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Ricardo’s Story living with FAP

Posted May 01 2009 10:47pm
 
The Chavez Family November 2008

The Chavez Family November 2008

It was the middle of December when my husband had went to his yearly physically fitness check up, this is required for his job so he goes yearly to see his Doctor but it was this time he actually mentioned his family history  of Familial adenomas polyposis (FAP) and followed through with getting his colonoscopy done.  The colonoscopy was scheduled in the beginning of January and from that day on we have been through a lot and learned a lot.  He went in for his colonoscopy and came out 2 hours later still groggy mind you I have not talked to anyone I was waiting to be called back but instead he came out, I thought everything went well, I ask him “how did it go?”  He responds, “Not so good they need to remove my colon otherwise I can die.”  I was shocked, although we knew this was a possibility we were praying he didn’t have it, (FAP), and after talking about the “what if’s, etc.” he would say “Babe, I’m fine I don’t have no problems going to the bathroom and I have no symptoms.”  So we thought no, he would be fine.  Unfortunately we were wrong, it so happened that he had hundreds of polyps which a couple needed to be biopsied because they were large in size, there were too many to remove and if he didn’t remove his colon he would like his father get colon cancer and have a slim chance of surviving it.  That ride home was rough, I was so hurt, it was something I had been dreading to hear and he was I think so drugged up he wasn’t all there yet, he showed no emotion, I think also he just was thinking “o’well” I have to do what I got to do, nothing more to talk about, which is like Ricardo,  he is not much into talking or getting into detail, anyway I dropped him off at home and went to pick up our son and once he shut the car door I drove away breaking down, I couldn’t even catch my breath, this was life changing and at the time I wasn’t thinking for the best.  We weren’t expecting this outcome, we never went through a major surgery, and I only knew what his sister had experienced having her colon removed I think that is why I was so emotional towards this news.  Days past and we overcame the “finding out” phase and next was the doctor appointment for basically confirmation of what they found and to discuss our options.  Ricardo, his sister, who also has FAP, and myself  went to the appointment, the Doctor explained how the surgery was going to take place and that it should be done asap. 

After surgery finally in his room.

After hearing Ricardo would have a two step surgery, first one, would be to open him up about 6 inch’s and take out the colon, then he would have an ileostomy bag for about 3 months to let the j-pouch heal and in 3 months he would return for the take down surgery, sound familiar.., however before this appointment we had did some research (his sister and I) regarding laparoscopic surgery, alternatives, etc. according to this doctor we wouldn’t find a doctor nearby who would perform it laparoscopic.  This doctor for one was not familiar with FAP nor had he ever referred a patient to genetic counseling.  So in the office we cried a little more and Ricardo mentioned to the Doctor he was scared but knew he needed to get it done, the Doctor said, “You will be here for a long time Mr. Chavez.”, and we left trying to be as positive as possible.  Ricardo 30 years old and the thought of him walking around with a “poop bag” was traumatizing for him and to know he has 3 children and has to have a major surgery is what his fear and sadness had came from.  He is a strong person and I am the emotional one but it was good for him to get his feelings out and try to find the positive because there aren’t other options to fixing the problem.  I mentioned to Ricardo I thought it was best to get a second opinion just to do it and it doesn’t hurt anything, he was unsure he just wanted to get it over with and didn’t want to talk about it, this is his “shut out” mechanism.  After this appointment, appointments were scheduled every week, for tests and results etc, from January to March this was our life now; appointments, tests, and results, we were a mess, trying to stay strong and hope every result would turn out good, so we can move on to the next one, and they all did, thank God, in the meantime we were referred to UCSF for genetic counseling and that was our blessing, seriously.  Our confidence and our worries had somewhat subsided, the genetic counselors were great these were the first people we met who knew everything about FAP and how you get it and any questions we had they had an answer,  we left feeling good for the first time in a long time. Being in genetic counseling you meet with a genetic counselor for about an hour and then you meet with a doctor the other hour so we used this as our second opinion, the funny thing was after talking to Dr. Terdiman regarding Ricardo case we were then referred to his wife, the “famous” Dr. Varma who specializes in the laparoscopic J-Pouch surgery and is also very familiar with FAP just what we were looking for. 

FAP- familial Adenomas polyposis, an inherited colorectal cancer syndrome that is passed through families usually from parents to children.  My husband’s father had FAP, when he was first diagnosed it was after going to the doctor’s for stomach pain and after tests they confirmed he had colon cancer caused by FAP, he survived 2 years then passed away at the age of 42.  This was the first of FAP in Ricardo’s family, FAP is not a disease that has symptoms it is silent until you have symptoms of colon cancer already.  A person who has FAP will grow hundreds to thousands of polyps starting usually in there teens and will have colon cancer by the age of 40.  Signs of FAP can be birthmarks in the eyes, extra teeth, or sudden weight loss but you wouldn’t think nothing unless you have a family history of FAP and the best confirmation is by taking a blood test specifically for FAP or getting a colonoscopy which can check for polyps. So here is the thing his father passed away more than 15 years ago and back then the next step recommended was to test Ricardo and his sister the only children in the family and all of his father’s brothers and sisters to see if anyone else has FAP, the way they tested was by doing a flex sigmoidoscopy where they don’t go all the way through the colon and they can check for polyps, what they are looking for are for a lot of polyps.  Ricardo was 15 at the time and his sister 16, his sister had many polyps and Ricardo didn’t have any.  The doctor told Ricardo to get rechecked in time and his sister continued to be closely watched and had frequent colonoscopies and endoscopies to check for polyps, by 21 she had her colon removed.  Ricardo’s sister has 2 children of her own, both were tested at the ages of 10 and 11, her son tested positive for FAP, and her daughter tested negative, now her son at 13 years of age, has many polyps and will get his colon removed.  The reason the only cure is to remove the colon is because what the gene mutation causes is their colon tissue to not shed like “normal” people, our tissue in our colon sheds every 3 days and that is how we prevent such polyps and for those with FAP, their tissue never sheds it grows and grows which causes polyps (growths), even if the Doctor were to remove the polyps they would shortly return.  The polyps can produce anywhere throughout the digestive system but in the colon is where it can be high risk for cancer.  So now Ricardo at the age of 30 went in for a colonoscopy after 15 years since his flex sigmoidoscopy and finds out he also has the gene mutation. The doctor said it was likely that shortly after Ricardo had his sigmoidoscopy, his colon started to grow polyps.  We have 3 children, 2 together, and once they become the proper age which is usually between 10-12 years of age they too will get the blood test done to confirm if they have FAP. My husband calls this surgery his life saving and changing surgery, it isn’t what he wanted to go through, I mean who does, but if it saves his life then who could ask for better, also this is life changing because it opens your eyes to better health, to take care of yourself.  No one wants to hear bad news or find out something they dread but it is better to find out and know there is help then to go in and it be too late or a whole other diagnosis that can be worse.  While we were worried about our goals for the New Year with money and buying a house, and him fixing his old school car (a passion of his), we are only now worried about him surviving and being healthy, making sure he is going to be here for a very long time to live a full life with his family, a little reminder of what really matters. 

The surgery date was set March 17, 2009 @ 1:20p.m. at UCSF Mount Zion hospital in San Franscisco, CA.  We got there about 1o minutes early for pre-op and got settled in the room, we were laughing, talking, etc. in the meantime doctors and nurses came in and out of the room to introduce themselves and let us know what their part was in the surgery.  We were keeping our cool and trying our best to not worry and know in our hearts everything was going to be alright.  My mom and our son were with us also for the first week of all this for support, thank God we needed it.  Ricardo and I kissed goodbye and the surgery started at 1:00p.m., and the surgery ended at 5:45p.m. in the meantime we did nothing but wait in the waiting room.  Dr. Varma came in and said the surgery went well, no complications, and he didn’t need the ileostomy bag after all, his insides looked good and the surgery was a success.  After going to get a bite to eat and come back for about an hour and a half, I called the post op room to check on him to find out if they had sent him up to his room already or how he was doing, the nurse who answered said Ricardo’s nurse would be out to talk to me asap, that didn’t sound good.. the deal was they couldn’t send him up to his room until he was able to handle the pain and he wasn’t, after 4 hours and trying whatever pain medicines they had, they finally got him comfortable enough to send him up and we met them there, at this time it is around 10p.m. so our day was long and exhausting.

 

 

By the next day we were urged to get him up and walk.  Our night was like having a baby, up every 20 minutes for pain and to get him comfortable.  Before we knew it the doctor’s and nurses start there rounds around 6 a.m. seeing how things are, checking his vitals, weight, etc., so our first night was rough.  He was up more the second day and talking somewhat, still no foods or liquids and getting pain meds through IV about every 10 minutes.  His day was mainly up for a few sleeping for a few.  During the day his nurse came in to see if he could get up and walk, he tried and at first he was really groggy just standing there while taking his vitals he was wobbly, so we were worried about him passing out, he could hardly keep his eyes up, so we sat him down and waited a second, he asked to try again and so we (myself and the nurse) got him up and he walked to the door and back good enough at this point it was a start, when he sat back down he said he felt really nausious so we waited a minute and laid him back down, once he laid down he said he felt better.  The nurse said she would be back to try again a little later..The second time around here he goes, he did it and we were so proud of him and he sat down for a few minutes on the chair which is also good for him, moving is the way to helping the intestines to wake up and helps in preventing blood clots, etc.

His first real walk on the 2nd day

His first real walk on the 2nd day

I was so proud of him.

I was so proud of him.

 

sitting instead of laying, another good thing.

sitting instead of laying, another good thing.

 

 

 

Day 2

Day 2

 

 

 

                  

 

Day 3 and 4 were better, by day 3 he had walked and sat up more and also had a small bowel movement for the first time, by day 4 he had walked even more about 4-5 times around and we got into a routine of walking, sitting up, and then resting and doing it again a few times out the day.  He still has the catheter at this time, jp drain, and IV.  Day 4 he was given ice, he really didn’t want it but he ate about a cup for the day, half one time and half the other, before this the only thing we would do for him was put water on his lips and in his mouth with a q-tip spongy thing.  At this point he was feeling okay, and things were going as planned, no complications. (do you see his mark for the stoma in the pictures that was just in case)

 

Ricardo's incisions and JP drain...not bad...

Ricardo' s incisions and JP drain...not bad...

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 By day 5 he was in the bathroom shaving getting ready for some visitors, tiring he said but he did it.  This morning he got weighed and he had only lost a couple of pounds.  The visit with family was good, it brought his spirits up.    

Day 6 our daughters were able to come and see there daddy and that was a good visit however Ricardo started to not feel to good, just a little more pain and discomfort.  He was taken off of the IV and his catheter had got removed that morning and he started to eat broth and jello known as the liquid diet.  His JP drain was still in but not draining much.  He was taken off of the IV meds and given Vicoden for pain he had only taken 1 and that didn’t help so an hour later they had gave him another 1 but the nurse mentioned if you didn’t take 2 the first time then it doesn’t take the same effect, so it didn’t work and he was given a shot of Dilantin through his IV, although it was taken away he still had the pic in his arm just in case he needed anything thru IV which he did a couple of times this day.  His pain had came and gone throughout the day, finally he was changed to percaset a little stronger then vicoden to take orally.  The day was okay otherwise, he was passing small stools and little gas, he didn’t have no problems urinating after removing the catheter.  Other then the little discomfort and pain, he got thru the day and was happy to see our girls, they made him laugh so much he was also sore that night from the laughing.  Laughing is good for you but kind of painful after having major surgery but well worth it he says.

Getting ready for visitors, a clean shave.

Getting ready for visitors, a clean shave.

 

talking and laughing with our daughters

talking and laughing with our daughters

 

He was saying "stop making me laugh"

He was saying "stop making me laugh"

 

 

 

 

 

 

 

 

 

 

 

 

Days 7, well it was already Monday by this time and we had lots of company throughout the weekend and remember starting yesterday he wasn’t feeling well so day 7 was just a little worse, we had more company but he just wasn’t in the mood, you can see it in his face and attitude very quiet and looked a little down.  He couldn’t really explain his discomfort.  He was still taking the percaset but not on any set time.  Dr. Varma had came in and talked with him and he had discussed his discomfort with her and she said she was concerned he could be bloated or even dehydrated because he didn’t have an appetite either at this point so she wanted to make sure he wasn’t backed up with stool and that he would at least drink an ensure to get vitamins and protein because also throughout the night he didn’t really go to the bathroom much and the JP drain at this time wasn’t really draining much anymore, the nurses thought it was  probably time to take it out (JP drain).  Dr. Varma had another Doctor come in and irrigate his bottom just to make sure he wasn’t backed up, that was done with some pain and the Doctor said he was fine he wasn’t backed up and his pouch was good.  A nurse came in and tugged his JP drain a little and that started to flow once again.  The discomfort could of been a few things, gas, the JP drain being blocked, or being a little backed up, either or, he was starting to feel better and had an ensure for dinner and by the night had passed quite a few stools since then.  The same routine was being followed with his exercise he was just tired so he didn’t sit up much or walk as much but he did do some and we kept our positive thoughts going.  We had talked with the nurses about him going home the day before because as long as he was on oral meds he was able to go home but we hadn’t heard anything from the Doctor’s at this point.  I was worried about leaving quite yet because he was still feeling discomfort and pain at times without specific answers as to what was or could be causing it.  Being that we live about 2 hours away also was a worry because any problems we would be driving right back.  However Dr. Varma had suggested he stay for a couple more days because of the set back with how he was feeling. 

Day 8 doing better still drinking his Ensure but not feeling the menu.  The Doctor did his morning visit and said that we were going to try a low residue diet today and see how he does with that especially because he was feeling well and still taking the percaset but at no set time just whenever the pain would jump a little too high and before it would get worse he would take 1. Before this surgery Ricardo never took medicine unless he was really sick so pain meds was not normal for him actually he had never had pain medicine besides the very rare Advil for a really bad headache.  This day we just relaxed all alone just brushed our teeth and did our usual routine and chilled.  We finally didn’t have no company and my mom and our son had left on Sunday so it was just us, this had became our hotel for about a week and a half.  I was like the patients just on a sofa bed, I showered there once my mom left because I no longer had a hotel to go wash up at, it was no problem the nurses were so caring and nice. They accommodated me as much as my husband to make sure we were comfortable.  At this point we have been in the hospital for 8 days, and he hasn’t had no medicine thru IV for 2 days and aside from the discomfort the couple of days before he was feeling better this day and according to the morning visit from the Doctor we were closer to going home.  Okay so his first meal was salisbury steak, baby carrots, potatoes and soup.  Ricardo had been craving a gatorade, and the doctor gave him the okay.  He enjoyed his meal, eating little, but enough because he didn’t want to over do it and he drank all his gatorade.  Let me just say before this surgery Ricardo weighed 195 and had a huge appetite, he eats fast by the time I am halfway into my food he is already done, super burritos are his favorite so this was a sacrafice to eat so little, but better to be safe then sorry is what he thought.  Our night was good no complications with the food.

 

Look at him, he couldn't wait to take that first bite.

Look at him, he couldn' t wait to take that first bite.

 

Yummy!! (only for this meal)

Yummy!! (only for this meal)

 

 

 

 

 

 

 

 

 

Okay so day 9, our going home day.  We were told we would or could possibly be in the hospital for 7-10 days if he didn’t have the stoma, and we did.  We weren’t planning on going home until tomorrow but this is what happened, the day before I forgot to mention that he didn’t sleep all day although we laid around most of the day because like I said it was our first day in a while that it was just us, he didn’t sleep all day which was very unusual because he said he felt tired and he looked tired but just didn’t sleep he just laid there and he tried to nap but couldn’t.  So day 9 comes and our morning was good, the doctor came in and we confirmed our day to go home was going to be Thursday the 26th, because we didn’t drive ourselves to the hospital we had a family member bring us to San Francisco because I can’t drive in that city-too crazy, and my hubby obviously couldn’t drive himself home so we needed that same ride to pick us up, it was all set and so today we were just going to hang out one more day and wait until tomorrow.  Ricardo had slept finally till late morning and Dr. Varma did her daily check but a little later today, so that woke him up and once she left he was up and walking around the room and I asked if anything was wrong he said “no”, but when the nurse came in to do her normal vital check up and give him his pain meds, etc. he mentioned to her that he didn’t want to take it because he felt a little anxious and didn’t know why and he felt like he had restless leg syndrome, she said it could be the percaset or it could be your body just getting better and wanting to move around more.  We think it was the medicine because remember the day before  he didn’t sleep although he tried and this day he wasn’t being himself.  So during one of our late afternoon walks he mentions he wants to go home he was dreading dinner and tired of the heparin shots every 4 hours to prevent blood clots, he said those were the worst ever, the changing of the IV from one hand to the other, he had just had enough I mean 9 days I was feeling it too but I just wanted to make sure he was alright before heading home.  So we go back to our room and page the nurse and inform her that he wants to go home and if she could page the doctor, she says it’s unlikely but we will see, we went again for another walk and he was more anxious at this point and getting irritable we see one of the doctor’s that comes and sees Ricardo every morning as well as Dr. Varma, Ricardo mentions how he wanted to go home and so he said that was fine and by luck he was discharged, we packed up and got ready and waited for our ride.  We arrived home around 10:30 p.m. and he laid in bed and called it a night after using the restroom of course.  The ride home was okay we stopped one time so Ricardo could use the restroom and right when we got home he was the first one out of the car to go to the restroom.  He was released with a prescription of Percaset and Ibuprofen and to take metamucil every morning, which that afternoon they had started him on the metamucil.  His night was okay at home he got up around 3 times in the middle of the night and up early in the morning to use the restroom, he came home with his JP drain also.  I got up early went to the pharmacy to get his prescriptions, some A & D ointment, Ensure, metamucil and gatorades.

 

He got the thumbs up from the Doc. to go home

He got the thumbs up from the Doc. to go home

 

The 5th floor staff took good care of us, we couldn't thank them enough!

The 5th floor staff took good care of us, we couldn' t thank them enough!

 

saying goodbye to our beds..

saying goodbye to our beds..

 

 

 

 

 

 

 

 

 

 

Ricardo said he couldn't wait to lay in his own bed.

Ricardo said he couldn' t wait to lay in his own bed.

so since we have been home things in the beginning were good, he was eating well and drinking lots of fluids and walking a lot. Wednesday thru Friday were fine, by Friday night he was having mild pain, he was taking 1 Ibuprofen every few hours to ease the pain and at first it worked then by Sunday it was hell, seriously, he didn’t sleep a whole  24 hours the pain had intensified to a 10 and the Ibuprofen was not doing anything for him at this point and so eating was a no and barely drinking and walking was hard but he did it.  We figured it was gas pains because remember his sister had her colon removed previous to his and the way he was describing his pain we knew it was gas, but we weren’t sure if it was what he was eating or what that was causing the gas, by 5 a.m. on Monday he had taken the percaset and that knocked him out which he needed because the night consisted of walking around throughout the house moaning and groaning and I would rub his back and he would walk and I would rub his back some more so the stronger pain meds did him some good to just knock him out and take the pain away but when he got up he needed to take more otherwise the pain was there.  We know the doctor’s had mentioned gas pains and that walking usually works but he didn’t expect it to be this bad.  I called Dr. Varma’s office Monday morning and we were told that the metamucil could have been the cause and to stop taking it and to change his diet to broths, rice and applesauce, things that would ease the stomach.  

 

walking is good for you and to ease pain also.

walking is good for you and to ease pain also.

 

Gas pains were getting the best of him!!

Gas pains were getting the best of him!!

 

 

 

 

 

 

 

 

By Wednesday the pain had subsided but with all these changes to his diet and still limiting himself on what to eat my husband has lost 30 pounds yes 30 pounds.  Ricardo hasn’t had any other complications, his sutures are looking good and he is going to the bathroom about 8 times during the day and 2 in the middle of the night, he has those nights where he is frustrated with going so much but we remind ourselves of what other situation we could be in and we knew what to expect.  So Ricardo just rolls it off his shoulders and moves on.  Remember Ricardo came home with his JP drain so now it has been a little over 2 weeks and we aren’t scheduled for our post op appointment until 4/24 so that is about 4 weeks post op.   So it is April 15th today as I am writing this and we were scheduled for Tuesday April 11th to go in and take out the drain by Dr. Varma’s nurse after my husband had mentioned to me that I should call her because he was a little worried about having it in so long.  I did call and the nurse did say that it shouldn’t be in so long and to come in on the 11th to remove it.  Well the next day after that phone call April 9th around 6 a.m. he couldn’t walk he was struggling with pain in his JP drain area so I told him to call the nurse and leave a message so she can call you back before seeing patients and he did, we laid back down and by 9 a.m. she had called back and asked that we come in asap to remove the drain to make sure it is not infected and so forth.  We got up, washed up, and headed out, yes, he drove, he wasn’t feeling the same pain he felt earlier that morning and he was somewhat excited to get the drain removed we made it there and she did say it was going to be painful and boy was it, Ricardo had turned pail and once getting his color back he sat up and we talked with the nurse about a few things, such as his weight, his diet, intimacy(that part woke up while still in the hospital which is a good sign being that the surgery is so close to those nerves there are chances of complications) anyway we finished talking about how he was feeling overall.  She weighed him and he gained 5 pounds, so that was good, really good.  The drain had leaked a lot at first but the nurse patched it up and it stopped hurting so we headed home.  Our ride home was bad, we hadn’t ate anything, he didn’t want to eat until we were home, close to a bathroom, and he didn’t want to stop on the road, and we hit traffic from San Francisco to Sacramento.  Half way through the traffic he started to feel pain, he took an Ibuprofen and within 45 minutes it had helped.  We finally made it home and he got comfortable in his “spot” and turned on the heating pad and laid it on his stomach to see if that would ease the pain.  His “spot” is the corner of the couch he has made it his home, he eats, sleeps, watches t.v., and has the heating pad plugged in right next to it.  The couch seems to be more comfortable for him to sleep other then the bed, that only lasted until the gas pains happened and since then he has slept on the couch reclining back because it hurts when he sleeps on his side.  Easter Sunday he actually had a good day, minimal pain and was able to go out to the park for a while and watch the kids find eggs and he ate a good dinner and dessert with no problems.  But the days previous to Sunday were again killer with pain Ricardo had started taking the percaset again and walking was just to painful.  We think what happened was he had the JP drain in so long that his scar tissue started to heal around the area and then when the nurse took it out, it ripped his insides (he says that is what it feels like) somewhat and caused the extreme pain, so we knew that it would get better that we just needed the area to heal from the inside out a little longer.  So today is Wednesday and he is doing well and the last couple of days since Easter Sunday have been good for him no problems… eating and going to the bathroom are good and he is up doing more.  We hope Ricardo’s health continues to recover as expected or even better then expected and that within a month or so he is doing twice as much as he is doing today, although he is still in the recovery process and a couple of set backs of pain, it was expected, and no complications with the pouch, infections, or sutures.  Thank God and all of our support we have had from family, friends, especially this blog.  We know a lot of people here on this site have UC and have gone through the surgery as my husband did, and finding people who have FAP is rare so that is why we wanted to share his story of not having any symptoms beforehand and not feeling so much relieved as most feel after having UC but he is relieved to know he prevented colon cancer.  Mark and Megan if it wasn’t for you mentioning what to bring to the hospital to help with the ongoing bowel movements we wouldn’t have been prepared, we brought extra soft toilet paper, wet wipes, etc. and it came in handy.  If it wasn’t for Jaime helping us with the gas pains blog we wouldn’t have thought to start that heating pad and we wouldn’t have thought to eat warm stuff to help soothe the stomach and once we tried it, it worked.  Ricardo is somewhat hard headed, I hate to say this but he is and so I would tell him but he wouldn’t believe me until I would show him the blog and then he would say okay and be willing to give it a try, I guess he wanted to hear it from a person who had experienced what he was going through.  So even this last time with the JP drain, I put out a question in regards to the drain and with the responses it just brought his spirits up to know he wasn’t in this alone and the only person who felt this after getting the drain removed.  Also we wouldn’t have even thought that it was a possibility that the tissue had healed around the incision until we read other blogs.  So kudos to this site, it is such a keeper and we can’t thank everyone enough for your support and help in getting through this time in our lives.

 

Easter Sunday 2009, father and son.

Easter Sunday 2009, father and son.

 

We were really happy to see him out and enjoying himself.

We were really happy to see him out and enjoying himself.

 

My daughter said this was one of her best days was her dad being there for Easter.

My daughter said this was one of her best days her dad being there for Easter.

 

 

 

 

 

 

 

 

We will keep everyone posted on his future recovery.  Ricardo and Christine Chavez

 

 

 

 

 

 

 

 

 

 

 

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