Big update - multiple procedures later ...

... I think it's FINALLY fixed!!!

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Big update - multiple procedures later ...

Postby SairButt » 06 Sep 2019, 06:05

Hi all

Long post coming up!

Haven't been on here for a long time. You can find my last post here:

As you can see, that was about two and half years ago. And was LIS #1.

I thought it had worked. I got about 2 months in and had a massive re-tear. Back to square one. I didn't post that on here so as not to put people off LIS. I just happened to be in the unlucky 5% who it didn't work for.

So, updates since then ....

Well, I had a flexible sigmoidoscopy at the same time I had LIS #1. This showed up a polyp so I had to go for the full colonoscopy. At the same time, the original surgeon also put me up for anal manometry tests. I'll keep these parts brief.

Anal manometry tests: All came back normal. The tests themselves were not too bad. The fissure had been problem free for a couple of weeks before them, and it was around 6 months after LIS #1. Pooping out the water balloon wasn't much fun, and I wouldn't want to do the tests with a newly opened/re-opened fissure, but they weren't too bad. Results for these were all normal.

Colonoscopy: As most people will probably tell you, the prep (MoviPrep in my case) is worse than the scope. They're right. My tips? Try and get an early scope so you're not taking/dealing with the prep overnight! I did the prep day before, one dose first thing, one in the afternoon. If you have a late scope, it's one in the afternoon, one at night. That would be horrendous! Main thing is have vaseline and wet wipes handy. And use them! You will ... a lot! The next morning, when you wake up, DO NOT FART!!!! I almost did, but caught myself in time. Good thing too! Results from that were good too. No further polyps and the one they did find was removed. Other than that, all fine. And I got to say hello to my appendix on TV. Which was nice. Amazingly, it didn't re-open the fissure, but it was a little sore for a day or two after.

So, pressure tests and scope were done and no lurking problems. So I was left with the same fissure that refused to heal.

This is where it got interesting.

The surgeon who did LIS #1 was not willing to do a second LIS closed. He insisted he would have to do it open. Much bigger cut, much worse healing. I did ask how much he cut the muscle first time round. He couldn't give me an exact number, but said he tended to be conservative. Which is fair enough. But he stuck to his guns on a second LIS having to be an open one. Or I could get a second opinion.

I took the second opinion.

New surgeon said he could do a second LIS closed. But would rather try some less drastic methods first. This seemed like a sensible approach to me so that's what we did.

February 2018: Had a fissurectomy to tidy up the wound (the edges were a mess due to the number of re-tears so not healing properly). At the same time, get some botox injections to help it heal. While he was in these, he also discovered I had a couple of fistulas trying to form so these were "opened up" as well.

Unfortunately, this procedure did not go well. I reacted badly to the botox. The recovery period was horrific. Had the worst flare up of piles and swelling I have ever seen. Now I've had pile before, I know what they're like. But this was off the scale. I pretty much struggled to walk for about 2-3 weeks. Ended up having to use proctosedyl for several weeks to try and take the piles down. The full recovery was around 2 months. And it didn't work. I started re-tearing almost straight away. My advice? If you're considering botox, ask for a test injection first. See how you react to it. Apparently, my reaction is not common. But it can happen. Why they don't do a tester first is beyond me.

The biggest downside to all this, once it all healed up, was the skin tags it left behind. One was especially bad from the most massive external pile. This one would get very red, and very irritated, every day. I had to keep it lubricated constantly to reduce the inflamation (due to chaffing) as much as possible.

After a couple more visits to the same surgeon, decided a second LIS was the only option left.

Things went a little off track at this point. I'm in the UK. And was having this done on the NHS. But it's not surgery they do every day, so you expect to wait a while for it (3-6 months generally where I am). But paperwork got messed up somewhere, I dropped off waiting lists, and everything took WAY longer than it should have.

In the end, I opted to pay to have it done privately. Same surgeon, as they split their time between NHS and private in the UK. Cost £2k in the end. That was as a day patient in a private hospital. That covered the surgery (closed LIS + tag removal), medication and the follow up appointment.

June 2019: Second LIS (closed) and tag removal. This was probably the easiest recovery of the three procedures! If anything, the tag removal caused the most pain during it. But it was never terrible. I did have to wear liner pads in my underwear for the first week or so but it was pretty much a breeze after that. The main difference this time was it felt much easier to poop. Things didn't feel as tight. It turns out that this was due to LIS #2 being a full section! He took up past the end of the fissure, to the detente line. I asked for this as this seems to produce the best results in persistent ones like mine. In order to go up that far, it had to be a full section. I now no longer have an internal sphincter muscle! (Well, I do, but it's been cut right through so it doesn't do anything any more ...)

The net result? I *think* it's finally fixed!

It took a while (2.5 years since first surgery and many years of occasional rips prior to that), but it's done.

It's been almost 3 months since the second LIS and I haven't been this pain free, and confident it'll stay that way, for years! I had the follow up appointment with the surgeon, and he thinks it's looking good.

The tag removal was worth it. Was quite painful during recovery, but doesn't get irritated on a daily basis now.

Medication, lifestyle and diet wise ....

I take a teaspoon of raw, cold pressed, coconut oil before breakfast, and another before my dinner.
I take around 5ml of Lactulose after my dinner.
Haven't really eaten red meat for the last couple of years. Lots of fish, some chicken.
Plenty fruit + veg.
Drink a minimum of 1.5L of liquids daily.
Minimal dairy, minimal alcohol, minimum junk like cakes + sweets.
Use a squatty potty!!! They are brilliant. I have a permanent one in my bathroom and a folding one for holidays!

I plan to slowly reduce the Lactulose intake (I'm down to 5ml once a day now, I was on 3x5ml doses previously) with a view to stopping it by the end of this year. The coconut oil I'll continue to take long term. I only added that fairly recently, but it seems to help a lot. I'll probably stay off red meat, I don't really miss it! I'll also keep using the squatty potty long term.

So, don't give up. If you persist, you'll get there in the end.

And don't be afraid of LIS surgery. I've now had a full section and I don't "leak". I fart more than before, and they can be big raspberry farts, but I can live with that.

Think that's everything? Any questions, feel free to ask. I can provide details of the surgeons I used if anyone wants them. I'm in Edinburgh in the UK. My final op was done at Spire Murrayfield.

(Final tip - If you are typing up a long post like this, take a copy and dump it in NotePad or something before you post or preview it!!! I did, thankfully. The forum had logged me out and I would have lost the lot if I hadn't!)
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Re: Big update - multiple procedures later ...

Postby Ayurveda » 18 Nov 2019, 01:23

Thank you sairbutt
That's a nice success story.
I really like your follow up diet and I plan to get a squattey potty.
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