Ostomy Surgery - Take Two

 It's been a hard few months, which is why I haven't posted since September and I apologize for that.

So, that last time I posted, I had had surgery for removal of a couple of peri anal abscesses and a temporary loop ostomy done. A lot has happened since then.

I was having too much output from my ostomy and I was becoming very weak, throwing up, dizzy and light headed. I requested my family doctor for some blood work because obviously something was not right. I got it done on the Friday before Halloween in the afternoon and by Saturday morning, my doctor called and told me to get to the hospital ASAP as I was in acute renal failure and there was a chance my kidneys could shut down. It was a scary thought and strange as I was not having any symptoms for renal failure, that I knew of anyway. No kidney pain, I was still urinating, clear flow, no fever or chills, I was drinking lots, nothing. My Creatinine levels after the blood work was 1068, normal is 45-110 and my GFR was 5, normal is 60-100. I had my wife call an ambulance. More bloodwork was done in the ER and my levels dropped more. I was so tired and worn out, I could barely move.

Two days later, my surgeon had me transferred to her hospital to tackle my kidneys and then have my final surgeries, make my ostomy permanent as well as a proctectomy (Barbie butt). It took about 10 days for my kidneys to recover to a point the doctors were happy enough for the surgery to go ahead. A lot of water and IV fluids. My surgery was set for November 13..... Friday the 13th.

Surgery went well, although it was over 6 hours. She was able to release some matted small bowel that was secured to my pelvic wall with scar tissue for previous surgeries. This gave me more length to help the ostomy. My rectum was removed and she found it was full of a pus like material most likely because of 30 years with peri anal disease. She did mention to me that looking through the small intestine I have left, she only found 2 inches of diseased bowel, so some good news. It was a very long surgery and was given 6 pints of blood, which I don't think I have ever had that much ever with all my surgeries. The ostomy was moved from the left side (temporary loop) to the right side. I have more scars added to my collection now with the temporary ostomy removed, vertical scar through my belly button beside my old scar and numerous laparoscopic scars.

I needed to stay in recovery for 3 days because of low blood pressure. They moved me to the HICU after 24 hours and remained there another couple of days before moving me back up to the ward. The hospital allowed my wife come visit me while in recovery which was very nice. With COVID restrictions, visitors are not allowed and she needed permission to visit. For some reason, I wasn't given an NG tube so of course after a couple of days I was throwing up bile...a lot of it. Back up in the ward, the dreaded NG tube had to be inserted. I don't normally have good experiences with the NG being inserted after surgery, but they gave me a smaller more flexible and it went in just fine, no problem, but still uncomfortable in my throat.

Slowly, and I mean slowly, I started to recover. Its taken longer than I expected but the proctectomy is taking forever to heal. Twenty seven days in hospital for this surgery and as of today, 19 days recovering at home. Every day is frustrating with one thing or another, whether that be my butt or the bag leaks. The flange leaks on either side with belly button on one side and an old scar on the other, very challenging. Another challenge is my kidneys. I have blood work once a week and my GFR and Creatinine have dropped, even though I drink a ton of water....apparently not enough. It's gone up in the right direction lately but the doctors are monitoring it carefully. I don't want to go back to before.

It's been a long 3 months so far, including my first surgery back in September, and I hope it's not another 3 months in recovery. Fingers crossed for a complication-free recovery.

Surgery Update

 After surgery and a little complication, I'm finally out of hospital, but at least I'm home now.

Surgery went well, so now I have a temporary ileostomy. We were going to do a permanent ileostomy and proctectomy but with active peri anal disease going on at the time, it was decided to drain and pack multiple abscesses and have a temporary loop ostomy. The proctectomy and permanent ostomy will be in another 4-6 months to make sure the fissures, fistulas and abscesses are gone. That's the plan anyway.

I'd like to thank all the doctors and nurses at the Royal Columbian Hospital for taking good care of me while inside.

It's taking some getting use to having a bag now, physically and mentally. I know it has/had to be done, but I realized that this is the final step in my long journey, or battle you might say, in fighting this disease. There is no other way to go. I have had Crohn's for 32 years now and 30 of those years dealing with peri anal disease. I had learned different techniques to mange the multiple fistula's and abscesses and they finally got the best of me. Now I wait to see if the re routing of my bowel will help ease the peri anal disease, then I can get the proctectomy and permanent ileostomy.

This will be my NEW "normal" and after all these years, I'll be starting all over again.

So, we turn yet another page and start a new chapter in my book of Life.

300,000 Views !!

 Noticed this morning that my blog has reached over 300,000 views!!

Thanks to everyone who has come by. Hopefully I was able to help in some way, even it was just to have a giggle. What started out as a diary for me has blossomed to what it is today, a place for everyone to either learn something new or for just to follow along on my long journey.

I cannot express enough my gratitude to all who have read my blog, thank you!!

On a side note, I am still awaiting a hospital bed for my surgeries. It's a weird feeling. I have never, in all my Crohn's years, had to walk in the front door of a hospital for surgery. For all my surgeries, I have already been in hospital through the ER and admitted through them. The wait is bothering me, but mentally, not physically. The longer I wait, the more I think about it. It sucks. I know it needs to be done, but try telling that to my head.

The wait continues....

Surgery Time !!

 Had my colonoscopy this morning by the colorectal surgeon. Everything went fine, but as usual, I don't remember leaving the hospital let alone talk with anyone. With new COVID measures in place, after my procedure, I was wheeled out of the hospital by a porter, so I don't remember talking with the nurses or the surgeon. Normally my wife is there and she can listen to the doctors and nurses with what happened and if anything was discovered.

Fast forward 4 hours later and I get a call from another hospital telling me they have my bed ready. Ummmm, what??  I mentioned that I just had my procedure and cant get to the hospital today, plus the fact I had no idea WHAT I needed to go for. They didnt know either, other than they were to secure a bed for me.  A few minutes later, I got a call from the surgeon.

She asked me if I remembered our conversation during the procedure. I told her that I dont even remember coming home. She laughed and said it is always strange to her because I was very lucid and was talking with her. Nope...dont remember.  Anyway, she couldnt get the scope past my small intestine because of inflammation and stricturing. Keep in mind, that I only have a rectum which my small intestine is attached, so that's not very far in. She mentioned because I "looked good" compared to when she saw me last, that she recommends the surgery sooner than later because I would tolerate the surgery better. Nope...dont remember that either.  She wants to get me into a bed even though the surgery probably wont be for a week or so. It's either that, or it wont be until the new year sometime. She was going to see if she can get me into the hospital by Monday or Tuesday so I had time to wrap my head around it because it was happening so fast. I agreed.

Now, of course, my head is spinning. So many things to do to prep. I have bills to pay over the next few weeks....done. Need to get my hospital bag updated and ready....done. I'm sure there's more I'm forgetting.

Now, if I can just get my HEAD ready for an ileostomy and proctectomy......

Colonoscopy Prep....?

 Everyone has a different approach when it come to the days leading up to a colonoscopy. 

Eat this, but not that. Drink this, but not that. Take this, but not that. Depending on your particular situation. "Normal" people who have "normal" bowels, I actually feel sorry for. They aren't use to restricting foods on a daily basis and I'm sure they feel they are "suffering" with the restrictions.

I laugh.

For IBD'ers, it's a piece of cake...so to speak. For me, I've tried the oral prep AND the enema prep but neither really worked, not sure why. I'm pretty sure it's because my small intestine is attached to my rectum, I barely have any large bowel left. Both types of prep cause me great discomfort. 

Now, I need this colonoscopy leading up to removing my rectum, anus and add an ileostomy and luckily my surgeon is doing the scope so she can look for what she needs to do from the inside. So, this is what I normally do...

Four days before the test I switch to a liquid diet. No food at all. Breakfast is black coffee or tea and jello. Lunch AND dinner is juice, water, black coffee or tea and chicken broth. That's it. In between I'll have some Gatorade. 

Now, you'd think I'd be hungry, but I'm not. With the amount of liquid intake, I "feel" full. I may not actually be full, but as long as I just have the feeling, that's what I need. Plus, I'm use to it. There have been too many times in my crohn's life that I have stopped eating. By the time my test rolls around 4 days later, there's nothing left inside me to interfere with the camera. 

This is what I DO. It may not work for others. The normal prep will probably work for everyone else, but I wanted to say, this is what I do, for me, because the normal prep doesn't work and causes great discomfort. Like we always say, what works for one may not work for another.

Crohn's Humor

 

Gutsy Walk 2020

 There is one more week before the Gutsy Walk  on August 23

I'm ready to go, walking around my neighborhood this year with my FitBit to track my steps. There's still time to support my walk to help with the fight against Crohn's and colitis.

You can support me here:

GutsyWalk2020/vernonlaine

Let's help make IBD (Inflammatory Bowel Disease) a thing of the past !!

Crohnie Quote of the Day

 It's okay NOT to be okay.

You Might Be a Crohnie

If you have a bowel movement every morning at 8 AM, but don't wake up til 9 AM
...you might be a Crohnie

It's in the Bag

32 years of fighting Crohn's disease has lead me to this... I need surgery for a permanent ostomy.

This is probably one of the hardest things to write about for me, it's taken me a couple of weeks to figure out what to say.
I need the surgery because of the peri anal abscesses, fissures and fistula's I have been dealing with for 30 years. I started getting them just 2 years after diagnosis. We have tried every medication attempting to fix these problems as well as deal with flares and pain.
Nothing seems to have worked, even the biologics. Remicade for 8 years and Humira since January.

My GI and I have talked about this surgery for years now, but I have learned to live with these problems most of my life and the thought of major surgery.... again... just didn't appeal to me.
I had an MRI done recently and it showed there is an abscess "collection" deep inside (that I cant feel) that has tripled in size since my previous MRI in 2017. It's not big, only about 2-3 cm, but that, and the fact my GI is concerned about the possibility of hidden cancer, made the decision for me to suck it up and get it done.

I have one of the best colorectal surgeons doing the surgery, so I feel more at ease about it. She has become and expert in the TaTME (Transanal Total Mesorectal Excision) technique and I will come out of the surgery with a permanent ileostomy and no butthole (Barbie butt).  I now have multiple tests to be done including blood work, CT scan and yet another colonoscopy. So, knowing all that, I have no idea WHEN the surgery will be.  Will I be ready? Sure...physically. I've had so many surgeries, another one is just that... another one. Will I be ready mentally? Not so sure. I haven't had major surgery in over 16 years for my 5th bowel resection and that one left me in hospital for 3 weeks. I remember the length of time to recover AFTER I got out of hospital and the thought of doing it all over again, just doesn't sit well...in my head. Every one I have talked to who have had ostomy surgery, say it is the best thing they have done for their Crohn's or Colitis and have no regrets.

And so, the next stage of my Crohn's journey begins.....