Life with Leana

Loving LIFE with Lynch and after Colon Cancer and Colectomy

Ulcer in the Rectum at the Anastomosis

Well this ulcer doesn’t seem to be healing on its on. My surgeon that did my Colectomy performed a sigmoidoscopy which revealed that ulcer. Biopsies were taken. I was prescribed a medication that I take 4 times a day- no NSAIDS- and still experiencing discomfort/pain as well as blood loss. Seems the sigmoidoscopy I had done probably caused it to flair again. We did get the biopsy back and NO CANCER!! But I have this bleeding ulcer!! And I’m going out of the country for 7 days in a week. I’m starting to freak a little bit as I can only take Tylenol and it doesn’t seem to help the pain when it’s in a flair stage. Different food and a few alcohol be enrages could send this screaming!! Probably will avoid the alcohol but i have to eat!! So I must have something for an emergency- that won’t knock me out! She is going to call me something in- she didn’t say what- most pain medication causes constipation but since I have no colon that isn’t an issue for me- if you know what I mean.

I already take 40mg of ommeprazol and she upped it 80 mg- 40mg 2 times a day. She says the acid in my stomach through my small intestine hits my rectum and it’s a different type of tissue which can cause the ulceration. On top of trying to heal from surgery. So I’ll do whatever she says for now to try to get it to heal. She said the next step would be cartelizing the ulcer. Surgery is seldom needed to fix this and is a last resort. . WELL SURGERY SCARES ME TO DEATH- I didn’t have a good experience the last two surgeries so I don’t want anyone going back in me for anything!!

Living Life with Leana is always an adventure. I appreciate my husband more and more every day. He makes my life special! Life is good!!

Always remembering my friends and family who are currently under going treatment for cancer or any serious illness, those who have decided not to pursue any more chemo and those who have gone to be with their maker! God. Bless You and your Families!

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LIFE IS A HIGHWAY- I want to ride it all night long!

I can’t believe it’s been so long since I posted. Time gets away from you. So much has gone on since I last posted. Since my 14 year Survivor post I have gone through 4 rounds of iron infusions- a pill cam test and just yesterday a flex sig scope. I’ve had issues with iron deficiency anemia before. A couple of years ago I had the iron infusions and they never found the source of the blood loss. Seems this time it’s probably due to the ulcer that was found at my anastomosis and the amount of ibuprofen I’ve been taking. They think that will heal on its own with stopping the ibuprofen and any other NSAIDS. So Tylenol it is!

I AM PROUD TO ANNOUNCE I’ll be a grandma in March!! I’m more than excited! Anyone who has faced a life changing situation whether it be cancer a near death experience etc… Has certain things they want to accomplish- see – before their time is up!! Well this is one of mine. I cherish each and ever moment and event and to be able to experience this one – I’m just blessed and keep being blessed daily regardless of all the curve balls sent my way. I love my life and living it and IT JUST KEEPS GETTING BETTER!!

Prayers and Hugs to all my family and friends who continue to fight cancer! To you and everyone – I say “live each day as if it’s your last” as you never know when that day may come. Only GOD does. Enjoy your life while you can.

Love ya all!!

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FOURTEEN YEARS NED COLON CANCER SURVIVOR

Yep 14 years ago at the age of 36 I was having surgery for stage 2 colon cancer. That’s seems like yesterday but at the same time seems like forever ago. I’m so thankful I had a good physician – Dr. Ronald Stephens and surgeon. Dr. Moses. Everything went perfect. I’m thankful to be here today and have loved every minute of my life – even more so since a cancer diagnosis. Wherever you are in your cancer journey- just take it day by day and live each day to its fullest. NO ONE KNOWS WHEN IT MIGHT BE THERE LAST- cancer or not!

My kids were 16, 14, and 7. They are now 30, 28 and 21. There were days when I worried I wouldn’t see them graduate high school- but I did. Then college graduation- I did. Now the oldest just got married. I don’t worry so much about making it to special events – but I cherish each one and Thank God he’s allowed me to be a part of each and every one of them.

It’s so important to know your family history and pay attention to your body. Both of these played a part in my diagnosis. No one knows your body like you do. So if something isn’t right keep pursuing until you are satisfied. You are your best advocate. Family history- my dad had colon cancer twice- the first at age 42- with a long line of CC in his family. We were encouraged to have early scopes but never genetic testing. I was scoped 4 years prior to my diagnosis. Every 5 years was what I was told at the time. So I was good. NOT. Four years later I would have genetic testing done to reveal our family is LYNCH or HNPCC. Our mutation is MLH1. Our youngest is also Lynch and gets scoped yearly started at age 20!

So stay on top of your health and your screenings. LIFE IS WORTH IT!

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Mother’s Day weekend at the Beach

It was a wonderful weekend at the beach. A lot of eating and a few mixed drinks and couple of cold ones on the beach. I had some concerns on how the beer might affect me- being colon-less. Not really an issue- I think the trying to make sure I ate something when I drank was really more of an issue. The more you eat the more you poop- know what I mean?

Friday was cloudy all day. Didn’t keep us from sitting on the beach and listening to some music- searching for unique shells and my newest passion- sea glass!! Why have I not searched for sea glass before now??

Friday for lunch we went to one of our favorite restaurants on the island- Stingarees. I had the grilled platter with a mixed drink. The best part about lunch was my youngest son(my LYNCHIE) proposed to his girl friend. Another daughter in law in my future!!

Friday night I crashed early- was up several times in the night for my potty trips. Too much food!

Saturday was beautiful- well the sun came out. Time on the beach once again and we all got a little sun kissed! We had our SPF FOR THE BODY AND LIPS! Soaking up that Vitamin D was priceless. I did have a couple cold beverages on the beach. That evening we went to Steve’s Landing and it was very nice. Our first time to visit this eating establishment. And my drink was a coconut margarita- yes they make coconut tequila- it was wonderful!! I had a grilled plater once again. Still did not stop the night time potty visits.

YES I pooped more on my adventure- but I wouldn’t have changed it for the WORLD. You have to take the good with the bad. I wasn’t running to poop all day long- just once I got ready to sleep. I can catch up on sleep anytime!!

So all and all my fears of enjoying a few social drinks with friends was once again NOT WHAT I HAD INVISIONED. Life without a colon hasn’t been that big of a deal.

Later friends! HUG YOUR MOMS- every day should be Mother’s Day!

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6 weeks after Colectomy

just let me say that adjusting to having NO COLON has not been anything I expected. Seriously- I had envisioned not being to get to a restroom, not being able to hold the desire “to go” etc…. All these crazy thoughts you get because you’ve researched it online and found more negative than positive. Let me give you some advice- if you are looking for information on line- try to find someone within legit groups that have had the exact same procedure you have. I had an ileorectal anastomosis. Which means my ilium (small intestine) was reconnected to my rectum. THERE ARE OTHER PROCEDURES- all are not alike as far as outcome and output- if you get my drift.

I was afraid that I wouldn’t be able to control my bowel habits and would have to change my way of life. I love traveling- even if it’s just to antique shop an hour away or to gamble at the boats 3-4 hours away! I was bound and determined not to let this “no colon” interfere with my life!! GUESS WHAT- it hasn’t.

I will say recovering from the general surgery itself has been …well….an experience. I had a lot of adhesions- the worse being in my pelvic area. I still have pain and discomfort in that area. Now I was cut open from chest to pelvic (3rd times the charm) and the pelvic is the only place I’m experiencing any pain/discomfort. My original complaint was the pain in my right side mid section- liver area. Before surgery the pelvic area was more painful than the upper right quadrant. Maybe because I was taking laxatives to relieve the discomfort in that area. Which worked. My small intestines was adhere to my liver and twisted back under my back- uh I think that might be cause for the pain I had been experiencing there as I NO LONGER HAVE THAT PAIN!! At all!!!!!

Do I miss my colon–HELL NO!! Do I feel better than pre-surgery- HELL YEA!! Do I poop 12-15 times a day- for real?? NO WAY!! I’m glad to say maybe 4-6 depending on what and how much I eat. Am I eating regular food?- YEP! I still haven’t tried beans- I love refried beans with Mexican food and black beans and my moms red beans!! Well I did have a little refried beans with my taco salad the other night- no problem- but it was a small amount! MILK- is a different story- if I eat cereal with milk- it affects me although I’ve never had a lactose problem- maybe it’s the Cheerios instead? I’ll have to experiment. It’s a trial and error type situation – and over time. I had my first salad last week- lettuce and tomatoes with ranch n cheese- it was so good. No problems.

NOW LETS TALK rectal issues. I love chips and salsa- remember what goes in must come out and with no colon it comes out quicker. You will have some burning with this. Your choice like anything else- you decide if the aftermath is worth the enjoyment of that taste- for me it is- on occasion!! And I have not tried fresh salsa yet as I figure that is more potent. BUT I WILL!!

For the rectal care I have found an over the counter “recti-care” that has 5% lidocaine in it. It’s like 30.00 at Walgreens. Only a few places sell it. You might can get a script from your doctor for something else cheaper- but I had a sample and it worked good- so it was worth the purchase. Had I not tried it in advance I would have never spent that amount- a little goes along way.

REMEBER- this post was written 6 weeks post surgery- some of these things I would NOT try right after surgery!! ALWAYS talk to your doctor about your aftercare and how soon to try different things.

NO… MORE…. COLON!!!!!
Loving life – every minute of it!!
Later!!

Email if I can help with anything 365daysoflivingwithlynch@gmail.com

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Reglan (metoclopramide)

Ok so maybe I misspelled the drug I was given for the gastric reflux I was having after surgery in a previous post. This medication did eventually work. If I would have taken it correctly in the beginning I think I could have saved myself several puking sessions. Live and learn. I also learned that FOR ME continuing to take this drug after that episode of my post surgery was over only caused me more distress in my small intestines and rectum. It caused cramping and gas – and trying to adjust without my large intestines (colon) I didn’t realize at first that it was the medication. After talking with my surgeon I completely winged myself off the medication and those symptoms stopped!! Hallelujah!!!

Finally on to brighter days!!

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HOME AT LAST

Wednesday- 19th-There is no place like home! And boy I was so glad to be home. The ride home was rough- a lot of bouncing and bad roads. It’s lunch time so I opt for a sandwich. A lot less than I was getting at the hospital. No cheese- just bread- I eat the whole wheat white bread- lil mayo and sliced ham. Found out later no WHEAT! I eat about half of that. My tummy is rumbling before I ever eat. I rest. I have chicken noodle broth for dinner. I’m just not hungry and finding it hard to drink or eat. It feels like it’s just there in the middle not going anywhere. During this time I am still going to the RR.trying to snack on crackers and nibble on a banana- bananas are acceptable- ripe- lil over ripe is best. Now when I say I’m going to RR it’s liquid- but I know things are working and passing. So I’m not fearing a blockage. I’m feeling miserable – bloated- and like I need to throw up and would feel better if I did- but I’ve just had major abdominal surgery. I was cut from above my belly button to my pelvic region. They have dug, probed, tugged and pulled my insides and have 30+ stitches. I don’t want to hurt that healing process by puking. My husbands says”try not to throw up” really- I’m trying to avoid that- but belching feels better. I’m up and down and then I PUKE. Man do I feel better. I’m in the RR so the convenient place was the tub! It was green gastric stuff- just flowed right out of me like I was possessed or something. Man I can lay down and rest now. It’s after hours so we call the after hour number for the doctor. Dr. Patel says he will call something in and to revert back to just liquids. It’s midnight- we don’t have 24 hour pharmacy service. Probably having a reaction to the anesthesia. Well I suck on Popsicles at the advice of a dear Lynch friend who has also had her colon removed and has a little bit of trial and error under her belt. I proceed to throw up in the middle of the night – but not as bad. I didn’t even wake my husband up- just left it in the tub for him to clean –lol! Man does that stuff stink!! I’m thinking- did I come home too early??

Thursday 20- I talk to the assistant who says they want me to wait and see if things clear up with out medication. At this point I haven’t thrown up anymore . The doctor calls and says I’m not hurting anything by throwing up- and feels it’s a reaction to the anesthesia. If it persist they will get me something. My husband ask that they go ahead and call it in as it’s fixing to be the weekend and we don’t have 24 hour pharmacy where we live. Did I mention we are nearly 2 hours away and I don’t want to make that trip again?? No throw up Thursday.

Friday 21st-The following day I get some meds called in. By the time I get it – and take it- I’m already feeling the feeling again. I take one of the meds and immediately throw up. Not just one gulp but three times when you feel it all the way through. Man this hurts but again I immediately feel better. I let the assistant know (open communication via email- the BEST) and I inform him I wouldn’t be taking it if it’s gonna make me throw up. He assures me I’m not hurting anything internally if I throw up just make sure I replenish what I’m throwing up. I can’t drink that much fluid. I get ensure – no whey products- soy is fine- preferably ENSURE. I can taste ensure every time I stand I belch and taste it- yuk!! I can’t drink it. So at this point I’m feeling oh shit I’m going to get de-hydrated. They are going to have to put a GI TUBE IN AND PUMP MY STOMACH- the ride back to Dallas is going to kill me. Lord just please let this pass. Where are my Popsicles??

Saturday 22- pretty much the same. No throw up. Up and down and belching and feeling like crap. Still pooping and sipping broth and potato soup and Popsicles. Had my husband get me some pedialyte. I have this online group of wonderful ladies from all over the states I’ve met in person through different events through Colon Cancer and Lynch Syndrome events. They are helping me through this with advice and suggestions etc. They are wonderful!!!

Sunday 23- yea it’s pretty much still brewing. I’m feeling it again and think- I’ll try the other medicine. Immediately I throw up. WTH!!! Ok the gastric fluids are out- let’s start over with the first medicine (regalan)that is suppose to get the gastric fluid out via the intestine NOT THROAT- that I thought caused my throw up the first day I took it. Lo and behold it starts working. I proceed to call the on call doctor Sunday night/Monday morning early as I’m figuring I need to go in and per my friends advice- wouldn’t it be easier to go early in the morning hours when the highway isn’t so crowded? The doctor calls back and said he will consult with my doctor when she gets back and come up with a plan and get back with me. By this time I feel a tiny bit better- don’t feel the fluids building up but am not hungry or thirsty. I’ve lost 10lbs since I got home on Wednesday. I’ve already emailed the assistant so he would have the email when he gets in. I have NO FEVER- no bleeding, not hot to the touch and I’m pooping. All should be good??

Monday- 24-The assistant replies to keep taking the medicine every 6 hours and come in the morning to see Dr. Boostrom. I’m able to eat and drink a lil bit more and have a lil more energy. I might make it. No more throw up. I pretty much rest.

Tuesday-25 I wake up hungry- yes hungry. I cook 2 pieces of toast and eat one- but it tasted so good. I take crackers with me to the doctor appointment and mKe it just fine. The trip was rough but not as bad as the initial ride home. The doctor checks me out and things look good. She checked for a hernia- didn’t feel one- my incision looks good-I’m past wound infection stage. She says she doesn’t see it often but sees it. I’ve just had a reaction to the anesthesia and the stomach was building up quicker than what I was releasing- sluggish still- but all seems to be on the right track now. Still no lifting and no fresh fruits and vegetables. No problem. Continue the medicine every 6 hours. I have faithfully taken it every 6 hours- setting an alarm to get it faithfully during the night. I do not want that again. During all this I was still trying to walk my laps around the house- down the drive etc. for the most part I did- there was probably a couple of days I did good just to walk to the potty. I can say this phase has past- on to the next!! That in itself is too another story- I’ll share it next!!

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Hospital Stay

I was in the hospital Monday 17th until Wednesday 19th. Not very long for major surgery and having your colon removed. After surgery I had a catheter, IV and leg pumps on. The GI tube was removed before I woke up. I was told I would be up and eating the day of my surgery. I didn’t believe it. I had a regular meal brought to me for dinner. Not what I should have had- I had a couple of bites of the chicken and zucchini.and roll of course. I didn’t touch the salad- I knew for sure I wasn’t suppose to have that. IF ANYTHING I WOULD DEMAND A LIQUID DIET AT FIRST REGARDLESS OF WHAT THEY BRING YOU. I DONT BELIEVE THE DOCTOR IS FULLY AWARE OF WHAT IS PREPARED AND SERVED. Dr. Patel came by night one- didn’t see Dr. Boostrom until day 2.
I started getting Coumadin shots the first night as well as some eye drops and a patch for that scratched eyeball I got after surgery. Apparently when coming out from anesthesia I rubbed my eye too hard. My glucose was 167 and was given insulin. I’m not diabetic but for the healing process all levels need to be in line- or something to that matter.
Didn’t sleep real well although I wasn’t in pain- my pain was managed very well. I think I had just rested so much during surgery that I wasn’t sleepy- LOL- is that possible?
I walked a lil bit- not far and pooped night one!! Amazed at what the body can go through and start functioning again so quickly.

Day 2
Dr. Patel and Dr. Boostrom was by early. Everything went well with the surgery. Did a lot of scar/adhesion removal. My small intestines weren’t kinked or twisted but were adhered to my liver with adhesions. Tucked back under my liver- explains the pain I was having in that upper right quadrant.
Spoke to the dr about my meal I received and she had the nurse change that to a soft diet instead of regular. It was still more food than I expected to have – I nibbled a lil on the stuff I liked and avoided the other. Steven of course took the deserts I didn’t eat for his snack later.
They removed the catheter and leg pumps. IV fluids disconnected but the ports were left in. I had one in each arm. Still having blood sugar monitored and insulin as needed as well as Coumadin. I continued to walk around the nursing station. The first morning trip resulted in poop running down my leg and me putting it in fast gear to get back to the room. They got me some pads to wear when I walk until I got that under control. Didn’t take long I just didn’t know that would happen. With every thing disconnected it was easier to get up and walk and go to the rest room. They provided barrier wipes to protect the tooshy! This is a must! I also got some cream for my eye as it was still hurting to where I couldn’t hold my eye open. That was all that was needed- a lil ointment.
Dr Boostrom was by again and said if things continued well I would go home the next day. YIPPEE.

Day 3 – Dr. Patel comes by. Removes my bandages and checks the abdominal block thing- they are nearly emptied. I’m going home so he proceeds to remove the needles and huge band aids holding them In place. OMG- that was bad. Said everything was looking good. Shortly after Dr. Boostrom is there, checks me out and says all looks good. Verbal instructions were given for taking care of incision. I had 30 + stitches. All dissolvable. She stated I’ve had several people in my abdominal area over the years and I must take it easy and recoup. No lifting more than a gallon of milk for first 2-3 weeks. Pain meds were given and prescriptions written. It didn’t take near as long to be discharged as it did to get me in a room.

Now for the 2 hour ride home. Extra pain med given and I make it home. I45 is horrible not to mention the road construction around the hospital.

To recap the hospital stay- eat soft food regardless, walk- ASK FOR DISPOSABLE UNDER WEAR AND PADS- use the barrier wipes, drink your liquids- pee and poop and you can go home. Don’t push to leave before your ready- because even when you think your fine- things can change by the time you get home. That’s a later post.

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PreSurgery-Post Surgery notes

I had surgery March 17, 2014 at Baylor Hospital Dallas. Dr. Boostrom was my surgeon. Dr. Patel assisted. I really liked Dr. Patel almost as much as Boostrom.

I checked into the hospital at 5:30 am. Once in my pre-op room I was given 2 Fleet Enemas. Really not bad – there was no other pre-surgery requirements. Nothing to eat or drink after midnight. I was given 2 Tylenol, 2 flexarel and 2 Celebrex.

They took me up to pre-surgery room where things went pretty fast. I had so many medical professionals in and out of my lil curtain room. The anesthesiologist and his assistance explaining my drugs for the surgery. Nurse couldn’t get an IV started so that was done when I got to the surgery room. Everything was in order and ready to go. I did receive some acid reflux medication before hand as I normally take that as I also get sick when I have an empty stomach. All areas seem to be covered.
My husband was with me- the rest of the clan hadn’t made it to the hospital yet. I’ll have to see them when I “awake”.

I get in the surgery room and let them take my glasses at that point. I wear night and day contacts and of course couldn’t during the surgery- so I had my glasses. They tried taking them before hand but I can’t see ANYTHING without them. After seeing Dr. Boostrom and knowing I was in the right place I turned them over- LOL.

The anesthesia assistant was still trying to get an IV started- was hurting me- they told me to just breath into the mask and I wouldn’t feel it- I inhaled a couple of times and that’s all she wrote. I was out.

I awoke with an abdominal block. Pain medication inserted into the abdomen via two needles – one on each side of the incision. They stayed in until I was released. I was given Tylenol and Ibuprofen piggy backed every 4 hours as well as tramadol by mouth and injections as appropriate. I woke up thinking I’d been cut down and across- like an anchor when in reality I only had the same incision as the previous two surgeries- from above navel down to pubic- about an inch further than last surgery. Massive adhesions in the abdominal cavity was very painful. The nurse was nice to give me something for that. My doctor tries to stay away from narcotics as they cause constipatin. Her means of pain management results in quicker recovery- quicker release. I also scratched my eye during surgery and it was bothering me quite a bit!

During my surgery I had a few family members with my husband. I think it was about 4 hour surgery. Steven, Shane, Tera, Dillon , my Mom, my sister Carmen and my BF Anita. They all came back to recovery 2 at a time to see me so they could head on home with the exception of Steven and my BF Anita. Did I mention Anita brought breakfast tacos for my family while they were waiting on me? So sweet. Later our best friends Liz and Mark were there. They visited for a while. I was feeling great under the influence of the surgery meds still.

More to come in regards to meals and my days in the hospital!!

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Every Day is a New experience

Yesterday I walked a little further than normal and swept the kitchen floor! Maybe that was too much. I’m a very inpatient person- I hate wasting time on “nothing”. I keep reminding myself it’s only been 2 1/2 weeks since major surgery. I must be patient. I’m back on my pain pills and just taking it easy today. I’m a Bed potato today instead of couch potato. I did stop taking my Regalan so I’m hoping the gas/pressure pain will subside. So far so good.

I did receive a call today from my surgeon- checking in on me to see how things were going. I filled her in on everything and she agreed I should stop the Regalan- ween off it. I was down to once a day so I’m hoping this will fix my issues. She also informed me I will need to call the office if I need anything as her medical assistant “Josh” has moved to another position. He was my go-to person via email. It was wonderful,the direct communication I had with him- he was good about getting with Dr. Bostroom and getting right back with me. I hope they find an adequate replacement.

All in all LIFE is grand and I love it!!

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