Surgery on 6/10

Really scared, but out of options

Are you having, or have you had a Lateral Internal Sphincterotomy (LIS)? Please share your experiences here, or ask any questions.

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Re: Surgery on 6/10

Postby StarrySky » 05 Nov 2020, 11:40

Update:

Saw a colon and rectal surgeon at UC Davis Hospital yesterday. Overall, it was a very nice experience. She was very knowledgeable and very sweet and thoroughly listened to my problems, although I'm not sure how much help it was.

However, I am not sure what to do. She didn't have an answer as to what might be causing my problems, but thinks the LIS I had may not have cut the muscle enough. I find that hard to believe. The CRS I had do it actually has more experience than her (30+ years and board-certified... she is 20 or so) and it is his most common surgery. When he checked my muscle last time, he said it was fine and nice and relaxed and didn't think that was the problem. He told me he knows exactly how much to cut due to years of experience and only had one failed surgery in his entire career out of doing thousands of these where he didn't cut enough. I find it very hard to believe that he didn't cut enough...

It doesn't help that the new CRS does not know the CRS who did the LIS (he is located over 50 miles away and is in a different medical system, so you can't expect all surgeons to know each other).

When she tried to examine me (just the outside), she said it looked tight. I was very nervous, so that didn't help, plus it was freezing in there, so I tend to clench up due to that. I don't think that means the LIS failed. I'm pretty sure you need to actually stick your finger in there to know that (that's what my other CRS did). I no longer get the horrible spasms I did before; it's a skin problem. I told her that and what my CRS said about the skin being very cracked, fragile, and thin, but I don't think she got it. : (

She wants to do an exam under anesthesia to get a better look and possibly do botox. : ( I have not heard good things about botox... it has failed for so many people on this forum and on other forums I've been to, with people having to get multiple rounds and then it not doing any good even after all that. Plus, I don't think my insurance will cover it. She doesn't want to do another LIS unless she absolutely has to.

Ugh, I am so confused right now. : ( I just don't know what to do. She isn't familiar with these breast cancer drugs, although she does say they could be the cause of my issues since the problem started with them.

I am very upset right now and don't know what to do. I really don't want to undergo another surgery or multiple surgeries. Botox is not as effective as LIS and mostly the same as the ointments from the research I've done, so maybe I should just continue with the ointments for now or try the Nitro I was prescribed first by the dermatologist.

How common is a failed LIS? Is Botox really that effective? She said the side effects of the botox are not that bad and recovery is quicker than the LIS. Is that true? I don't know who or what to believe anymore.

My gut just tells me the LIS was fine and that muscle tension is not the issue. Everything started with that damn Tamoxifen drug and then the Lupron worsened it. Ugh... I need to think about all this some more before I decide and research more.

Sorry for the rant. Appreciate anyone listening to me. This has just been the year from HELL and I am so fed up with everything (seeing doctors, putting creams on my a*s, procedures, medications, etc). :cry: I want this all to be over!!
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Re: Surgery on 6/10

Postby chachacha » 05 Nov 2020, 12:23

I'm so sorry to hear that your experience with the new doctor wasn't what you had hoped it to be. I know VERY well how frustrating it is to deal with a medical condition that is even slightly unusual, and so many doctors can only handle the "usual" presentations and can't think outside the box or have the time to do the research work for individual patients. I am experiencing a similar situation myself right now and understand how emotionally draining it can be. I'm sure that I can get back to full health, but my situation is so terribly complicated and so hard to figure out. I see several specialists, but they only know their own corner of the room so I'm the one doing the research and bringing them the information, but they often question it because I'm not an MD and may not agree with the current treatment model, even though more and more doctors in the field are on board. But even with all of my own work, I'm still at a loss because the situation is so spread out. Sorry to vent on your thread, but I just wanted to say that, "I hear you!". I wish that I could offer more concrete advice, but I am always here to listen and wish you luck with your next step. I also agree with you that it probably wasn't the LIS, and I also probably wouldn't do the Botox either, if it were me.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
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Re: Surgery on 6/10

Postby StarrySky » 05 Nov 2020, 17:15

Thank you, chachacha. It is indeed very frustrating. : ( I am so tired of seeing all these specialists and them not having any answers. I am just so through with all this.

I have one more specialist appointment next week (with a gastroenterologist), so I will see what he says. Again, though, I am not very hopeful. There has to be someone out there that can help me. I don't think I want to see another colon and rectal surgeon after all this. I don't know how much more they can help. UCSF might be worthwhile, but due to Covid, I can't see anyone there right now anyway.

I just don't think it is the LIS. It feels different in the area (not nearly as tight), so it can't be that. I just get pain because the skin is still very sore and raw due to the constant tearing. Plus, it just never healed (and this was right after the LIS when the muscle was loosest).

I read more about Botox and it just doesn't have a high success rate. I really don't see the point. I've read about soooooo many people online that got it and it failed. Some people got it multiple times and it still failed. I just don't know if it's worth it. Plus, both CRS's I saw (before this one) said they do not offer it because it's not very effective and is very expensive. So what's the point??

I feel like just quitting the Tamoxifen drug and seeing what happens. It's a risk, but I don't know what else to do right now. The Lupron is still not out of my system and my hormones are still messed up (still getting hot flashes and still have no period).


Ugh... I'm just so disgusted! :cry:

I really hope you find answers for your issues, as well. *hugs* I hope both of us can find some relief and some answers very soon. I wish you the best with everything.
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Re: Surgery on 6/10

Postby chachacha » 05 Nov 2020, 17:29

Thanks. And fingers crossed for an answer from the gastro.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
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Re: Surgery on 6/10

Postby StarrySky » 13 Nov 2020, 14:26

Small update:

The PA dermatologist I saw gave me the wrong formulation of Nitro (they gave me 2%, which is WAY too strong for fissures according to the pharmacist). So, it needs to be compounded. Then she gave me a prescription for Rectiv, which I obviously cannot afford. It would be $600 out of pocket, which I can't afford and isn't worth it since this probably will not work for me anyway. I may not even be able to tolerate the side effects. I am going to see the gastro on Tuesday and see what he says. Maybe he can prescribe the Nitro in compounded form.

I have not heard back from the surgery center, which is honestly fine right now since I still don't know what to do. However, with possible lockdowns happening again due to Covid, I have a feeling they will not be doing any outpatient procedures for a while, which is what happened a few months ago. So... I'm stuck waiting again. : ( I really want to just try this Nitro ointment, but it is taking me so many hoops to jump through. It's honestly ridiculous. And shame on that company that makes Rectiv charging that ridiculous amount of money for their meds! Making tons of money off people who are suffering!! Just awful!!

I have researched more about Botox and it seems to have the same efficacy as the ointments. It has only helped and totally cured a few people from what I've read on other forums. : ( Is there anyone on here who has had success with it? I am honestly very dubious about it. Studies do not look promising and that's probably why the two CRS's I saw previously did not do it.

I may just go back to the CRS that did the surgery and ask his opinion on all this. I really don't know what else to do...

Hopefully I can at least get the proper formulation of this Nitro ointment next week.

I'm worried the gastro will want to do a colonoscopy. : ( I don't know if I could handle that with all my cracks and tears. How awful is it? I don't want to make things even worse. Thing are hellish enough as is!

Sorry for my rant, but I am frustrated and confused about what I want to do next. Of course, with lockdowns possibly imminent again due to Covid, that doesn't help things.

I hope everyone is doing better than me. Sometimes I just really hate my life. Suicide looks more promising than dealing with this problem for the rest of my life... and that scares me. Maybe I should just quit my other medication and be done with it.
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Re: Surgery on 6/10

Postby brent1981 » 20 Nov 2020, 01:43

Hi StarrySky. I am totally new to the forums, and this is the first thread I've read through. Just wanna say I feel your pain (literally) but I think you might have it a bit worse than I do. I am in the exact same position as when you started your post. I really want to get surgery for this. It's kind of scary and sad that it hasn't fixed you up totally. It makes me realize how truly horrible this condition is for all of us. I don't really have much more to say than I feel for you and really wish you a real recovery someday. I had no idea this was such a common problem in the world. I have no idea why I have anal fissures... I am just a normal guy who I think just lives a normal life. I've never done anything I know of to get this. And sometimes I wonder why I've been "chosen" with this stupid health condition. It just sucks so much. But yeah, it's nice that this forum exists for us to all support eachother. I know what you mean about thinking about 'ending it' and stuff. I've never even had the slightest thought of suicide, but I too have thought about it a couple of times and it saddens me to say that because I really love life. I figure I'll just pain through it though. But it's tough, since you never know how much pain you can really take.

But I think what we all need is hope. It's really tough, but I am trying to have hope. I am literally tearing up as I type this. Anyways, I hope you get well sooner than later.
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Re: Surgery on 6/10

Postby StarrySky » 21 Nov 2020, 11:21

Thank you, Brent. It has truly been hell. And I'm so sorry you are suffering through this. I wouldn't wish ANY of this on my worst enemy. It is really life-destroying. My thoughts of suicide have gone up dramatically the past year. I can't find a light at the end of the tunnel and that scares me. This has honestly been worse than everything I went through with breast cancer over a year ago (chemo, surgery, radiation, etc), mainly because it just doesn't seem to want to end and I fear using the toilet every single day. I am just lost and don't know what to do anymore. I see a therapist, but they don't understand it and can only do so much. I find the support of this forum (and others such as reddit) much more helpful.

I really hope you find the answer to your issues. My issues are most likely related to the breast cancer drugs I'm taking, which are thinning my skin in that area, so my situation is complicated. The surgery works for 90+% of people, so I wouldn't worry about that. I'm a rare case. *sigh* So, if you need surgery, don't be afraid. It's really not that big of a deal. I've been through a lot in my life already (only 37) and the LIS surgery was not a big deal. It helped the spasms, but did not solve the skin problem. I will be going back to the CRS that did it in December and asking him his opinions about possible Botox and if there's anything else I can do. I might do a colonoscopy, too, just to rule any digestive issues out (although he didn't seem to think I needed it since I don't have IBD-related symptoms).

I really hope you find an answer and, if you get the surgery, I hope you heal 100%! Thank you for reading my story and I wish you the best. : )
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Re: Surgery on 6/10

Postby brent1981 » 23 Nov 2020, 00:10

So, after reading your situation, and how the pain is so bad, it made me think of some stuff I read on the internet about curing anal fissures.

Apparently they can totally remove a lot of the sphincter and it sounds like that would get rid of the pain for good. The only downside is that you would not be able to control holding in a bowel movement.

In my opinion, and having suffered myself (though not as much as you), I had already considered this for myself. As in, I thought, more as a 'what if.' But really, if you think about it, simply not having the sphincter there would be like... heavenly. Not feeling pain? Even if you cannot control the bowel movements, I don't think it's so bad, depending on your lifestyle.

I don't know much about your life, but for me, I work from home a lot. My bowel movements are ALWAYS at the exact same time in the morning... very rarely after 11:00am. I get one right after getting up, another about 1 hour later, and an optional third an hour after that.

So if I were to not be able to control it, I'd be able to get to the bathroom right when I know it's time. If I were out and about, or working in an office, I know this sounds bad, but hey, an adult diaper would sure as hell beat this (insert expletive here) pain. Nobody would notice, and if they did, I'd have no trouble telling them I had major surgery there. I don't think it would be such a negative thing in comparison to the pain.

What are your thoughts on getting a super dramatic surgery that just eliminates the thing causing you all this pain? Rather than expect it to heal? Maybe it could allow you to appreciate life more.
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Re: Surgery on 6/10

Postby StarrySky » 30 Nov 2020, 18:57

brent - I am sorry for the late reply. Been very busy and have not felt up to being online much. I have had a lot of pain recently and it's hard to talk when I am like that.

I really do not want to lose control over my bowel movements. Honestly, the muscle is not the problem for me; it's the skin. My CRS said the skin is very thin and fragile. The muscle is relaxed now and I can feel that; it's just the skin that keeps tearing because it's so thin. So, I don't think more surgery would help me. I would honestly rather get a colostomy with my condition because then you don't have to poop at all through that area. Then maybe I could finally heal. Honestly, though, that is very drastic and I won't consider that unless everything else fails.

My GI wants to do a colonoscopy. I am afraid to do that. Has anyone undergone that here with active fissures? It seems like a bad idea. But, I don't know what else to do. It might or might not reveal something. My previous CRS told me he didn't see the need (actually, TWO CRSs told me that, since I don't have IBD symptoms). Ugh... I don't know what to do.

My GI told me to go back to the CRS who did the surgery and ask him before I decide on Botox. He didn't seem to think it was a good idea. So, that's what I will do.

Brent, I hope you are doing better. Hang in there. I am the rare exception to this; most people heal and eventually move on with their lives. I will get there... I am just running into problem after problem and doctors just don't seem to know what to do with me. : (

I still think it is related to the breast cancer drugs I'm taking. I was so happy and feeling great last year before starting the Tamoxifen. Then everything went to hell. So, it seems obvious to me that is the culprit. It is just hard to decide to quit it when it reduces recurrences so much. I am scared and want to consider other options before I go that route. I am still getting that Lupron drug out of my system. No period still and still get hot flashes. : ( It really messed up my system. Ugh, I HATE all this crap!
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Re: Surgery on 6/10

Postby missy moo » 03 Dec 2020, 14:43

I've had botox twice an I don't regret it because it has improved my quality of life it hasn't cured me I still get flear ups every few months but I would recommend anyone to give it a go it can't hurt and who knows you mite be one of the lucky ones who gets cured by it. Good luck an you deserve to be free from medical issues my thoughts are with you.
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