Last update before surgery J-Pouch

Monday I went to Temple Unvi. Hospital to get all the information and pre-admission testing done before surgery. My friend Pat took me since I can't drive that far anymore. We where their from 10:39 am until 6:00 pm. It was a long day. I finally got home at 7:40 pm.

This what is going to happen in this order:

Thursday March 17, I have to go back down for a flex segmiodoscopy so Dr. Rombeau can see where and how bad the J-Pouch is now bleeding.

Thursday March 24, Quintin and I go down so I can be admitted in to the hospital. They need to put a central accesses line in. Because of the high risk of me needing blood during surgery. This will give them a way of getting blood  and fluids in me quickly. The thing that stinks is they probably won't knock me out to do it just numb the site. It might hurt just a tad. I also need all kinds of surgical preps too.

Friday March 25, Sometime in the morning I will go to the OR awake. So I can say hi! to my surgery and anesthesiologist. Then they will put in an arterial line in my wrist to monitor my blood pressure. The surgery could be up to 7 hours depending on what they find. Then after surgery I will be moved to ICU for at least a day. We are not sure what to except from that point forward.

I have a week to go. I can't wait to put this is all behind me. This is my last blog entry until I am well enough to type. Wish me luck. Thank you all for reading. This is last chapter for now.

My testimony of Jesus Christ

This might be weird to some people. This is something I feel that I have to do. I usual do this at church but since I will not have the opportunity do this before my surgery. I had this nagging feeling I needed to do this this way. So here it goes.

I have been a member of the Church of Jesus Christ of Latter Day Saints for 12 years now and it has taken me 9 years to really know and love my Heaven Father the way I do today. Maybe it took almost dieing two or three times before I got the hint he is the way and the only way. I am not sure but, I think I am finally on the right path. I do stumble from time to time. What I can tell you is this. I came to a point where he is the only way that I want to live. He guides me with every decision I make. It's hard sometimes, but it also very comforting too. When I feel the walls closing in on me I know he is there for me and he will help me threw it as long as I ask and even if I don't ask however, it works a lot better if you ask.

The lesson I learn is that you have to give Heaven Father your heart 100% not 99.9% it has to be all. It's like a weight is lifted off your shoulders if you really do it with all your heart. It is unbelievable what happens after you do this. It still today brings tears to my eyes. He started to answers my prayers that I thought he didn't hear. I started to feel his love like I have never felt before. You just have to completely trust in the Savior and don't look back. This doesn't mean that you won't have trials in your life. Trust me you will, they might be big and might feel like he's not there however, he is, you just have to trust in your faith. I still have trials and lots of them. It's just a matter of how you handle them now and how well you endure them. Especial now that you know how powerful his love is. You can make it threw anything if truly believe this. I have and believe this with all my heart.


I am really not sure if I am expressing myself very well. What I can say is this. I can remember that day this happen to me. I felt incredible inside full of sunshine, could stop smiling, wanted dance until I dropped and sing  praises. It was an overwhelming feeling that ever time I think of it now or talk about it still gives that same feeling.


I know without a doubt miracles happen today I am living proof of that. I would not be here today if it wasn't for my Heaven Father.  My husband and kids would of said goodbye to me in 2008. Here I am bearing my testimony for all to read.  I say these things in the name of Jesus Christ Amen.

Sharon, Quintin, Q, Adrian and McKayla in July of 2006. Before I
started to have more medical complications after a routine ankle surgery.
It was two in half years later that I found my testimony in
my Heaven Father and in his son Jesus Christ.
 This open up a whole new world for me.

Surgery is schedule for my J-Pouch revision

I just found out today that Dr. John Rombeau at Temple University Hospital in Philadelphia has scheduled my schedule for March 25, 2011. He will be doing a J-Pouch revision. Which means he will remove my old J-Pouch and make a new one. Then I will have a temporary ileostomy for 3months. I will have to go in for a second surgery to take down the ileostomy and hook the small bowl back up to the J-Pouch.

There is one complication: That I won't have enough small bowel to do the J-Pouch revision at all. I will be left with a permanent ileostomy after the first surgery in March. It's a risk we have to take because the acute blood lose could cost me my life. That is now what I have been told by my doctors now, because it's not getting better, my symptoms are getting worse and more severe.

The good thing is Dr. Rombeau said "he would do a two for one deal for me." He would fix my surgical hernia and take the small bowel down where the J-tube was inserted at from 4 years ago. He's going to release the small bowel from the abdominal wall.

I am very nervous about this surgery it's long, extensive and complicated not many surgeon do it. I guess I will just have to put my faith in my surgeon which I have and in my Heaven Father which I do then everything will be fine. That is a really hard thing to do. I must practice what I preach. Sometime that is harder said then done. I will have to fine my inter strength and do it. It just might take me a few days. I guess everyone is just going to have to bare with me until I get there.

Until my next charter. Thanks for reading. God bless everyone

2Corinthians 5:7 (For we walk by Faith, not by sight:)

Sharon Gardner's Syndrome

My diagnosis on July of 1989 I was 20 years-old

Gardner syndrome, is an autosomal dominant form of polyposis characterized by the presence of multiple polyps in the colon together with tumors outside the colon. The extracolonic tumors may include osteomas of the skull, thyroid cancer, epidermoid cysts, fibromas and sebaceous cysts, as well as the occurrence of desmoid tumors in approximately 15% of affected individuals. The countless polyps in the colon predispose to the development of colon cancer; if the colon is not removed, the chance of colon cancer is considered to be very significant. Polyps may also grow in the stomach, duodenum, spleen, kidneys, liver, mesentery and small bowel. In a small number of cases, polyps have also appeared in the cerebellum. Cancers related to GS commonly appear in the thyroid, liver and kidneys.

At this time, there is no cure, and in its more advanced forms, it is considered a terminal diagnosis with a life expectancy of 35–45 years; treatments are surgery and palliative care, although some chemotherapy has been tried with limited success

Treatment

Ileoanal reservoir surgery or ileoanal anastomosis is a two-stage restorative procedure that removes a part of the colon and uses the ileum (a section of the small intestine) to form a new reservoir for waste that can be expelled through the anus. This surgery is one of several continent surgeries that rely upon a newly created pouch to replace the resected colon and retain the patient's sphincter for natural defecation. Ileoanal reservoir surgery is also called a J-pouch, endorectal pullthrough, or pelvic pouch procedure.

Purpose

A number of diseases require removal of the entire colon or parts of the colon. Proctolectomies (removal of the entire colon) are often performed to treat colon cancer. Another surgical option is the creation of an ileoanal pouch to serve as an internal waste reservoir—an alternative to the use of an external ostomy pouch. An ileoanal reservoir procedure is performed primarily on patients with ulcerative colitis, inflammatory bowel disease (IBD), familial polyposis, or Gardner Syndrome and (FAP), which is a relatively rare cancer that covers the colon with 100 or more polyps. Garnder syndrome and (FAP) is caused by a gene mutation on the long arm of human chromosome 5. Ileoanal reservoir surgery is recommended only in those patients who have not previously lost their rectum or anus.

Frequency

United States

One person per million population is diagnosed with Gardner syndrome. The incidence of FAP is 1 case per 8000 people. The most common cutaneous finding in patients with Gardner syndrome is epidermoid cysts (50-65%).

My Note

This was my first surgery done 21 years ago. I have under gone I believe 6 surgeries since then. I have a few other mayor medical problems that have come from having Gardner Syndrome too. Now I am facing two more surgeries a revision of my J-Pouch which we hope that my original surgeon Dr. John Rombeau at Temple Hospital is able to do. I am the first they know of that has come back with a J-Pouch that has ischmeic ulceration. That are bleeding so bad that I have needed two blood transfusion in Sept of 2010 and Jan of 2011. I also needed two iron infusions. My hopes were to try to find another way to fixing this without surgery however, it looks time has run out and I will need that J-Pouch revision. I have been unable to find any information on J-pouch revisions. My surgeon has only done 10 prior to mine. So it is very rare that this happens. I am the first they know of for a J-Pouch to bleed. So it looks like they will have to make a new pouch I will get a temp. ileostomy. In 2 to 3 months they will take it down and hook everything back up as long as I have enough small bowel. If I don't I will have a permanent ileostomy and that does scare me however, I will still have my life to be thankful for.

This was my first complication after a surgery. 

Diseases: Small Bowel: Dysmotility

In the normal small intestine, liquefied food and secretions including digestive enzymes are pushed onwards by waves of muscular contraction. When these contractions are impaired, the contents are trapped, and cause distention with symptoms such as bloating, nausea, vomiting and even malnutrition. There are many causes of abnormal intestinal motility. They can be divided into two major groups:

• abnormalities of the muscle of the intestine (myopathy)
• abnormalities in the neural (nerve) control of the muscle (neuropathy)This is what I have.

Second complication

Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract

Final Note

There has been a lot of friends that haven't understand what is really medical wrong with me. I thought this would be the best way to explain it. It's a lot of medical terminology but it is accurate. This is only a few things that I deal with there are more I just touch on the major ones.

My moster Kitten

My lovable kitten has turn into a terrior. No one is save around him he plays with anything that moves or that doesn't move for that matter. He is so cute. It's like having another 2 year-old in the house except you can't put a kitten in time out.

Kids watching TV

Sunday night one by one they all sat down to watch TV together.  It's the little moments I cherish. This time I had Quintin take a  picture of it. It's these little things that keep me going and help me appreicated my life regaurdless of my trails.

Sharon's medical update on Gardner syndrome and J pouch

Not sure where to begin my thoughts are all over the place. I just found a yesterday that my blood count is holding, but they're still unsure for how long it would continue to be that way. Over the last two weeks the bleeding in my J pouch has increased. In time the corterization will stop working. Dr. Retig will have to do it again and there are still no guarantees that it will work the second time either. It looks like surgery is my only option at this point, since I  just keep getting weaker every day that passes by. I really don't know how much longer I can keep this up.

So Quntin and I decided to call Dr. Retig my G.I. doctor and find out what he thinks our game plan should be. Unfortunately he still didn't have any answers to whether it would help to do a second corterization. He could do it again and in 3 to 4 months I might still have to go in for surgery any way. The problem with waiting for surgery he told me is that my surgeon is retiring in July. Then  I would have to go to a surgeron in New York state.

I have an appointment with Dr. Rombeua on March 14. We aren't sure if he will be able to do my surgery now. This has me very overwhelmed and very scared at this time. I usually can handle things when it comes to me pretty well. I'm not sure what I am scared more about, coming out of surgery with a permanent ileostomy or that he won't be able to do the surgery at all. I've gone through so much and have overcome so much that I never thought that something like this would scare me so much in all my life. I guess in time I will find peace and comfort. I will have answers in 13 days to be exact nothing like counting it down.

My sweet little angel

My Christmas Surprise has arrived

I am in heaven right now. To have so many hard medical problems to worry about over the the last few months. It was a great feeling to go get my kitten at the Philadelphia Airport last night at 11:30 pm. He is everything I thought he would be. I am on cloud nine right now.

His name is Sir Niky. He weighs 2lbs and loves to play with anything that moves while you are trying to sleep. He actually hops on you like you see fox do. It is so cute to watch. Now our other two cats Smokey and Bandit do not like him at all and have made the clear.





Sir Niky first day at his new home. 8 weeks old

 


 

LaRae and Sir Niky



Climb the Tallest Mountain

I hope no one takes anything I write in this personally. This is something I need to do to move forward because these are very personal feelings for me. My hope is by expressing them; it will help me to become stronger for my family. LaRae’s medical problems are beginning to becoming too overwhelming, and I need to let them out. I think that I have finally come to my breaking point with all LaRae’s medical problems. Everyone keeps telling me to be positive, to pray, get her a blessing, to stop worry about it and it will all work, that she in good hands, doctors make it sound worse then what it is and the list goes on.

Now I find myself facing my own medical problems that have me so overwhelmed. I don’t know how I can possible handle both. It was bad enough trying to be strong enough for her do I have enough strength for the both of us. Does Heavenly Father really think I am this strong? I seem to find myself in tears all the time I just don’t know if I can. I find myself asking, why my life has to be so hard. Why do I always seem to have to find some kind of amazing strength to pull myself threw these trials?

I know everyone is trying to help me. I really do appreciate all the word of encouragement and the prayers. I cannot help the way I feel inside. I am not feeling sorry for myself nothing, like that. I do not want to feel like this. I want to be strong for her, for my other kid and my husband; however, right now I feel like someone has thrown me under a train. I just want to climb the tallest mountain and scream from it as loud I could.

I have never climbed a mountain, but I can imagine that, with each step, my chest is burning.  My legs feel like they cannot take another step.  I cannot breathe because the air is too thin this high up.  I feel exhausted from the climb, and when I think that I cannot take another step, I realize that I have made it to the top.  As I look out over an incredible view, seeing for miles I marvel at what the Lord has made.  It is simply breathtaking.  And then, I am startled by a touch, as I open my eyes to find a 30-inch long, 19-pound little girl, with big blue eyes looking up at me, smiling and saying, "Mom?"  That is when I realize that I never left the living room sofa.

I now realize that my strength comes from my sweet little blue eye girl named LaRae Sianna Lawley.

Thank you for reading my blog and allowing me to have moments of weakness.

Q Artic Race

Q and Quintin went with the church boy scout on an Artic Race. The boys had to push a huge wooden sled around to different station completed task and cook their own lunch. At the end they would fine which team did the best.

This was one of the first year that they actual had snow to push the sled on. The officials at the camp were much stricter with the boys on how they were dress and if they had the right gear with them. If they didn't they couldn't participate.

Q said "it was awesome!" They were his words. He doesn't mind the cold weather and loves events like this and loves to camp in any kind of weather.

Family is sick

We brought LaRae home from the Hospital last Sunday.  I got sick from a virus I picked up while staying at the hospital with LaRae good thing Quintin decide to bring LaRae home because I was sick enough they would of had to transferred me out of the to another hospital that treated adults since we were at a Children's Hospital. That would not of been a good thing.

I am still not over the virus yet and I have a major GI test tomorrow at Bryn Marw Hospital with bad weather coming should be fun.

McKayla, Adrian and Q all got the virus I had so it has been a fun week since LaRae came home. So far LaRae and Quintin have not got the virus yet I hope it stays that way. Quintin is not a fun sick person and LaRae doesn't do well with virus.  This is all we have been up too except for Q.