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!

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!

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!

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

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!!

No —–Mo——- COLON

Well I’ve had my surgery. I had a Total Colectomy and an ileorectal anastomosis- they removed what was left of my colon and connected my small intestine- to my rectum. I had massive amounts of scar tissue removed. My previous surgery left me with a restricted opening from my small to large intestine. This was causing me distress. I had been having issues in my upper right quadrant and lower abdominal area. Test had revealed the scar tissue in my lower abdominal area although test did not reveal an obstruction I had classic symptoms of an obstruction. This went on seriously for a year- bit probably since my second surgery in 2010.

WHY REMOVE MY COLON?! Simple- I’m Lynch- I have had colon cancer @ the age of 36. My dad has had colon cancer twice. My risk of a second colon cancer was decreased from 60-80% to 0%! Yes- seriously. No– mo— colon- no— mo— colon cancer. That makes me happy.

https://www4.mdanderson.org/pe/index.cfm?pageName=opendoc&docid=2133

Now yes- Lynch does affect other areas of your body- the second are for women is gynecological – and I had those removed before I knew I was Lynch due to other medical issues. I consider myself good to go!!

Lynchies MD Anderson visit

Well we had another visit @ MD Anderson Monday for my Lynch son Dillon. This was an additional visit due to the amount of blood found in his urinalysis during his last visit for his screenings. This visit he had a Cystoscopy and CT UROGRAPHY as well as more lab work. Still waiting on his lab work but the other procedures were clear. No cancer related Lynch issues. So we just watch his urine. He’s had this issue in the past before knowing he was Lynch and they never found anything then either. So we will take this good news and just work on staying hydrated. LOVE MY LYNCHIE!