LIS...so many questions!! Scared, nervous wreck.

Can't completely heal, need advice, considering LIS

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LIS...so many questions!! Scared, nervous wreck.

Postby Severelydepressed » 16 Mar 2016, 08:55

Hi friends,

I've been suffering from an AF since September 2015...so about 7 months now. It's been really rough as you all must know - completely changed my overall quality of life. I was on Nifedipine and Miralax for 13 weeks and things seemed to be looking up. I was able to have a BM without pain. I slowly weaned myself off the Nifedipine and then finally the Miralax, but after a month the sharp pain came back with a little bit of blood and continuous feelings of stretching during a BM. This is when I realized this little sucker's not gonna heal on its own and it has completely crushed my spirits coming to terms with that. I am mentally drained, fed up, angry, depressed, suffering from panic attacks again and it's really put a hold on my life! My life revolves around my fear of this...my life revolves around glorifying the happier days pre-AF. I never realized something like this could happen and change my life in an instant. It's really taught me not to take life for granted at any moment and I wish I could just be given the chance to have my life back :(

Anyways, I went to see a new CRS a few days ago. He said he wanted to do a colonoscopy first just to rule out everything else, which I have scheduled for next week. I am scared about the prep and of course the procedure making the AF worse, especially since right now I am back on the Nifedipine and Miralax and am not in much pain.

BTW, when my fissure returned, I did not/do not have the same spasms as I did the first time around. It hurts to go and I can feel a cut/sharp sting/stretching. However, after I wash up using my Tuck Pads and warm water, I do not have any spasms or pain throughout the day. Sometimes I can feel the cut if I move a weird way, but otherwise no pain after the BM movement. Like I said, I jumped right back on Nifedipine and 1/2 dose of Miralax. I am grateful for this but hate that this is always something I will have to worry about and deal with. Really don't want to be on Miralax long term. I haven't even been able to exercise due to fear of the fissure acting up as well.

So with that said, I am strongly considering LIS surgery. The CRS I saw could not even complete a digital rectal exam the other day because I was so tight and crying from pain when he tried. I felt that he was a little rough and that annoyed me but he has good reviews and was also recommended by my PCP so I am trying to have faith because he is already my 4th gastro/CRS. He seemed a little hesitant about the surgery and said that he wants to do the colonoscopy first and then come up with a plan of what to do. He did seem to have some reservations because I am a woman (27 yrs old) and haven't had kids yet...Told him I don't have spasms, just cutting pain during BMs. He says he sees one or two fissures? But says i'm extremely tight.

He says he performs about 20-30 LIS surgeries in a year, but says he has done hundreds of them. Is that enough? What do you guys think?

My top concerns:
1.) Will this affect me having children and cause me any issues afterwards? This has derailed my plans of starting a family and is making me very sad. Trying really hard not to overthink it.
2.) Incontinence
3.) Infections
4.) Going through all this pain just to have surgery not work...

I have also heard about the Dr. Feingold's Kenalog procedure and was thinking of going for that since I'm in the area. But the Kenalog steroid injection seems to cause menstrual irregularities in women and that terrifies me.

Please...any advice and input would be much appreciated. Sorry for the jumbled post..!!
Thanks so much. No one knows about this except you guys, my CRS, and my dear husband who has been a trooper. Holding me and calming me when i am on the verge of a mental breakdown and always having to hear me talk about my butt issues. Its made us ALOT closer....lol...but at the same time I really don't want to burden him. He says he won't let this break us, but I feel incredibly guilty that he has to go through this with me when he has a perfectly healthy butt!! I don't know what I'd do without him. I just want to be able to move on with my life. I want to be able to go out and enjoy things without having this constantly be in the back of my mind. It wears on you so much...I'm sure you all know.

Thanks guys....
:lovebug:
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Re: LIS...so many questions!! Scared, nervous wreck.

Postby Canadabum » 23 Mar 2016, 16:45

S.D....you may have already had your colonoscopy...if so, how was it...if not, i personally wouldn't worry too much about the procedure if you are going to be sedated. You will be relaxed and your sphincter muscles will likely be able to deal with the procedure with no problems at all...just tell the doc to be gentle and that you are concerned about causing any further damage.

As for what you should do -- my thought is you need to really listen to your own body while consulting a physician that you trust. If surgery is the decided path then that is a great decision...if it is not then that too is a great decision. It all depends on where you are at in the recovery process and the medical advice you receive from a trusted doc.

As for potential concerns -- i have never heard of an AF preventing anyone from having kids...dont think you need to worry about that. Incontinence is a risk that everyone who does the surgery accepts...again, you need to weigh the risk with your own personal situation. That said, the risk is quite low. Infections...same issue. Most infections can be dealt with using antibiotics or using proper cleaning techniques. The last concern...yup, we are all concerned that all our efforts and procedures wont work....but really, that is not in your hands and that outcome is also not the norm. Most who have the surgery do quite well with it so long as they use a qualified and good doc and follow proper care procedures afterwards.

We all tend to get ourselves scared s%^tless (pun intended!) when thinking about all the possible bad outcomes -- but thinking about them does not mean they are going to happen...in fact, we all probably focus on the negative far more than we should.

i hope some of this is helpful...good luck with your decision and keep us posted.

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Re: LIS...so many questions!! Scared, nervous wreck.

Postby Severelydepressed » 28 Mar 2016, 12:06

Hi CB, you have always been someone on this board who has always been so very helpful. Thank you so much as you don't know how much it means to me.

Update:
I had my colonoscopy and my fissure was confirmed. I also have one hemorrhoid, which he thinks was caused by the fissure. Everything else was ruled out, so I am very grateful for that. I am meeting with the chief of CRS at different hospital tomorrow to discuss LIS. The pain has gotten worse after the colonoscopy and it doesn't seem to be getting better no matter what I do. The methods that worked for me the first time with Nifedipine/Miralax/good diet/plenty of water is not helping or making a dent this time. I am just about ready to give up as I'm currently still in pain after this morning.

How can I feel so numb mentally and in pain at the same time? I'm so over this whole thing, it's ruined my life. Trying really hard, but I just don't even want to live anymore if this is what life is gonna be like.
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Re: LIS...so many questions!! Scared, nervous wreck.

Postby Canadabum » 28 Mar 2016, 21:33

SD - glad to hear that you have ruled out a bunch of potential issues...and great to hear that you are meeting with a qualified CRS. Sounds to me like you are leaning towards a procedure...whatever you decide good luck.

We all go through periods of feeling real mental anguish over this condition. It is just so bloody painful and has a way of taking over your life...don't let it!! Do yourself a favour and keep a journal where you write down one good thing about your day - the smell of a flower, 5 minutes of no pain, the taste of an orange...and go back to your journal each day to remind yourself about all that is still good. I honestly understand your feelings...when the pain is there it can feel so hopeless. Remember that many on this board have endured the same pain and gotten through to the other side...you I know will do the same. Take it one day at a time, one moment at a time.
Your meeting with the CRS will take you one step closer to whatever resolution you choose...so that is great, you are on the right path.
...and don't stop letting us know how you are doing. We are all here for each other.
All best - Canadabum
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Re: LIS...so many questions!! Scared, nervous wreck.

Postby LorraineJ » 15 Jul 2016, 13:14

Could someone confirm if Severelydepressed is still a user on this site? I tried to PM her, but it wouldn't go through. I am concerned. Also, I wanted to share my Dr. Feingold experience. It saved me from my life of tremendous pain. He is an excellent doctor...my angel!
Severelydepressed!... come back!!
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Re: LIS...so many questions!! Scared, nervous wreck.

Postby Savaici » 16 Jul 2016, 03:55

Have a look a SD's posts and you will see that she is one of our VIP members and is healed last time I heard, which is why she probably does not check in quite so often!

member/Severelydepressed/posts/
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