3 Years Without A Colon

 Has it really been 3 years?  What can I say but, I have no real complaints about my medical condition.  I’m to the point now when I almost don’t remember what it was like not to have a J-pouch.  I do think about what I went through with UC and my surgeries everyday.  I also think about how grateful I am to live in a time where doctors can perform medical miracles.  I think about how grateful I am for the doctors  that took the time to study and be trained on how to treat UC and cancer.  I think about how if, I had not had a CT scan when they were diagnosing my UC, and found the cancer in my kidney, that I would probably not be alive right now.  

As look around my home and see that my kids have become teenagers and that I even have one in college, I realize how fast my life is going and how grateful I am to be around to be a part of it.  Not only am I around, but I’m not sick in bed or in agony on the toilet.  Today, my life is great.  The past 3 years have been an absolute gift from God.  I have no idea what is in store for me for the future, but I’m looking forward to really good things.  

Pouchoscopy - 1 Year with a J-Pouch

A couple days ago I had my pouchoscopy (Basically a colonoscopy for people with a J-Pouch).  I was laying on the bed in the procedure room as the nurses and techs buzzed around getting ready and I looked down at the familiar blue hospital robes I was wearing and wondered if it was one of the countless ones I had worn before during the weeks I had spent in that hospital.  I looked at the IV drip trickling saline into a vein in my arm.  The familiar beeps of medical equipment around me.  The over waxed linoleum floor.  The PTSD began creeping in.  I pushed it away by closing my eyes and thanking God for this reminder of my past life.  I thanked him for reminding me of where I had been.  I became so grateful that this scene was really part of my past life and it would be all gone very soon.   Moments later, the meds kicked in and I drifted asleep.

I woke with my groggy ears hearing my surgeon say " Your pouch looks great.  I think we are good to see you in 5 years."  So that's it.  This chapter of my life if closing.  I understand that my life will never be the same as it was before I was diagnosed with UC. I've embraced my new normal and I am absolutely determined not to be held back.  Life without a colon is not easy.  When I start to feel picked on, I try and remember what my life was like while I was flaring with UC.  For me, gettin the  J-Pouch was a great decision.  It gave me my life back, and yes, I would do it all again.


P.s. For those approaching surgery and are wondering what to expect, I know it is different for everyone, but here's how the adjustment period went for me:

First 2 Weeks:  Super Rough! - Frequent accidents, especially at night. Had to wear a diaper.  My stomach was always bloated with gas and struggled to get it out of me.  Butt-burn was fierce and I was using way too much Calmoseptine ointment.

Month 1-3  : 6-10 trips to the toilet.  Terrible gas cramps / contractions, Constant struggle with how to get the gas out of me.  Butt burn / relentless itch present and unforgiving.

Months 4-7 : 6-8 trips to the toilet a day.  Gas cramping lessened, figured out a few things to get the gas out of me.  Laying on my back and bringing my knees to my chest seemed to do the trick.

Month 8-10 : 5-7 toilet trips a day.  Cramping pretty much gone.  Still struggling to figure out how to fully empty pouch.  Looking back, I was probably overdoing it on the fiber making things too thick.  I was drinking fiber with every meal.

Month 11-12 - 4-6 toilet trips a day.  Cramping almost entirely gone.  It really only occurs if I haven't emptied my pouch for several hours or if I ate something that makes the gas build up.  My current schedule is follows (fluxuates depending on what time I eat):

6:30 am - Toilet Trip 1 (Sometimes I don't need this one which pushes my afternoon trip earlier)

12:30 pm - Toilet Trip 2

3:00 pm - Toilet Trip 3

5:30 pm - Toilet Trip 4 (Sometimes I don't need this one)

8:30 pm - Toilet Trip 5

10:00 pm Toilet Trip 6

This may seem like a ton of times to the bathroom a day for someone that is used to going once or twice a day.  Honestly, it’s all relative.  If you’ve spent months or years of your life having to go 15+ times a day and living in constant fear of crapping yourself, 4-6 times on a fairly consistent schedule, with no sudden urgency is a dream!

A Year without a Colon!

Happy New Birthday to Me!  A year ago today, at this very moment, I was laying in a bed in a hallway outside an operating room.  They were finishing setting up the operating room where I was having surgery to remove my large intestine.  I looked out the big window next to me at the City below.  It was winter and everything looked cold and grey.  I took a deep breath and surprised myself.  I thought I would be freaking out at this moment, but I actually felt total peace (It may have had something to do with the sedative the anesthesiologist had just given me) but I remember knowing I was doing the right thing.  A few moments later, I was wheeled into the operating room and my life was changed forever.

Over the past several months I had been experiencing an Ulcerative Colitis flare from hell.  The flare refused to respond to any of the traditional medical treatments.  It had left me 30 lbs underweight, having around 15 painful bloody bowel movements a day, some of which would be so urgent, I wouldn’t make it to the toilet in time.  I was wearing diapers.  I was a mess physically and mentally from being on prednisone for so long.  I was existing, but barely.  This UC flare was by far the worst thing I had ever experienced in my life.  It truly was like a slow walk through hell. 

So here I am one year later, and so happy with my life now!  Don’t get me wrong it has been a rough year.  I had one surgery to remove my colon and create a ileostomy.  Another surgery to create a J-Pouch to replace the colon, and a final surgery to connect the J-Pouch once it had healed.  All of them were major operations and required huge amounts of recovery.  I had a stoma and lived with an ostomy for close to 7 months total.  It has been five months now since my final surgery and I am now a bonafide J-Poucher.

 I am still adjusting to life with a J-Pouch.  I’ve been told it takes around a year to fully adjust.  Even after just 5 months, I am really happy with how things are going.  I’m basically doing everything I did before I had UC.  I’m exercising again, swimming, eating most everything I want (still avoiding big salads and anything too spicy because it = VOLCANUS).  I’m making around 6-7 trips to the toilet a day but they are never super urgent -  No big deal.  My trips to the potty may decrease as time goes on but frankly even if they don’t, I would be fine.

Bottom line, the surgeries are really tough, but not as tough as uncontrollable UC.  I would do the surgeries again, no question.

 It’s good to be Back!

One Month after Final Surgery

One month ago today I had my final surgery!  What a month it has been - Such a roller coaster! My surgery went great.  A few hours after my first meal, I got to test out my new plumbing.  It worked!  I felt like I should get a reward like I used to give my kids when we were potty training them.  Everything was going great so they released me back into the wild a couple days later.  If only things had stayed that way....  About 4:00 am the next morning, everything fell apart.  I started feeling really sick.  My abdomen puffed up like a toad in the sun.  I was cramping up big time and after barfing my face off in the shower, I knew something wasn't right.  Back to the hospital.  After a CT scan and some blood tests, they determined that my intestines had decided to stop absorbing any of the water I was drinking.  I had become super dehydrated.  They hooked me up to IV’s and I would end up spending the next week in the hospital being pumped full of fluids.  Happily after a couple of days, my intestines woke up and started doing their job, They kept me there for the rest of the week to make sure I didn’t relapse.  Those were some long days and I had several low moments.  Mostly, I had zero appetite, and just did not feel well.  This was on top of constantly making trips to the toilet.  I  knew it was going to be tough, but I’m not sure there is anyway to fully prepare yourself for how hard those moments can be.  When your in the thick of it, it can be really tough to see the light at the end.

I had heard that during the adjustment period, people often miss their Ostomy bag.  While I never hated having the bag, I didn’t miss it.  Despite being miserable, It was kind of nice not having that bag pulling on me and always having to check it to see how full it was.  Mostly, I think I had mentally moved on.  My bag was now replaced with a 1 inch diameter open wound that they would teach me to pack with gauze twice a day.  I was not prepared for how deep that thing was.  My surgeon warned me that taking the gauze out of it was like seeing a bad magic trick.  It just kept coming and coming.  I’m told this will eventually close up and heal to a scar the size of a thumbnail.  

Fast forward to a month later.  I’m definitely still adjusting to the new plumbing.  I’m making around 6 - 9 trips to the bathroom a day.  Most of which are in the afternoon and evening.  Honestly, if this is as good as it gets, it will have been worth it and I’d do it again.  With my Ostomy, I was having to go to the bathroom to empty it around 12 times a day. My only hope is that my system figures out how to fully empty itself.  Many times, I’ll think I’m done and a minute or two after I leave the bathroom, my guts start gurgling and I’m feeling like I got to go back.  It is uncomfortable but, It’s never urgent, which is amazing!  I think I still have a little PTSD from my UC days when I would get a sudden feeling of urgency and know that I had literally nine seconds to find a toilet or I would be throwing away another pair of pants.  I can’t explain how nice it is not to have that be part of my life anymore.

So, while one month is still super early in the recovery realm of J-pouches, I am really happy and optimistic with how things are going.  I will continue to dial in ways to counter the “butt-burn” that comes with having a j-pouch.  Since I no longer have a colon to absorb most the acid out of my stool, sometimes it comes out a bit like red-hot itchy lava.  The barrier cream and bidet definitely help, but it is absolutely there, and is definitely not fun.  I hear this gets better with time.  I believe it will.

 The past year has been the hardest year of my life without question.  However, I am so grateful for the things I’ve learned this year.  I feel like I appreciate every aspect of my life so much more.  I feel so blessed to be born in a time when the medical world can do all this stuff and make us pretty close to normal again.  I’m so glad I had these surgeries.  It was the right choice for me. I’m really enjoying being UC free!

One month post surgery -

Final Step - Goodbye Lazarus

Final Step

There is always a few minutes of waiting before the start of a marathon where I'm standing there in a pack of fellow racers, waiting for the gun to go off.  I always feel anxious in those minutes.  I know that it's going to be a long run and it's going to be tough, but I just want it to start.  That's how I feel right now.

In a few days, I will change my ostomy bag for the last time, say good bye to Lazarus (my stoma) and begin my life with a J-Pouch.  While I have studied like crazy about what life will be like with a J-pouch, I know it will be my own journey and everyone has a different experience.  As I have read, I have gleaned a few tips that I will be prepared to implement as I get used to my new plumbing.  They include:

1.  Calmoseptine Ointment - Supposed to be a lifesaver for the dreaded butt burn.
2.  Bidet - I'll be installing this upgrade to my toilet this weekend. This is also supposed to reduce irritation from the frequent trips to the potty / toilet paper use.  Maybe everyone in the house will want to use it and we wont even need TP anymore?  This will be a tough sell, especially as it gets closer to winter (My cheapness stopped me from buying a bidet with heated water).
3.  Flushable wipes - Supposed to be much easier on the tush then the standard 2-ply
4.  Adult Diapers - As much as I hate the idea of having to use these again, I understand they may be necessary for the first little bit. (My heart wont be broken if that box never has to be opened)

I have also been reading a ton about what to expect.  There are hundreds of stories out there where people have documented their experiences.  I found some that I have referred to several times that give me great hope that I can expect a positive outcome.  It's unreal the amount of people that have actually been through this.  Even a few professional athletes.  One that I am really inspired by is:

Darren Fletcher - Pro Soccer Player in the UK (Manchester United) - Ulcerative Colitis survivor & fellow J-Poucher.

      

The second picture is actually me, I bought his jersey to remind me that people have gone through this before and been able to have awesome lives afterwards, even be pro athletes.  So, maybe it's not too late to give up on my dream of playing professional soccer. I just need to convince the world that being 43 years old is not too late to begin a career as a professional athlete (I would also need to learn how to play soccer).

I am going into this final surgery with confidence, faith and hope that this is all going to work out.  I get that there will be months of adjusting.  There is no way to fast forward time but every day of those months must be lived and experienced.  I will need to dig deep and channel my inner Wolverine.  I'm just ready to get started.  

J-Pouch Surgery 101

Over the course of the past several months, I have had many conversations where I would try to explain what kind of surgery I was having and what the end result was supposed to be.  As well as I thought I had explained it, I would get questions moments later like "So, is your backside is all stitched up now?"  or "Is the bag now going to be inside of you?"  There is nothing wrong with these questions, they just helped me realize that having your plumbing reconfigured can be really confusing.  Especially to people that really don't know the difference between large and small intestines and there functions (you could put my pre-UC self in this camp).  So, the way it made the most sense to me was by seeing a few cartoon sketches.  So here goes, J-Pouch Surgery 101.

J-Pouch surgery is done in either two or three surgeries.  Mine is being done in 3 because I was way to sick to handle it in two (and I was on prednisone at the time which slows down healing).

Step One Surgery - Entire large intestine (colon) is removed.  A portion of the rectum is left in place to be removed during the next surgery.  The small intestine is brought through an incision in the abdomen forming the stoma.  All stool exits the stoma and is collected in an ostomy bag.

Step Two Surgery - Rectal stump is removed.  A portion of small intestine is stapled together to form a J-Pouch.  The J-Pouch is then connected to the anus.  A new stoma is formed farther up the small intestine.  This is called a loop ileostomy (see picture below).  Even though the J-Pouch is created, it needs a couple months to heal before it can be used.  The loop ileostomy continues to divert the stool through abdomen into a colectomy bag while the J-pouch heals.

Step Three Surgery - Loop ileostomy is closed up.  The J-Pouch will start functioning as a small colon.  After this surgery there is no longer a stoma and a colectomy bag is no longer needed.  

(I get that this cross section is for a female.  The J-pouch set up is basically the same for dudes)

So there you go.  Those are the basic steps and process.  There are lots of fun details about dealing with each step but, I'm not getting into that today.  Let's just say by the end of it, the hope is you get to return to a normal lifestyle The new normal having to empty the J-Pouch 6 or so times a day.  Going number-two that many times a day may seem like a lot to the average human with a colon,  but when you have experienced raging  UC and had to deal with  20+  demon BM's a day, six seems like paradise.     I have been told it takes time to adjust to the new plumbing (can be around a year).  So another opportunity to exercise patience!

One Week Post Op

A week ago today I woke up from my second step surgery to conquer my UC.  For the most part it was a very similar feeling to the step-one surgery I had in February.  I was out of it, sore, mildly nauseous, and just have flashes of memory of the day.  A couple of the memories are as follows:

A big grey cloudy shaped person telling me to blow into this plastic hose.  I figured this was the device they give you to help your lungs avoid pneumonia while in the hospital.  I remember they kept saying my name because I would fall asleep between breaths attempts.

I remember drinking some cranberry juice and thinking it was way sweeter then I remember it ever tasting before.

I remember looking at the clock and seeing that it was 8:00pm and that I had basically slept all day.  

The next day I was much more lucid.  My health care team was fantastic.  I was able to stay on top of pain with a pump they hooked up to my IV.  Between this and regular walks around the hospital corridors, my four days were rather uneventful.  This being my 4th time in the hospital since November, I felt like everything was old hat.  

The day after my surgery, my surgeon came by to give me the play by play.  They had successfully removed my rectum, taken a portion of my small intestine and created the J-Pouch..  For the next two months while the J-Pouch can heals they do a temporary ileostomy similar to the one I've had since the first surgery. He said that everything went well, but they did have to use a slightly different method then they typically do due how inflamed my rectum was.  He said it didn't add any additional risk to me but, I got the idea it was just a little messier.     Bottom line, he said my body should start feeling much better to not be fighting all that inflammation.  They were great words to hear.  It was just another reminder of the contrast of once you are sick for so long, you start to forget what it's like to feel healthy.  I had felt so much better after having my colon removed during the first operation that it never dawned on me that it could feel even better after the second. 

So far, my fears about having a loop ileostomy compared with the end ileostomy have so far been no big deal.  I had heard that lots of people with loops struggle to avoid leaks, and have big skin irritation.  Now I know it has only been a week, but knock on wood, I have changed my bag a couple times and it pretty much is acting like my end ileostomy.  Let's hope it stays that way. 

I will say, I am going way more stir crazy then I have for the previous surgeries.  Maybe because it's summer and there is just way more fun stuff I could be doing then pacing around the house and binge watching Battlestar Galatica.  I just keep reminding myself to be patient and this will someday just be a faint blip in the grand scheme of things.   

4 Days Post Op - Happy to be going Home!