Thinking about LIS

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Thinking about LIS

Postby howtobepositive » 22 Apr 2013, 19:06

First things first. I am new here and have read a few topics and seriously appreciate the admins and moderators for putting this together, you guys are awesome!
Now here is my story:
Have been struggling with AF since 2009 on and off, between summer 2009 and winter 2012 i had them 3-4 times but each time they were pretty minor and went away with the use of either proctosedyl or diltiazem. My eating habits werent that great throughout that period and there was a fair amount of stress but they didnt bother me much other than a little bit of constant discomfort with the occasional flare up.
IN November 2012 I had a cosmetic surgery due to which I had to take pain killers and other medication or may be it was the anaesthesia.....but something caused my BM's to swithc back and forth between constipated and loose. That opened up a pretty bad fissure.
In the beginning I thought it will go away with proctosedyl which is what my doctor gave me, i used it diligently for 2-3 weeks but the pain was getting worse day by day, for some reason this time it wont budge and the pain got so excruciating, it was like broken glass passing through and then for approx. 8 hours afterwards BM.
I went back and asked for diltiazem, it fixed the problem in a week and i thought ok im back to good but one bad BM a few days later and boom its back and back with a bang, this time even worse. So i go back to using diltiazem but to no avail this time....
At this point I was sent to see a specialist, this specialist is not a CRS, he is a general surgeon but has colon related issues as his speciality and very well recognized in the area I live in. This specialist got me using Nitoglycerin which gave me some comfort within 2 weeks. This is the Christmas holidays time and I had a lot of time to rest so I was feeling good. However as soon as I had to go ack to work it started going back to being really bad - by this point I am into January 2013 but the there still is considerable pain and actually pushed me to take time off work.......Another thing Id like to mention is during January 2013 work was crazy stressful!
Since then I have been using nitro religiously and constantly increasing the number of times i use it in a day to 6 right no and also taking sitz baths every day - 2-4 times. Also I have been very good with my diet since then, avoiding coffee, alchohol, drinking lots of water, metamucil clear, eating lots of salads and whole foods. However, its healed to a certain point and then plateaued, it just wont go the final lap. I wont lie it gives me a lot of stress not being able to do what I want with my life for like 4 months now and being dictated by a stupid AF!
Also, I had 100 units of botox approx. a month ago which helped temporarily but has seemed to worn off......
Though the pain is under control now and I can do most things, here is the part that gives me a lot of stress and actually pushing me towards anxiety and major stress. I am scheduled to undergo surgery for one of my kidneys to be removed in approx 4 months. Now I am not sure if I should go for the LIS now or let it be. Because my last surgery which was pretty minor caused this to flare up, what would a much bigger surgery do? But on the other hand, I dont want to go through LIS unless I really need to......afterall there is a risk of incontinence and how life would suck if one got that??
Also, with the AF I cant exercise much which is something I should be doing to get in shape before my kidney surgery. So I am just confused, whether let it be and go through with my kidney surgery or to have LIS done and my colon in good shape? Another thing that I keep thinking about is that if I get the LIS done now, is there a chance that the AF will reappear anyways? Maybe I should just get more botox close to the time of my kidney surgery so that my sphinctr isnt going nuts even if I do get constipated...
So between the AF and my big surgery coming up, I am so uncertain, confused, stressed, helpless......
My specialist says that surgery is a last resort and in my case we dont really need it and that even having used nitro for 3 months, that is the best way to go ahead. He also said that the AF will likely get worse when I go through with my kidney surgery but it should improve relatively quickly afterwards with using nitro. But honestly I am scared of having to deal with two major things at once, I dont have enough confidence in my body to do that......
Let me know what you guys think. I really appreciate any replies and good luck to all the fellow sufferers!
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Re: Thinking about LIS

Postby jdhouseholder » 22 Apr 2013, 20:15

Sorry to hear you have been suffering with this for so long! I had LIS a year ago, had many pain free days until recently when I retore due to a hard BM. I will tell you that since having LIS my time with the initial excruciating pain was not as long as before LIS. It is manageable. I am going for Botox Thursday to hopefully help this devil to finally heal, if not I'm looking at a second LIS. The surgeon did tell me he was pretty conservative on my cut. In saying all this, if you are having terrible spasm pain I say do the LIS now. It will help with that tremendously. Just be sure when you have your kidney surgery to increase your miralax to combat any constipation due to pain meds. LIS did give me my life back and now I just have to deal with these setbacks as they come. Hope this has helped you some! Good luck and keep us posted on what you decide!!
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Re: Thinking about LIS

Postby howtobepositive » 23 Apr 2013, 02:10

Thanks for the quick reply jdhouseholder. Yeah I have heard good things about the LIS, its just that Im crap scared of going under the knife and because I have a big one coming up, I really dont want to do it unless I have to and where I am at with is that I could get by with management but just the thought of what might if the AF flares up after my kidney surgery gives me nightmares.........
On that note, did anybody here or someone you know actually run into an incontinence problem due to LIS, my specialist has me scared about that too.....
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Re: Thinking about LIS

Postby owmybum » 23 Apr 2013, 02:20

Sorry to hear you have so much going on right now howtobepositive. You must feel super anxious and stressed.
I would probably lean towards getting a second shot of Botox for now, along with mirilax to keep your bms nice and soft.
I think you have enough to deal with. Maybe all the rest after your kidney surgery will help your af to heal too.
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fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
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Re: Thinking about LIS

Postby thisfissurecankissmybutt » 23 Apr 2013, 20:05

Here is my two cents: Personally, I would have the LIS. I had LIS this past summer (along with a fistula repair) and the surgery and recovery really was a breeze. I kept asking myself, "Why didn't I do this sooner?" The success rate for LIS is very high, and the risk of incontinence is really low (assuming you are not in a high risk category). However, I would DEFINITELY recommend you have the LIS done by a colorectal surgeon (CRS) and not a general surgeon, even if he does specialize in colon related issues. You really do want someone that has extensive training and experience in this area.
Personally, I wouldn't want to have to worry about my butt while trying to recover from the kidney surgery. If I were in your shoes, I would skip the creams and botox and go straight for the gold standard fissure treatment (LIS) and put your fissure problems "behind" you once and for all.
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Re: Thinking about LIS

Postby jr2 » 24 Apr 2013, 14:34

Not an easy decision to make because no one can predict how your recovery will go for LIS if you choose to have it now. And you will get as many opinions from others as there are options available, so instead of advice, I'll just offer some things to think about.
If it all went in the best possible way following LIS, you would be really happy you did it. But because there is no way to know how your healing course will go, what would concern me most is being left with lingering problems from a fissure and/or an LIS wound when you have to have your kidney surgery. You don't mention why you are having a kidney removed, so it isn't clear whether your body is currently under stress due to a kidney condition. That stress could potentially contribute to a poorer healing outcome.
Yes, there are people who do end up with some degree of incontinence after LIS, some of them short term, some of them it doesn't show up until many years later. For most people it is incontinence to gas and slight leakage, but over the years I have communicated with a few who ended up with full stool incontinence. The statistics range all over the place and really it depends on the skill and experience of your surgeon as well as your own health and anatomy. It is critical to only choose a highly experienced, board-certified surgeon who is willing to answer all your questions about rates of success, number of surgeries performed, rates of complications, etc.
If you do have a kidney condition, you need to be very careful about using stool softeners or laxatives so make sure you check with your kidney specialist before you use anything like Miralax, but it's important to discuss preventing postoperative constipation regardless of which route you choose to go with your fissure - LIS, Botox and nitro.
Good luck, and keep us posted!
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Re: Thinking about LIS

Postby howtobepositive » 27 Apr 2013, 01:58

Thanks very much for the replies guys, very generous! The more I read on these forums the more I realize that there are still tons of nice people in this world and life just seems a it easier to deal with knowing Im not alone......
Here is an update on the situation. As you guys could probably tell by reading my story I am the worrying/inquisitive type personality and especially something related to health I get paranoid very easy. I had been thingking LIS for a while now but because I could get by and the pain was manageable with softners and diet control I was hesitant but it was nagging me for a while.
I am in Canada and our super famous public health system had given me a date of October 29 for the LIS, in the beginning I thought ok that gives me a lot of time to try and recover on my own, but its been 5 months now and I struggling with this. So this afternoon I get a call from the hospital that there is a cancellation for the coming Tuesday and I was like wow thats a strong hint from God. I thought about it for half an hour and talked to family and friends - and booked it!!
The surgeon whos doing the surgery is a general surgeon and not a CRS though, but I met with him for a consult and he seemed to really know what he was talking about and has done thousands of these with good results so I feel comfortable going to him.
Now I just gotta stay calm till Tuesday and hope for the best.
I will keep you guys posted on how things progress. Fingers crossed, please pray for my recovery :)
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Re: Thinking about LIS

Postby jdhouseholder » 27 Apr 2013, 09:45

I am praying!! Good luck and fill us in on your progress. Image
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Re: Thinking about LIS

Postby ravians » 27 Apr 2013, 13:49

How to be positive. Best of luck with your help I s. I have not read ur previous posts but your story must be the same as many others. I m also suffering n booked lis on Thursday. stay in touch n keep posting. me will tell u my story when go through it. take care.
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