is a common skin condition with no treatment.  So I'm now pressuring her to begin the new Hep C treatment, using Dermatographia as an example of her "falling apart."

So far she has been dragging her feet.  

Good morning!

It’s very kind of you to share your very personal story in the hopes it will help someone else - I suppose the whole purpose of this site, but still very kind.

There is no shame in your diagnosis or at least there shouldn’t be.  But I understand that people are all too often mean and judgmental.

 

I have several patients on Mavyret and the biggest complaints I hear are headaches, fatigue and diarrhea.  I don’t have any ostomy patients who are on it, so I don’t know how that would change things.  But diarrhea for us is a pain in the ass because of possible leaks and more frequent bag changes as we all know.  You have to be super careful with drug interactions on the Mavyret; even over the counter stuff like vitamins.  Do not start anything new without talking to your prescriber or a pharmacist.

Kudos to you for starting treatment!  I hope these next couple of months are easy on you and just fly by.

 

 

@ Hisbiscus..a while ago you and i were discussing your immediate allergic reactions and i mentioned a friend had a similar thing goin on and i would ask him abt a diagnosis.

Saw the friend. He also has lymes disease.

The diagnosis was called  MCAS. mast cell activation syndrome.  It might be worth a google search. 

Anyways, i didnt forget abt asking him and telling you. Wanted to give u this though.

Do take care. 

There are 2 effective drug treatments.

Mavyret and Epclusa.

Mavyret contains the active drugs glecaprevir and pibrentasvir.

Epclusa contains the active drugs velpatasvir and sofosbuvir.

Talk with your doctor which one is appropriate for you.  Both treat genotypes 1 through 6.  

Do your due diligence.  Ask lots of questions.  You want to know as best as possible the condition of your liver.  Make sure you will be able to complete treatment without interruption.  

 

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Pretty nasty.  Lyme disease is caused by borrelia bacteria.  In North America, the black-legged tick, also called the deer tick, mainly carry the bacteria.  The bacteria are less likely to spread Lyme disease if you remove the tick within 24 hours.

G-Day Hisbiscus, Thank you for sharing with us. This is a class of people that have had all types of problems in their lives so please never feel you can't share yours with us. I admire you to say you will help other if they get the same prognoses. Your a special Lady Hisbiscus. Regards IGGIE

Ditto on that iggie. 

Hi beachboy

Ya, thats how I was about it too. It sounds like my skin is acting just like hers. The skin was my push to do this and the rheumatologist who told me about it causing skin issues. 

I guess if  i did not get treated I was told things are going to get worse as i age and not just skin. 

I hope she will somehow get some kind of push like I did.  The mavyret only 8 weeks with 95% cure rate. They check your labs once a month while on it.  The doctor said to me that he will see me after the 8 weeks . He said you wont have hep c anymore. 

For me I was so scared to do this but I needed to just jump in that cold swimming pool and  suck this up for my health. The doctors have been telling me for years, don't wait till your in your 60's and need a liver transplant. They see this so often they have told me. Getting cirrhosis and end stage liver disease or transplant having to stay on rejection meds the rest of your life has to be more painful and debilitating than taking these pills for only 8 weeks.

The treatments have improved 

Thanks for your encouragement. I've been terrified to do this from hearing stories about the old meds used. 

Yes the diahrhea issue . I had it last night after taking my first pills. I guess I should stock up on bananas to slow that down. 

 

Thank you! That is something else I should ask to be tested for because growing up in Missouri we used to get ticks  in our heads from playing in woods, creeks, etc... I can remember my dad used to spread the hair to expose the tick , light a match and blow it out and then set that hot match head on the tick and they would release and come out. 

Yes I've already started the mavyret. I went to the hepatologist about a week ago and the hospital had my meds approved by medicaid within a couple days which surprised me and had the first month worth shipped out to my home by FedEx from thier hospital pharmacy. Amazing! They are really on it.

Thanks Igge and you as well with all of your helpful tips and tricks. Actually i appreciate all of you. 

I pussy footed around with this virus for too long and now that I'm sick the ostomy thing was scaring me about the meds due to diahrhea and stomach upset  reported as side effects. But then I said to myself just suck this up I need to eradicate this virus. It will eventually kill me if i don't. All my doctors were pushing me hard this time.  

But ya, if I can show another anxious ostomate that needs treated that hey, I did it and I'm here still alive and share my adventure of the 8 weeks on the med. 

My wife has the same fear... the old "cure" side effects.  She just refuses to believe how different the new cure is.  

She is now 63.  Her liver enzymes are very high.  I warned her... livers fail quickly.  She just doesn't take it seriously enough.

Medical follies:

Back in the mid 1980's, before we were married, we had to take blood tests. We used my doctor.  I asked him to check both of us for "everything" even hepatitis, having just read about the various Hepatitis infections.  And since I had so many surgeries, I wanted to be sure I didn't have it.

Tests came back negative for anything.  We were both given a clean bill of health. 

About 3 months after we were married, we decided to take an adventure cruise on the Amazon river.  Due to the various South American countries we would be in, we had to visit a tropical disease specialist for vaccinations and preventative medicine before we left.  Also, we both took blood tests.  My wife's came back positive for Hep C with high viral load.  We were puzzled.  My regular doctor's test showed nothing.  We went back and confronted him.  He admitted... he didn't include a Hepatitis test in the lab order, he just figured we were young and OK.  Wow.  My wife was devastated.  She had no idea how she could have it   So.... she blamed me.  Even though I passed the second blood test.  I promptly was tested again... it showed I didn't have it.  Now she was even more upset.  She had really given me grief over this, thinking I was to blame.  That was 37 years ago.  

 

Ya. If her enzymes are high and her skin acting up she really needs to think serious about this. That means it's taking hold leading to worse. She will suffer far worse if the hep c gets her than the treatment.  I was just like her about it since  I found out. 

They said I also had a hep b infection but my body cured itself. Like a footprint it was there but gone now. And get this, the med I'm on even has a chance of Reactivating an old hep b infection. So I'm really taking. Chance. I'm willing . I trust the lord and prayed over it and I will  pray each night when i take these pills. 

By the way, pharmacist told me to take them before bed with a large meal so that the tired effect won't bother me. He was right I did  get really tired but I woke up feeling very refreshed. 

I have 2 old male friends , not boyfriends, just friends and they both have liver transplants now. I don't want to go through all of that. My first husband died because his liver rejected. 

Met a seventy year old in the waiting room. She was at stage 4 liver damage. She says I'll just die I'm not getting no transplant. I told her ,we'll. If your just going to suffer  to the extreme with cirrhosis then why not at least give it a try and do he transplant and live? She smiled and said yes. I told her about my friends and how they are doing well wirh thier transplants for years now. 

Also she's at the right place which is cleveland clinic. 

So  beachboy I certainly hope your wife will think more on this. Not to let it wait until it's too late. It's pills and only 8 weeks. 8 weeks of your life to save yourself alot of suffering and pain and a gruesome death. It does get worse.

I'm so sick right now and it's not from the one day of pills I took thus far. I been sick since february. It may not even be the hepatitis why I'm so sick but it's a crap shot for me. The doctors think it is. I just wanna feel better. I wanna work again.  I wanna go out and take walks and have energy again. 

I never thought I'd do these pills but I'm willing to do anything to feel better.

My current husband of 25 years got checked because I made him and he's clear thankfully but I think I'm going to tell him to get checked again because my skin has been bleeding all over the  place  in here. 

 

another thing I'd like to say is that I read bad reviews online and bad effects from the med which I should not have done. I spoke with the ccf pharmacist and he told me that the people in the trials were all at different stages and some had cirrhosis, some did not, each and everyone of them were unique and at different stages but that they have to report it. Its like if you have liver cancer and hep c they are going to tell you that you still have to treat the hep c. If you have cirrhosis you still have to treat the hep c. So that really helped me understand.  Most of the reviews were good. 

I'm working on getting her to consider treatment.  She thinks C can be ignored.  Fortunately she never contracted B.  I know it's a side effect of treatment; reactivation of Hep B infection.  

Hope all goes well with your treatment.  Post about your progress.  Hopefully in a couple of months you'll doing the  "I'm cured dance."

 

Thanks, will do. I hope she changes her mind and goes forward. I'll say a special little prayer for her.🙏

Day 3 on the pills and so far the only side effects are tiredness after taking the pill for about 2  hours, some real smelly ostomy poop in which reminds me of a babies diahrhea smell and a little heartburn and that's about it this far. I get these periods during the day that I almost feel high too like I'd taken a pain killer or a calming pill. Strange but ok. Nothing I can't handle and hopefully it does not go into other effects.  

 

Day 5 and same effects. If it stays this way then I was really afraid all for nothing. 

My ostomy output really smells like death though even with the M9 deoderant. That's not a usual.  Lol

It's OK though I'm not going to much anywhere except dr appts anyhow. It's worth seeing if I can beat this monster. 

 

Praying for no bad side effects and that you beat this thing :)

Thank you! Me too!

Thanks Hisbiscus for the updates.  My wife changed her mind..... is gonna do it.  She has genotype 1C. 

Going to use the name brand medicine, Epclusa.  I'm applying for a copay coupon from the drug manufacturer.  If I don't qualify for it, then $400 per 28 pill bottle, insurance picks up the rest.  

I've read quite a few posted reviews from patients who finished the treatment.  Some had few, mild side effects, others had more trouble.  All cured though.  Like everything else, we're all different.

 

I am so happy to hear this Beachboy! God listens.  I want your wife to live a good life.  Like anyone else with this disease. 

Would she qualify for the patient assistance program through the drug company to get it for free?  You've probably already been looking at everything I'm sure. I hope you guys can afford all that. It's a whole lot of money.

Google help with payment for hep c medicine and see if anything comes up to help. 

Without my medicaid I'd be paying $15,000. I'm a genotype 1A 

When will.she be starting? I'm doing the happy dance just hearing that she's going to finally get treated. 🕺

 

 

Came back after googling and I got this from American liver foundation and supplied link here for more info. 

Some of these places may have funding to help with co pays. 

https://liverfoundation.org/liver-diseases/viral-hepatitis/hepatitis-c/support-for-patients-with-hepatitis-c/

 

🔒 Login to see image

 

Thanks for the info.  She will be starting in about 2 weeks.  My insurance verbally approved.... I'm asking them to send a written confirmation to me.  

Hopefully she tolerates it well.

Your most welcome. That's great news she will be starting soon. Think positive. 

Today is the one week mark. At least according to my pills. Still same effects and no changes although I did feel really extra tired yesterday but I kept getting woken up. 

I feel very refreshed in the mornings. More so than before. 7 more weeks to go. 

My output is so smelly from this medication. M9 does not barely touch it  which reallly surprises me. Im.not sure if it's the med or the virus coming out of me or bile but it's pretty bad 

I was able to find out this med is absorbed mostly in the small intestine. 

Not sure if its this med or not but my hair has changed texture and breaking, thinning. This started last night after my shower. I did use a different shampoo, a build up remover, so i will use my usual and see how this goes but a whole lot came out. Scarey.