Diary - LIS in a few weeks!

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Diary - LIS in a few weeks!

Postby GilmoreGirl » 15 Mar 2017, 18:04

Hi all, thought I would start a diary since I just got my LIS date - April 4th.

Some of you may have heard the long story before, but I'll summarize my journey so far in this post, and update as things go along.


I got a deep anterior anal fissure in September of this year, 6 months ago. I had a fissure once before, a year prior, and it cleared up quickly with nifedipine. This time however, I didn't just have the horrible pain during a bowel movement - I had gut wrenching pain for hours after. This, combined with my ibs (I go at least 3 times a day) did not bode well. I tried all the traditional methods:

- stool softners/ miralax
- psyllium and dietary soluble fibre
- nifedipine cream
- proctofoam hydrocortisone
- essential oil blends with witch hazel/ coconut oil
- 3 or more sitz baths daily

Nothing worked! I had to strain and cause injury with every bm, as the sphincter was just too tight. Eventually I ended up with an additional fissure, posterior this time. After a much too long wait and 3 trips to emergency I finally got an appointment to see my gastroenterologist, he ordered a colonoscopy to confirm that ibd/chron's was not the cause. I also got in to see a great colorectal surgeon, who said she would go ahead with LIS asap after getting the colonoscopy results.

The colonoscopy was no treat. I was prescribed morphine prior to the prep to help me get through it - and I needed it then. The procedure was painless as I was completely knocked out, and came up all clear.

I had LIS booked right away (at this point, it's December) but...of course...I finally went from scratching down the wallpaper pain to constant but bearable pain. My fissures had begun to heal over. I thought finally this would be the end, so LIS was cancelled and I was sent to a well known pelvic floor physiotherapist to help me relax the muscles down there.

I tried physio and nifedipine for several months, and really did not see any improvement from December. I had less pain during bowel movements as the fissures healed, but still had spasms for hours after and irritated hemorrhoids that just would not quit. I couldn't walk/stand/sit up or lie on my back for more than a couple minutes without a burning stabbing pain in the rectum began. I decided I wanted to go for LIS after all. I also began to see a chronic pain psychologist, as I was having suicidal thoughts nearly constantly and was becoming very depressed.

Things were delayed when my body began to react poorly to the morphine that was getting me through the day - turns out I have "narcotic bowel syndrome" where narcotics can actually cause gut pain to intensify. It was a lot of trouble figuring out what was going on with very little help from my GI - I finally came off the morphine, and had lingering gut pain (very severe) for more than a month after my final dose. (Just to note - I had only been taking it for a couple months, normally 5-10mg a day, but my system is just very sensitive!).

Since stopping the morphine two months ago, I've had chronic diarrhea - not good when you have butt problems. I was prescribed a low dose of amitryptiline and pepto bismol, which seem to be easiness the diarrhea slightly. (I can't take Imodium as it is an opiate that sets off my stomach pain).

Through all this, I've had very little improvement in rectal pain. I've been in bed most off the day for all this time. Finally I got a call today to say my LIS will be on April 4 th. My surgeon will be phoning me to answer questions this week or next. I will have a pre-op appointment with a nurse probably the day before surgery, to get my wrist band and do a pregnancy test (lol...like I've had any sexy time in the past 6 months!!!). The surgeon will also be looking at the extent of my hems, to see if she thinks they need to be banded or anything, but will likely do that after I'm healed from LIS.

I am worried about post op pain, since I want to avoid all opioids - and I can't take NSAIDS - so that leaves me with Tylenol and sitz baths!! But I'm optimistic that my pain tolerance is high and I'll be ok.

To be absolutely honest, this journey has been the hardest thing I have ever done. I didn't know my body could experience that much pain, let alone on a daily basis. Before this all happened, I was in the last semester of my master's thesis, I was working as a personal trainer with about 12 clients, I was running half marathons and deadlifting almost twice my body weight - very active, and I used exercise to control my anxiety and ibs. I walked everywhere, had saved up lots and was living in my own apartment, and had a great amazing boyfriend for over 3 years.

Since then, I often feel like I'm mourning my old life. I'm 24 and I'm so scared to never have it back. I've been basically in bed rest for 6 months. My body is exhausted from little food, sickness, pain, and diarrhea. I find walking up the stairs a struggle. I've had to take two semesters leave from uni, and may not be able to return for the next. I lost my pt job, all my clients, and my favourite thing to do. Ive lost a lot of money, and have had to move home with my parents, who have so luckily been incredibly supportive - I think I would have ended it all if they were not there for me. My boyfriend and I no longer speak, and I've lost many friends.

As a busy active person, this life is hell for me. I'm really hoping LIS will be the start of getting my old life back.

That's it so far! Sorry for the downer. I'm hoping it will be happy healing posts from now on! I'll update when I talk to my surgeon and relay our convo!!

Sending healing thoughts to all of you - we all need it!

-GG
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Re: Diary - LIS in a few weeks!

Postby Mypoorbutt » 16 Mar 2017, 05:55

Really looking forward to hearing you smooth healing journey GG will be thinking of you on the 4th.
I actually managed to get out for a run this morning instead of the treadmill...no pain so that was good.
You will soon be back to your old life Hun x
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Re: Diary - LIS in a few weeks!

Postby GilmoreGirl » 16 Mar 2017, 15:40

Thanks so much for your support, as always mpb!!

That's amazing!!! I can't even imagine doing that right now...so happy for you that you've come this far!
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Re: Diary - LIS in a few weeks!

Postby Mypoorbutt » 16 Mar 2017, 16:26

You will do it Hun your strong and determined. All you need is to be pain free and you will be back to running and lifting in no time...my legs forget that's it's harder running outside lol :lol:
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Re: Diary - LIS in a few weeks!

Postby GilmoreGirl » 16 Mar 2017, 16:31

Thanks mbp!!

I'm a little worried that this whole thing has given me some hems - not great during exercise. Have you had any banded before?

And yes! It's always a shock getting in that first outdoor run!! Still freezing where I am - glad at least I had to deal with this over winter rather than summer, I hardly went outside and didn't shovel snow once haha
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Re: Diary - LIS in a few weeks!

Postby Mypoorbutt » 17 Mar 2017, 07:45

I have had hems since I was 14 thanks to my IBS and obviously great genetics lol. I was going to have them banded in my early 20s but then my crohns started...my current CRS says he rarely bands hems and even though I have a lot both internal and external he would only do it if I insisted and they were causing me constant pain as he believes they cause stenosis and there is over a 90% chance they will return anyway. My hems don't really bother me during exercise but I think that's because I don't really remember a time when I didn't have them lol.
Well I went running again today even though it was raining and managed to get a bit further. Yes I know I'm glad I had my LIS in the winter it always feels worse if you have to stay inside during the summer
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Re: Diary - LIS in a few weeks!

Postby GilmoreGirl » 17 Mar 2017, 18:12

That's great mbp!! I actually always liked a run in the rain haha...all my best race times were rainy runs lol!

I'm noticing that the hems definitely swell a little after every bm - and the bms are unfortunately rarely easy as my ibs is just not under control - more formed bms which is good but still going a lot and lots of stomach discomfort which is only relieved by a bm...so that puts in me in a tricky situation lol, I feel like I trade one pain for another.

So basically I think the pain now is from hems + spasm. About 30 min after a bm the burning pain starts. I can relieve it with a heating pad, lying on my side, and it gradually subsides over the next few hours. If I sit even half upright for too long, stand or walk, the deep burning pain starts again.

None of this has been relieved from hem cream or cortisone, so I think the spasms must be involved.

Hoping to talk this over with the surgeon next week.

What kind of pain do your hems cause, if any? I don't have any bleeding or pain during a bm, but the internal hems do come out when I strain and they seem large to me.
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Re: Diary - LIS in a few weeks!

Postby GilmoreGirl » 19 Mar 2017, 17:44

Starting to get nervous.

Really worried about bms post - op. Had an appointment with my gastro today - I'm having a lot of ibs transit issues right now - and unfortunately he's told me i have to rely on either bulb enema or digital stimulation to go until I have less pain and can undergo bowel retraining. Ugh how embarrassing!!

What happens is that I have fast transit until the stool reaches the end of the colon, then it just does not move into the rectum without some help "signalling". Once I do go, I go lots, and it tends towards diarrhea. If I just wait it out, the stomach pain and bloating becomes unbearable, and its never ending once I do go. They're going to try and figure out why this happening, but it may be associated with the spasms, so LIS may help. But I'm really scared that the LIS incision will be wayyy too sore to allow me to do this post op, and that I will be either in tons of pain from aggravating the incision or in tons of stomach pain and discomfort from not being able to go. Very embarrassed but also very worried.
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Re: Diary - LIS in a few weeks!

Postby GilmoreGirl » 21 Mar 2017, 14:04

Given the strange hemorrhoid issues I've been noticing, by CRS wants to see me this Thursday, to check things out.

I'm thinking I have advanced stage hems, external....really hoping they won't suggest hemorrhoidectemy but they may....don't know if I could survive that.

On the more positive side, I now have a referral to a new gastroenterologist who is highly recommended. I've been told he is very caring and diligent, and provides email and phone contacts, calls to check in on patients, and is great with providing emergency appointments, so I think it will be a good change.
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Re: Diary - LIS in a few weeks!

Postby Mypoorbutt » 21 Mar 2017, 14:32

Hi GG
If your pain is coming from your hems then just getting rid of them might not be a bad thing.
I know I certainly didn't want mine removing but I have had them for at least 20 years and while they can certainly hurt they never came near fissure pain so for me the risk wasn't really worth any benefit plus as I had had them so long they would certainly come back especially with my issues.
But I know a few people who have had them removed and found relief and as you are having LIS then stenosis shouldn't really be an issue.
Hopefully the LIS will also have a positive impact on your lower bowel issues as the sphincter is connected to it all lol.
I have decided not to run in the rain as I now have an awful cold my first cold in two years...sure it has something to do with the rain lol.
Good luck GG x
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