Navigating Hep C Treatment as an Ostomate: A Personal Journey

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60
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502
Hisbiscus
Jun 08, 2024 1:57 am

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

I found out I had Hep C in the mid '90s 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 vitamin C deficiency, that the Hep C can also cause skin problems, although the hepatologist felt it was more likely from the vitamin C.

I figured, okay, I'm sick and can't work. Can't 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 that's 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 an upset stomach and diarrhea.

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 their story of how their body handled the treatment with the ostomy. Also, can message to stay private if they wish.

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

 

 

 

 

 

Beachboy
Jun 08, 2024 5:33 am

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

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.

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Kas
Jun 08, 2024 10:47 am

Good morning!

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

 

 

warrior
Jun 08, 2024 12:24 pm

@ Hibiscus, a while ago you and I were discussing your immediate allergic reactions and I mentioned a friend had a similar thing going on and I would ask him about a diagnosis.

Saw the friend. He also has Lyme disease.

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

Anyways, I didn't forget about asking him and telling you. Wanted to give you this though.

Do take care.

Beachboy
Jun 08, 2024 12:43 pm

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 about 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
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Beachboy
Jun 08, 2024 12:52 pm

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

IGGIE
Jun 08, 2024 1:04 pm

G-Day Hibiscus, 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 for saying you will help others if they get the same prognosis. You're a special lady, Hibiscus. Regards, IGGIE

warrior
Jun 08, 2024 1:39 pm
Reply to IGGIE

Ditto on that, Iggy.

Hisbiscus
Jun 08, 2024 2:12 pm
Reply to Beachboy

Hi Beachboy

Yeah, that's how I felt 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 is only 8 weeks with a 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 won't 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 until you're in your 60s and need a liver transplant. They see this so often, they have told me. Getting cirrhosis and end-stage liver disease or a transplant, having to stay on rejection meds for the rest of your life, has to be more painful and debilitating than taking these pills for only 8 weeks.

The treatments have improved.

Hisbiscus
Jun 08, 2024 2:16 pm
Reply to Kas

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

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

Hisbiscus
Jun 08, 2024 2:19 pm
Reply to warrior

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, blow it out, and then set that hot match head on the tick, and they would release and come out.

Hisbiscus
Jun 08, 2024 2:23 pm
Reply to Beachboy

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 of days, which surprised me, and had the first month's worth shipped out to my home by FedEx from their hospital pharmacy. Amazing! They are really on it.

Hisbiscus
Jun 08, 2024 2:29 pm
Reply to IGGIE

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

I pussyfooted around with this virus for too long, and now that I'm sick, the ostomy thing was scaring me about the meds due to diarrhea 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 yeah, if I can show another anxious ostomate that needs treatment that hey, I did it and I'm here still alive and share my adventure of the 8 weeks on the med.

Beachboy
Jun 08, 2024 3:23 pm

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-1980s, 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 a 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.

Hisbiscus
Jun 08, 2024 5:56 pm
Reply to Beachboy

Yes, if her enzymes are high and her skin is acting up, she really needs to think seriously about this. That means it's taking hold, leading to worse conditions. She will suffer far worse if the Hep C gets her than from 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 medication I'm on even has a chance of reactivating an old Hep B infection. So, I'm really taking a 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, the 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 two 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 was rejected.

I 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 a transplant." I told her, "Well, if you're just going to suffer to the extreme with cirrhosis, then why not at least give it a try and do the transplant and live?" She smiled and said yes. I told her about my friends and how they are doing well with their 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. Eight weeks of your life to save yourself a lot 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've been sick since February. It may not even be the hepatitis why I'm so sick, but it's a crapshoot for me. The doctors think it is. I just want to feel better. I want to work again. I want to 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.

Hisbiscus
Jun 08, 2024 6:04 pm

Another thing I'd like to say is that I read bad reviews online and bad effects from the medication, 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; some had cirrhosis, some did not. Each and every one of them was unique and at different stages, but they have to report it. It's 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.

Beachboy
Jun 08, 2024 8:50 pm
Reply to Hisbiscus

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 be doing the "I'm cured" dance.

Hisbiscus
Jun 08, 2024 8:53 pm
Reply to Beachboy

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

Hisbiscus
Jun 09, 2024 11:58 pm

Day 3 on the pills and so far the only side effects are tiredness after taking the pill for about 2 hours, some really smelly ostomy poop which reminds me of a baby's diarrhea smell, and a little heartburn, and that's about it thus far. I get these periods during the day when I almost feel high, too, like I'd taken a painkiller or a calming pill. Strange, but okay. Nothing I can't handle, and hopefully, it does not lead to other effects.

Hisbiscus
Jun 12, 2024 12:22 am

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 deodorant. That's not usual. Lol

It's okay, though. I'm not going much anywhere except to doctor appointments anyhow. It's worth seeing if I can beat this monster.

DexieB
Jun 12, 2024 3:46 pm
Reply to Hisbiscus

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

Hisbiscus
Jun 12, 2024 7:22 pm
Reply to DexieB

Thank you! Me too!

Beachboy
Jun 12, 2024 9:05 pm

Thanks, Hibiscus, for the updates. My wife changed her mind... she is going to 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 it's $400 per 28-pill bottle, and 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, while others had more trouble. All were cured, though. Like everything else, we're all different.

Hisbiscus
Jun 12, 2024 9:55 pm
Reply to Beachboy

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. 🕺

 

 

Hisbiscus
Jun 12, 2024 10:46 pm
Reply to Beachboy

Came back after googling and I got this from the American Liver Foundation and supplied a 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

 

Beachboy
Jun 12, 2024 11:31 pm

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.

Hisbiscus
Jun 13, 2024 12:28 am

You're most welcome. That's great news that she will be starting soon. Think positive.

Hisbiscus
Jun 13, 2024 2:15 pm

Today is the one-week mark, at least according to my pills. Still the 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. Seven more weeks to go.

Hisbiscus
Jun 14, 2024 5:22 am

My output is so smelly from this medication. M9 does not barely touch it, which really surprises me. I'm 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.

Hisbiscus
Jun 16, 2024 1:33 am

Not sure if it's this medication or not, but my hair has changed texture and is breaking and thinning. This started last night after my shower. I did use a different shampoo, a buildup remover, so I will use my usual and see how this goes, but a whole lot came out. Scary.