I am pretty sure I am going into surgery on Monday with two of the most opposite surgeon personalities out there. I wish I had a spy or someone who could record this experience for me.

First, really quick… My MR Enterography was a complete shit show with protocol not being followed and complete incompetence by techs, but in the end I think we got some useful info. Lucky me got to drink 4 bottles of contrast vs 3 because they were clueless on time sensitivity of bowel imaging. Anyhow, we do not think there is any active small bowel Crohn’s happening. There is some bowel wall thickening with reactive lymph nodes, likely due to chronic disease but not necessarily active right now.

With that update out of the way, it’s go time. Pre-op complete and down to just over 4 days until I go under the knife. I’d like to say I had 2 pre-op appointments given I’m having 2 surgeons, but that’s not how Dr. V rolls. My pre-op with him was literally just my phone call we had in November deciding to go ahead and get the colon out. He is a man of very few words, very few explanations of what to expect, what could go wrong, or really anything. Of course he will answer any question you have, but he’s not very forthcoming with information. Almost that attitude of don’t ask, don’t tell. I suppose this works for some people. Not my favorite approach, but in the same breath there is no other colorectal surgeon out there I would choose. I do think he’s the best. And, while he doesn’t freely give info out if we don’t ask, he does have the best follow up care I’ve ever had. Of the 28 days I was in the hospital last year I think I saw him 25 of those days. Sometimes two or three times a day, even on the weekend. That is not common with surgeons and I appreciated it so much. I’m hopeful he will provide the same approach next week and maybe this time around he will chat a little more as well. I’m sure we will have a lengthy “pre-op” appointment on Monday minutes before I’m rolled back to the OR.

Dr. B on the other hand… boy she is a talker! In a good way though. She’s very personable and repeats herself several times. Ok, that is a little annoying, but I get it. She wants you to have ALL of the info. Every possible scenario, complication, outcome…. Craig and I sat with her for most of an hour today and talked through everything for Monday. The primary goal is removing the large pelvic cystic mass. She thinks it is likely attached to my right ovary which would require removal of that as well. There is decent possibility my left ovary is also entrapped in cysts. So, both ovaries may come out. She also discussed the possibility of a full hysterectomy depending on many things that they “could” encounter. So, it’s TBD. Anyhow, my point is I was given an overwhelming amount of info and possibilities. It was a bit much, but at the same time I appreciated the honestly. I think I like this approach better?

Dr. B was a bit surprised I didn’t have a pre-op with Dr. V. I think she was swallowing some words behind that mask trying not to show her surprise. I really wish I could be a fly on the wall on Monday or have a spy or a recording or something to watch these two interact. They seem to be polar opposites to me. Let’s just hope opposites attract and they work well together.

Until then, I’m going to figure out how to get through the next 4 days without too much anxiety. I’ve been a bit sick so I’ve been resting which is not good for my brain. I think I’m on the mend, but now I just need the will power to not do something stupid and overdo it. I’ve purposefully not planned much for the rest of the week and nothing this weekend. I’m going to soak up my family and Blue, cook a few meals, clean a few toilets, pack a hospital bag, and hold my breath. I mean try to keep breathing…

I’ll post again on Sunday. Stay tuned…

As I think I’ve said every year without luck for as long as I can remember, “I hope this year is better than the last!” 😂 I mean seriously…

I know it won’t be easy, but I’m going to walk into 2023 with GRIT, GRACE, GRATITUDE, and GUTS. Well, that last word is a bit of a stretch. A good portion of my guts are going to be removed in a few weeks, but you get what I’m saying.

We are up in Frisco right now, the beautiful mountain town our sweet Frisco was named after. It’s bittersweet for sure since he passed away in early December. Nonetheless, it has been a much needed ski getaway with Craig and the kids. My ski season will be short this year so I’m soaking in as much fresh powder as I can get in. My legs are feeling it, but I wouldn’t trade it for anything right now. Not even the beach. I love skiing so much and am bummed I have to pack this season in so quickly.

The first two days we spent at Breckenridge which is always a favorite. Liza does well except for the bag emptying part. Not an easy task in ski boots. Toilets are low so your squat needs to get deeper. Squatting in boots on a wet slippery floor with your legs kicked out for the forward lean is a recipe for disaster. Liza is located just 2 inches below my right rib cage. That’s pretty high so the path to the toilet is like half a mile. It gets messy, but in the end she pulls through.

Yesterday (day 3) nobody felt like skiing. I get it. Legs get tired and need a break. I however have a really hard time passing up the chance to ski. Plus fresh powder! I asked Craig to drop me off at Keystone around lunchtime. What a great decision! It was incredible. I have no problems skiing by myself. In fact, it’s quite enjoyable. Nobody to wait for, decisions are quick and easy…

There was so much fresh snow, no lines, not cold or windy. A perfect ski day. It was also very healing for me. I’ve got a lot on my plate right now. My mind is exploding. So, to spend a day by myself in the Outback of Keystone was exactly what I needed. Rumor has it a dumping is coming tonight so if our legs aren’t destroyed from a day at Breckenridge today I will be back in the powder tomorrow.

Keystone does hold a soft spot in my heart. It is a place with so many memories with my parents and family. When the kids were young my siblings, all of their kids, and my folks came out a few times for a ski vacation. It was so much fun getting everyone together. I know these are precious times that nobody will ever forget. Below are a few of my favorite pictures and why Keystone holds a special place in my heart. My dad poking his head out with the girls, snuggling with Ryan on the bus, and my mom with 7 of 12 grandkids around her. I miss my parents so much, but yesterday I had a lot of smiles thinking of these wonderful memories.

The past few weeks have had a lot of ups and downs. Christmas was tough. There is an overwhelming amount of emotions going on in my head right now as I know 2 weeks away is a huge surgery for me with so many unknowns. But, with those rollercoaster of emotions there are several things that remain constant… how much I love my family and friends and how very grateful and blessed I am to go into 2023 with an enormous village by my side.

Here’s to a better year ahead!

I meant to post this blog a while ago as I have had this surgery date for a bit, but if you read my last heartbreaking blog, life around our house has been tough the past few weeks. Losing your pup is so hard.

Anyhow, my surgery is one month from today – Monday, January 16th. Oy. When it was scheduled, it was 8 weeks away and now we are approaching 4 weeks.

The surgery itself will be lead by Dr. V who is my colorectal surgeon. He will open me up and stage everything for the GYN surgeon, Dr. B to do her part. She will remove the large pelvic mass and my right ovary. Right there in the OR, a pathologist will do a frozen specimen biopsy to confirm it’s benign. If there are any concerns at all she will take my left ovary and uterus. But, I have decided that there will NOT be any concerns and I’m NOT going to fly right into menopause. Are you guys on my page?

Dr. V will remove my colon, my rectum and then sew up that area. They (google, bloggers…) call this “Barbie Butt” surgery. I don’t think I need to say anymore.

Surgery itself will be long- maybe 4-5 hours. Recovery will be brutal. But, I am healthier than I was a year ago so we hope that carries a lot of weight. Sitting will be very painful for a while. I need to get all sorts of memory foam gadgets to offset the pressure and Craig and I purchased a power recliner for sleeping/resting. As with my surgeries last year I’m sure there will be a lot of Amazon Prime shopping trying to get all the right stuff quickly.

I’m sure there is so much more to this surgery that I should be asking about or knowing, but I’m in a little denial. I am staying off of Google. Best not to go down that rabbit hole when you are dealing with butt’s and guts.

On another note, there may be something going on with my small bowel Crohn’s. I’ve had symptoms higher up that include a lot of nausea, appetite loss and pain near my belly button. This certainly could be related to the colon and cyst the size of a grapefruit and I sure hope it is. Heading into a small bowel Crohn’s flare right now is the last thing I need.

I reached out to Dr. Gerich to give him an update and ask for some anti-nausea rx and some pain meds for the pain episodes. Well, this opened up a can of worms. He called me and doesn’t like these symptoms at all. He ordered a stool test -where I dump ostomy bag contents into a container to be tested for inflammation. It’s much more accurate for colons, but he wanted to see if there is a trend as I had this test done about 6 months ago. It did go up although is still not over the threshold. However, my WBC, Platelets, Neutrophils, and Monocytes are all well over the limit.

I told him that since I now had some anti-nausea and the mild steroid Entocort (not prednisone thank goodness) that I was ok just waiting until surgery because it’s likely all related to the colon. Nope. He does not want to do that. He does not want them to open me up to find a mess of inflammation. So, in a few weeks I’ll be having an MRE(MR Enterography). It’s like an MRI, but provides much more detailed info of your bowels. Jan 6th is cutting it close to surgery, but that’s the first available. I will continue to call to see if there are cancelations. I am not worried and do think it has to be my colon and cyst, but he’s my voice of reason. He’s just being cautious which in a major surgery like this you really do have to be. We need all the info so there are no surprises. Since the pain is higher up it’s a red flag to him along with nausea and blood test results. I know I told you all in the past that my upper small bowel Crohn’s is the most worrisome to him. Far more than this colon stuff.

As I get more info I will give more updates. For now, I hope you all have a wonderful holiday season. Count your blessings!

Despite mentioning that my blog would be busier as I approach surgery, I have not written in a while. Our family just went through a devastating loss and I am struggling more than you’ll ever know. On December 5th we lost our sweet 8 year old Golden Retriever Frisco to aggressive Leukemia. We had only just found out he was sick as he had very mild symptoms and was doing well. I had taken him in for a hot spot that I wanted the vet to check out and incidentally his lymph nodes were huge which alerted her to do some testing. We were still waiting on test results and before we knew it he needed to go to the ER and was gone. He had Acute Myelogenous Leukemia which is the most aggressive type there is. Dogs go from no symptoms to gravely ill in no time. I spoke with the oncologist and our vet, along with our breeder and this type of cancer is not necessarily genetic. They think it’s a mutation of a gene that interacts with the toxins in the environment resulting in a blood cancer. Frisco’s parents lived a long time, he just had the mutation which is so sad.

The grief from this cuts right through my heart. As most of you know Frisco and I volunteered a lot together at the Children’s Library and Good Samaritan Hospital. We had this incredible bond that was noticed by many. He gave unconditional love to every single person he met. From the lean (hug) into the nurses legs at the hospital, his butt scratch bouncing routine, putting his head in kids laps or rolling over for belly rubs at the library, telling stories with this deep guttural purr he had, resting his head on a patients bed…. He was pretty incredible. Sometimes I’d be out and about and hear “hey, is that Frisco the therapy dog?!” He was truly a celebrity around here and I am not being biased. Really I’m not. The hospital is doing a brick for him to honor his 5 years there.

So, you can understand why this very sudden loss of only an 8 year old Golden has broken me. I know in time the grief will lessen, but for now, as we are approaching Christmas and my surgery I have shut down a bit. I have questioned so much about the powers above and why something like this happened at a time when I am struggling to deal with so much already. There are so many prayers out there and I love all of you for that. I pray too and lately none of those prayers are being answered. I know I have so much to be grateful for and believe me, I am. I am so lucky to have an amazing husband, two incredible kids, a family I love so much, a nice home, job security, ability to travel and live, but right now life is tough. I’m sad. I needed Frisco more than ever. And what even makes me more sad is seeing the puppy dog eyes of our 4 year old Golden “Blue” who is lost without his buddy.

Craig is struggling, telling our kids was heartbreaking… Emily comes home tonight and while she has known for almost 2 weeks I think she will be really sad when she walks in the house realizing it’s real. I haven’t brought myself to take down his stocking or remove the extra dog bed.

I’m sure there are readers out there who think “my goodness, he was a dog, it’s not like you lost your child, best friend, husband”. I probably sound like a country song. But, for all of you pet owners you will understand how heart wrenching and soul breaking a loss like this is.

I know Frisco is waiting at the Rainbow Bridge for me along with Copper who was our first Golden from the same breeder who lived to be 13.5. I just wish we had more time.

I was going to give you more updates actually related to my surgery, but I’ll start another blog for that. My fingers couldn’t stop typing this one. The picture below was actually taken just a week before we lost Frisco, when he was doing great :-(. The heart shape on Frisco’s face is priceless and tells you how much love he brought into our lives.

I’m sitting here on a very chilly and snowy Colorado morning. It’s been a busy week and it’s nice to have some time to sit and reflect on the craziness that is going on around me. The holiday’s are approaching and I should be wrapping my head around that, but it’s very hard to focus these days. Even without all the Crohn’s stuff life has been unusually more busy for us. A lot of travel so far this fall and within the next three weeks, two more fun quick trips to California for some high school lacrosse are coming up. I’m so excited for Emily to come home for Thanksgiving and can’t wait to start celebrating Craig for his 50th birthday. Busy is good for me right now. Anything to keep my mind off the impending surgery is welcomed.

I’ve had some more appointments and each one of them is helping me get emotionally ready for what I feel is a human anatomy lab or the gutting of a fish or something…. A few weeks ago I had a really great appointment with Dr. G. He knows how scared I am and he knows that this is far from the plan we recently made to take my colon out in a year. He doesn’t understand how I keep being dealt so many blows, but assured me that he is here for me through it all. I spoke to him about Dr. V and how while he is an excellent surgeon he is very hard to talk to. I think most surgeons are like this. Completely emotionless. For me, that’s hard. Dr. G is so personable and shows feelings both good and bad. The bad ones are when he needs me to step into reality more than I am and the good ones are when he expresses encouragement, hope, or just sit’s there and asks about my kids because he knows I’m having a hard time. It was an emotional conversation for me and for the first time I told him about some things that happened last year that he didn’t know about. Don’t get me wrong, in the end, I came home with a very healthy, well working ileostomy that hasn’t given me problems. But, the few weeks before were absolute misery where I felt like Dr. V had no idea how to fix me and I felt unheard. Dr. G had no idea I felt this way. He offered to speak with Dr. V and ask him to set up a telehealth visit. He told me that this surgery is very major and he wants me to build a better rapport with Dr. V. I was reluctant to agree, but in the end I decided that I needed to get some things off of my chest in order to move forward with comfort. He then told me that if I am not feeling heard, to please reach out to him and let him know. He’s here for me and while normally he doesn’t see patients in the hospital when they are in post op he will certainly be stopping by and keeping an eye on me.

Sure enough, a few days later Dr. V reached out and asked that we chat. An appointment was scheduled and thankfully for me it was just a phone call. I’m not sure if I could have been so honest if we saw each other’s faces. I was able to tell him all of the things I was feeling. We re-hashed some moments in the hospital and at home when I felt like I wasn’t being heard. I’m not totally sure he remembered or took ownership, but it was good to get it off my chest. I won’t go into detail of all the things that happened as that would take me forever, but I think he definitely learned a few things from my experience. He re-iterated to me how humbling it was for him last year. He had gotten used to doing hundred’s of ileostomies without problems. I think when my complications kept happening it rattled him. To be honest, I think he could use a few more humbling experiences, but best to have a surgeon who is completely confident. He did say “I think it would be very hard to top the complications we had last year Jen.” I told him I didn’t have any hard feelings and he said “you should, that was awful!”.

We talked through some surgery details that I will speak about in a later post and we hung up on a pretty good note. I still do not have a surgery date, but it will be soon after January 5th. There is some coordination that needs to be done with the Dr. B (GYN surgeon). I did get a message today thanking me for my patience and that it’s been unusually busy for them in the office. I hope I get a date soon. I think it will help me mentally to have something on the calendar.

Lastly, yesterday I had an appointment with a different Dr. B. He is my hematologist who has followed my iron labs for years. Usually once a year I need a series of iron infusions due to my Crohn’s and inability to absorb iron. My iron and iron saturation are very low right now, but my ferritin is high. This tells us that my body has plenty of iron to use, it just can’t get to my blood stream. There is too much inflammation from Crohn’s going on and the inflammation is holding onto the iron. It’s unfortunate for sure and nothing can be done right now. We just need to get the bad colon out and hope that my body turns itself around. It’s pretty darn exhausting when your iron saturation is at 10%. He’s concerned and will continue to watch me closely. My WBC have also been trending up getting more and more beyond the high range. Not something he likes to see and assumes it’s inflammation or a possible infection brewing since my neutrophils are also quite high. I have no signs of infection, but will need to keep an eye on things.

Anyhow, Dr. B and I talked about the surgery coming up and he gave me a little kick of reality and helped me understand a few things more. He’s an oncologist/hematologist. He deals with all kinds of blood disorders and blood cancers, but all kinds of other cancers too. He bluntly said “get that colon out. No good happens with an unused colon. It will deteriorate, the cells will turn bad you and you will get cancer, I’ve seen it enough.” Alrighty then, point taken.

I honestly don’t even know how to start this post. I’m beginning to think I pissed off a lot of people at one point in my life and this is payback. After an awful month of urgent appointments and waiting, my colon and several other parts of me are getting removed in 2 months.

Remember in August when I told you the sad news that Liza, my ostomy bag, would be with me forever due to Crohn’s progression? I topped that worse news sharing that my colon and rectum needed to come out at some point. Colon’s don’t survive well if they are not being used and lead to horrible complications. Then, on October 4th I made a plan with Dr. G that I was physically and mentally not ready for that type of major surgery. We made a plan that we would do this surgery in late fall of 2023.

Well, that plan literally lasted less than a day, or maybe even not that long. The day before (Oct 3), I had a hip MRI for my right hip due to hip pain and a summer of PT that was not giving me results. I had hip surgery 5 years ago and issues popped up again. The MRI did show issues with my hip, but the bigger news was that it showed a very large cystic mass in my pelvis. I had an urgent call with my hip Dr that I needed to see a gynecologist right away as the radiologist could not determine if this mass was benign. I had Dr. G look at the MRI and he brought it to his abdominal radiologist and neither of them knew what it was either.

I quickly got into a gynecologist who had already talked to a GYN/Oncology surgeon and told me that this mass needed to come out and be biopsied. They sent me for a CT, did tumor marker blood tests, another ultrasound (mass was too big to see on ultrasound), and a second MRI more focused on that area. I had a consult with the GYN surgeon who is excellent. She is incredibly thorough, personable, responsive, and I feel I am in great hands. Thankfully, she quickly calmed me down at the consult and after finally getting the last MRI she is confident (she’s an oncologist so very trusted) that we are dealing with a benign mass. It’s very big and resembles that of a spider web. Basically a cystic mass with walls, but not an ovarian cyst. It lies outside the ovary, but within the pelvis. However, within in it, is a more traditional ovarian cyst that has been pulled in. There are no nodules, tumor marker tests were fairly normal , CT showed no spread outside to lymph nodes, all pointing to benign pathology. That being said, it needs to come out. It’ll keep growing and may attach to other organs, is causing symptoms ( I guess all of the Crohn’s pain I’ve been having is not just Crohn’s) and does need a biopsy so they can confirm it is what they think it is- a peritoneal inclusion cyst.

I LITERALLY CANNOT MAKE THIS SHIT UP. WTAF?!

Dr. B (GYN surgeon) would ideally like to do this in December due to its size. She wants me to be comfortable and since I’m not a big person, this thing is taking up quite a lot of real estate. If it could be done laporascopically I would agree to that. But, because this is how my life rolls…. it needs to be done as an open surgery. I have too many adhesions and it’s about the size of a grapefruit. It’ll maybe be like a c-section. She will take the mass, right ovary, and what else is tbd. I have learned FIRSTHAND that surgery planning can go out the window very quickly once that first cut is made and the surgeon sees exactly what they are dealing with.

Are you ready for the worst piece of news? Well, worse news definitely could have been that this mass is malignant. After several discussions and agreement by me, my planned October 2023 proctocolectomy has now moved up 10 months to January. No surgeon, nor patient (me) wants to do 2 open abdominal surgeries in such a short time span. So, sometime in early January (date should be set soon) both Dr. V and Dr. B will tag team and do one incredibly long surgery to remove my colon, rectum, mass, ovary, adhesions…. They have agreed to let me get through the holiday’s. They didn’t really have a choice in my opinion. We have too many things we are looking forward to which I won’t let be sidelined for this surgery. I should add that if Dr. B was at all worried she would not let me wait.

I am going to stop this post here because I am still very much processing this. The tears have been flowing, the anxiety is through the roof, and my head is exploding. Soon I will share with you the incredibly supportive, emotional appointment I had with Dr. G, the heart to heart I had with Dr. V just today to discuss some things from last years surgery I needed to get off my chest, a surgery date and details of what I need to expect, what not to say to someone who is going through something like this, my attempt at finding silver linings, and more.

My blog will get busier over the next few months so please stay tuned.

For now, because I have to somehow add some sort of humor into this mess, I have named my mass “Charlotte”. Seems fitting since she looks like a web with a spider inside. I just hope she doesn’t eat Liza in the process as we wait for January.

These were several unsettling weeks I could have done without, but other than the surgery piece, I am so thankful that all tests are pointing in the right direction.

It’s been a month! I meant to post these pictures a few weeks ago, but it has been a little crazy around here. Lots of good things with traveling to Oregon for college visits and a trip to Baylor to see Emily. Such fun times! Ryan has submitted six applications with one to go. Emily is doing amazing down in Texas with her sweet roomies, awesome apartment, and seems to be enjoying a lot more social time this year which I am so thankful for! Pre-med majors are tough! I was getting worried she was putting her nose in her books too much and while she is still doing that of course, she is definitely enjoying this year the most so far with friends.

It has also been a month of multiple appointments and tests. I have so much to tell you all, but I want to get all of the info first. I have one last imaging test tomorrow, will speak to Dr. B (yes, a new third Dr. has entered the picture) and update all of you next week. Stay tuned. It has been a lot to process, but I’m in great hands.

Anyhow, from the bottom of my heart I want to thank all of you for supporting Ryan with his Bear Hugs campaign that in the end provided 89 Ollie the Ostomy Bears to kids at Children’s Hospital of Colorado. We were able to meet three ostomy nurses outside the hospital on delivery day and one was brought to tears with Ryan’s campaign! And then I cried, lol. So fun loading the bears into a giant rolling bin and being part of this experience. Ryan was so happy to see such an amazing reaction and it felt so good to him to make this huge impact.

Just as I asked Dr G. to not sugar coat 6 weeks ago as he gave me scope results, he pulled through again… I said “I will never make the decision to do surgery so you need to just tell me when I should do it.” “Alright then…” More on that in a minute.

First, I want to tell you about the good news! Thanks to all of you and so many other people who don’t follow my blog Ryan has secured 89 Ollie the Ostomy Bears to be delivered to The Children’s Hospital of Colorado. This is AMAZING! We are so excited with the impact this will make to kids and the wound and ostomy nurses as they educate kids on life with an ostomy. They are in the mail as we speak and will be hand delivered by our family in a little more than a week. I will post pic’s when it happens! This whole process has been very helpful for me mentally and someday we hope to take it to a bigger level with sponsorship/matching or something.

Since I last wrote I had a zoom meeting with my surgeon, Dr. V and an in person visit with Dr. G. I have received a lot of information that has been hard to hear, but also very helpful. It turns out that the reason I need to have my colon removed isn’t totally because of cancer risks. When you have a permanent ileostomy (like I do now) along with a diseased colon and rectum, it all needs to go. Leaving those parts in when they are not being used can cause some terrible complications on top of cancer risk. Seems that rectal cancer is a big concern as well as the organs just dying/leaking, etc. Colorectal surgeons never leave them in. Sometimes you can remove the colon and keep the rectum and attach the small bowel to the rectum to defecate, but that is not the case for me. My rectum is very damaged.

Dr. Vogel is a bit more anxious to get things out and wants to do it very soon. Or, in his words at my “earliest” convenience. That being said, we talked a lot about the complications I had last year and he completely understands my hesitation. However, he doesn’t want to wait too long which could lead to more complications. Dr. G is a little more relaxed and ultimately “we” agreed that this is going to happen around 1 year from now. Both of them want me to be mentally ready for it more and while waiting could be risky, I’m not ready.

We talked a lot about my surgery last fall, the continued disease despite diversion, how aggressive my Crohn’s is, and some things that I MUST be very mindful of in the meantime. There are certain symptoms I need to look out for and if those are happening I will go under the knife sooner. Dr. G feels comfortable with a year and while Dr. V might wish it could happen sooner, they both feel I am in an ok spot right now.

I got a little insight about what surgery will be like and that was not very fun to hear. It will be another open incision where they remove the colon and then “carve” (Dr. G’s terrible word, but he couldn’t think of a better one lol) out my rectum. Surgery will be long. Recovery will be tough.

Dr. G and I talked about a lot more. When the colon goes, we still need to treat the small bowel disease. There is probably a 30-40% chance it will return to my small bowel again. That is how NASTY this disease can be. Skyrizi, a new medication, was recently approved for Crohn’s. When he can get his hands on it he will have me on it very quickly. We will also need to scope my small bowel every year. He said that while the colon stuff is hard and aggressive, the part he worries the most about is my upper small bowel disease. I have disease in my duodenum. It is not active now, but has been in the past and I have a lot of scarring there. This area is very hard to do surgery on so according to him of all the crap I have going on, this area gives him the MOST worry. Ugh.

Anyhow, I really do think I am in great hands. Both appointments were tough, but Dr. G especially was very comforting and thoughtful as he always is. He spent a lot of time with me and we talked through a lot. He was very concerned about the mental piece and we spent a lot of time talking about that. I don’t think you get that from many doctors. He helps me smile a bit and lightens the mood. Dr. V is great too. He has a very dry sense of humor which I enjoy, but he’s a little too blunt sometimes. I suppose an important trait for a surgeon though…

So, I guess one year from now I’ll say goodbye to more of me. I will have a “total proctocolectomy.” Feel free to let google guide you through what that is. If things progress in the next few months the plan is to do this right after the holiday’s. Any other time will be extremely hard for me given Ryan is a senior, we have a huge summer trip planned, and then college send off. I just want to be in control of my decision of surgery timing unlike I was last year.

Below I am sharing an email that my son Ryan wrote. All of your support to me has been so wonderful over the past year. I hope that you will consider passing that support on to pediatric patients at The Children’s Hospital of Colorado. Having my ileostomy has been so hard for me, but my heart truly breaks for young children who have to deal with this too. Over the past several weeks Ryan and our family has created a partnership with so many to make this campaign come to life. The nurses at the hospital are receiving our efforts with open arms and can’t wait to finally bring Ollie to Colorado for the first time.

As quoted by their clinical manager “This is an awesome project and I am thrilled Children’s can participate- the more we can normalize the complex medical needs of our kiddos, the better we can facilitate healthy coping, best engage the patient and caregivers, and promote a positive ostomy journey.” Thank you so much!

Now to Ryan’s email….

Hello Family and Friends-

Thank you for taking the time to read this. I have created a fundraiser called “Bear Hugs” that will provide ostomy patients at The Children’s Hospital of Colorado with a bear named Ollie the Ostomy Bear. For more information on what an ostomy is, Ollie’s history, and why this is important to me please continue reading.

Imagine being told by your doctor that your body isn’t working how it should be and a surgeon will need to cut a hole in your belly. This hole will have a bag attached so when you need to go to the bathroom everything will collect in a bag for you to empty into the toilet. This can be very scary for most people, especially for a child. This is a major change for kids that they probably don’t quite understand emotionally or physically. They will feel “different” from their friends and have to learn how to adjust to this new life.

After her ostomy surgery in 2015, Dawnette Merideth searched to find something to help cope with the possibility that she may have her bag forever. She eventually found a stuffed bunny with an ostomy. When she received the bunny in the mail, she felt so much better. This inspired her to come up with an idea to provide others with the same level of comfort. She soon developed Ollie the Ostomy Bear which has since been donated to thousands of ostomy patients throughout the U.S.

When my mom had ostomy surgery last year, I had no idea what an ostomy was. I eventually learned how complex it was, and how difficult it must be for even an adult. I couldn’t even imagine what it would be like to be a child and have to have an ostomy. Thinking about this I decided that I want to help children cope with surgery and provide them some comfort along the way. I want to provide children in my hometown with Ollie the Ostomy Bear. By reaching out to the Children’s Hospital, I learned that they have 8-10 new ostomy children each month and have never received any Ollie’s. I told them my idea and they are very excited. By partnering with Dawnette Meredith and the Wound and Ostomy Clinic at Children’s Hospital, I have created a fundraiser, called Bear Hugs. If you click the link below you will have the opportunity to help me help as many kids as you are able to. Each bear is $30 and when you make your donation, Dawnette will send the bears to me. I will then bring them to the hospital and each new ostomy patient will receive Ollie.

Thank you so much for your willingness to help reach my goal of providing enough bears to the hospital as I possibly can! For questions, you can email me at ryan.kaiser16@gmail.com.Please click the link below or scan the QR code to donate to Bear Hugs.

Bear Hugs Donation Link

Sincerely,

Ryan Kaiser

Today is September 2nd and marks the one year date of getting my stoma (Liza). Actually… the one year date of getting my “first” stoma. The first one, who we called Waldo, left us on Oct 21st. He completely shriveled and disappeared under my abdominal wall leading to major surgery and the formation of Liza. Anyhow, I read blogs as well and follow some social media groups about ostomies. Some people honestly celebrate yearly and have “stomaversary” parties. Ummm… try and wrap your head around that. I will say no more.

One thing I did celebrate yesterday was our 22nd wedding anniversary. Craig and I went out to a nice dinner in Denver and enjoyed ourselves. Last year I was in the hospital and on the starvation/pre surgery diet. I did manage to secretly scarf down a Crumbl cookie in the morning which was funny at the time. I was hiding it from the nurse.

I finally heard back from Dr. G on my questions. Not being able to complete the enema’s had nothing to do with why he couldn’t see half of my colon. The mucus build up is coated to the walls. Mucus will continue to build with a diverted colon so future colonoscopy biopsies will always be compromised. He did give me some statistics on colon cancer risks with Crohn’s and PSC. Baseline is 10% and then it increases from there with your type, severity, longevity, etc. of disease. I am definitely above the 10% but he couldn’t quantify for me. Maybe he knows and wants to stay positive?

When we talk about cancer risks most of us women know that we have a 1 in 8 chance of getting breast cancer in our lives. So, some might argue the fact that it’s similar to my risk for getting colon cancer. We don’t just remove our breasts because we are not liking our 12.5 % chance. It’s different for me. While I 100% realize diagnostic tools can fail and not detect everything leading to aggressive breast cancer with poor outcomes, there unlikely is a build up of plaque, mucus, or debris that is clouding the real picture in order to see a lump. If a lump is found EARLY, it can be removed and odds are (yes, not everyone has this luck) after chemotherapy, radiation, or excision the cancer has a decent chance of not spreading as long as you don’t have underlying risk factors. Some elect to do a mastectomy which makes their chance of survival even higher. Breast cancers from our parents generation is a different story and thankfully with the advancement of medicine the prognosis is decent these days. I’m thankful insurance covers yearly mammograms.

I am not undermining other cancers believe me, but I want you to understand that my yearly colonoscopy will not be accurate and my story is different. Annually, Dr. G will blindly take biopsies and hope that he got the right spot. If colon cancer is found in a person with Crohn’s disease their survival rate is very poor. This is because if the tumor is removed, the surrounding tissue is already so damaged that cancer cells are probably brewing everywhere. The tissue cannot just heal itself. It is too damaged. Colon cancer alone, without Crohn’s or Colitis is also very curable if caught early. The tumor can be removed and because the rest of the colon is healthy it can recover from surgery and most likely be fine. So, while my relatively unknown odds might not seem high to you, to me it feels a little like a ticking time bomb.

That being said, he did tell me that I can do this “when I’m ready.” Hearing that made it seem more real. Like it’s going to happen someday. There is no “if”, but “when.” He said many wait quite a few years, but that the reason to do it sooner would be for progression of disease. So, I likely will end up making my decision based more on my symptoms than I will about the cancer risk. We will see. There is nothing more that can be done to heal my peri-anal Crohn’s. I guess now that I think about it, that might be more of the ticking time bomb I’m talking about. I have symptoms. I get pain daily. I get blood. It hurts to pass the mucus which probably happens 3 times a week. That will likely get worse.

I just pray that this can wait a few years. With Ryan’s senior year just starting and then going off to college next year I don’t want to miss anything. I missed so much last fall for both of my kids. Emily has things going on as well and we have plans together as a family next summer. Regardless, it’s hard to hear that colon removal is inevitable though. It was also hard to read Dr. G’s visit notes from our call. Hearing that my chance of reversal is zilch on the phone was hard enough, but seeing it in writing stung a bit more.

I meant to explain more about my liver disease PSC in this blog, but it’s already too long. I will do that later. For now, take a look at the photo below. My one year marker with a stoma. As you can see an ostomy bag is quite large and cumbersome. It takes up a lot of real estate on my abdomen. So many emotions around looking at this daily…. I know people have to wear appliances for their health conditions. That is not easy either. It’s just the fact that that bag fills up with digested food for me to empty 6-8 times a day that is different for me.