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