Office Visit 05/07/2013

I had a follow up (in between scopes) appointment with Dr Kandil today.  I have to admit that the drive to Greenville is LONG...2 hours each way for a 10 minute appointment, but Dr Kandil is amazing!  He is concerned about ME and how to treat ME.  I have NEVER had a gastro examine me so thoroughly...I have no idea what he's looking for or what he expects to find, but he checks my pulse points in my feet, my neck, etc; he feels for lumps under my skin (prone to cysts and bone tumors due to FAP/Gardner's); he listens to my stomach, heart, and lungs; pokes and prods my abdomen.  We talk about the uniqueness of having FAP and how doctors sometimes just don't know what to do with cases like mine because as 1st and 2nd generation survivors, we're creating a new frontier and changing what was previously known about FAP...all in the space of 10 minutes.

At the end of today's appointment, he decided that he was more concerned about the formation of adenomatous polyps in my j-pouch.  He said that the adenomatous polyps in my stomach are pretty much contained to a certain area that he's keeping track of to make sure that they don't spread from that area in a short period of time or that they grow in size too quickly.  He'd like to repeat the endoscopy in 3 or 4 months but really wants to re-scope my j-pouch.  Right now, it's scheduled for the first week of June...before the kids get out of school and before we do any traveling this summer.

There is still uncertainty as to whether or not I'll have my stomach removed sometime in the next year, but as long as the adenomatous polyps are contained, Dr Kandil is in support of waiting as long as possible to do it.  He's glad that the ball is rolling for me to be seen by the small bowel transplant surgeon at Duke...just to talk about my case and what's involved in having some small intestines added to my system for IF and WHEN it is needed in my future.  Thanks to FaceBook, I already know TWO ladies who have had it done...that is what does make technology amazing...all because of God who is awesome!

Thanks for your continued support and prayers.

Operation Save My Stomach--Scope #1

Today was the 1st in what I thought was going to be a series of monthly endoscopies (EGDs) over an unknown period of time to help me keep my stomach for as long as possible.  I had hoped to have a better idea of the time frame...like 6 or 12 or 18 months after today's procedure, but I do not.  What I do know is that the game plan has changed…again, & I’m fine with that.  Dr Kandil has spent a lot of time talking to others to get their input as well as doing additional research.  In the process, he has realized that while I do have a lot of polyps (both real and fake), all results so far have come back without any cause for suspicion, and the area of real polyps is small.  So, basically, the situation isn’t really as dire as he previously thought and doesn’t warrant doing something as drastic as scoping me each month.  Just going under anesthesia each month presents a challenge.  On top of that, “burning” areas of my stomach will only remove the polyps from the surface of my stomach, but it will not actually get the roots which means that traces of the adenoma will be left behind via the roots.  On the other hand, going in and removing a bunch of them for biopsy will remove the roots, but he won’t be able to cover as large of an area.  Another thing he learned is that while I do have some adenomatous polyps which do have a 100% chance of turning malignant in time, the time over which that happens is a lot longer than other areas of the GI tract like the colon & duodenum which are already removed in me.

So, I’ll go back in 6 weeks for a follow-up to see if he’s found anything new to try as well as to get the biopsy results.  Of course, he will call sooner than that if anything unexpected is found in the report.  Then, I’ll have another scope done 3 months from now with the plan to continue doing this for as long as possible.

Thanks to Linnea Ransom (my chauffeur) and Robin Cooper (potty break for Brownie), Thanks also to you for reading this blog and for your continued prayer and support as I continue to live my life on this journey of living with FAP.

Post Scope Follow-up with Gastro at ECU

Today, I took the very long drive from Camp LeJeune to Greenville for a follow-up appointment with my gastro, Dr Kandil.  I think I was the only patient he saw today…the office was totally empty.  The other 2 times I’d been there, the waiting room was filled with people, and there was all kind of activity going on in the exam area.  Today, it was a ghost town…except for the 2 receptionists and a couple of nurses walking the hallways.  As usual, he gave me a friendly “hello” and a hand shake.  Then, he got right down to business.  He reviewed what we knew going into the last set of scopes, what was discovered during the scopes, the pathology reports, and the options.  He reported that my Whipple procedure was done fabulously (there was no doubt about it since the #1 Whipple surgeon in the world, Dr John Cameron at Johns-Hopkins, did it) and that I actually have 2 different locations where my stomach empties (who knew?) and that these 2 locations meet up at the top of my small intestines.  This made a lot of sense because I’d seen a picture of a scope where it looked like there were 2 tunnels, and I was scratching my head trying to figure out what I was looking at and eventually just blew it off.  He also said that my j-pouch was gorgeous and that other than a few tubular adenomas (pre-cancerous polyps) that he needed to remove, it should last a long time.  He also said that outside of the GJ-junction (where my stomach is reconnected to my small intestines) and my j-pouch, he found NO other adenomatous polyps.  AND...he attributed the polyps at the GJ-junction to the stomach and not to the small intestines.  THAT IS GREAT NEWS!!  He also admitted that it’s rare to have a patient like me and that he’s at loss as to what to do because this is uncharted waters, and he doesn’t want to make a mistake because it’d be at the expense of my life.

So, these are basically the options available:

1.  Remove all of my stomach with a gastrectomy and hook my small intestines straight to my esophagus

2.    Remove a portion of my stomach…the section with the most adenomatous polyps

3.    Wait until things get worse and try to do surgery before a malignancy develops

4.    Commit to coming in once a month for an endoscopy in which he’ll take the time to start removing some of the polyps that are lining my stomach taking a section/area each month.  The method used would be similar to uterine ablation but instead of using hot liquid in a balloon, he’d burn a small section with hot gas.  The area would heal easily, and then, the next month, he’d do another section but also be able to check on the areas already done.

After thoroughly discussing these options and once again having him admit that he wasn’t sure which one to do because they each have pros and cons, he asked me what I thought.  I acknowledged that none of the options would be 100% perfect, but that I’d really like to keep my stomach as long as possible…especially because it would be nice to enjoy eating.  Since the current game plan involved scoping every 3 months to keep tabs on things until Matt got back, I figured we could use the time to see if his idea worked.  I know it’ll be a pain to go there every month…I’ll need a driver and someone to cover the kids and the dog, etc, etc, etc; however, it is certainly worth a try.  The worst thing that will happen is that I’ll have a gastrectomy once Matt gets back which is the current plan anyway.  So I don’t see much of a chance to lose anything by at least trying.  He said that when the polyps did grow back that hopefully there would be only a dozen or so at a time which is a small quantity to handle the removal of…even 100 wouldn’t be as bad as the wall-to-wall stuff I have now.  (I eventually hope to scan my photos and share with you the freakishness of my stomach.)

He’s going in front of another tumor board to get their input on our game plan, but I already have a date for my next endoscopy which is Tuesday, March 12 at 0930.  That should be perfect because I can get the kids on the bus before I have to leave.  My friend Alina has volunteered to take me each month, but I’m going to see if I can get a couple more friends who can do it so that there can be a rotation of driving every 3-4 months instead of monthly.

We also talked about small intestine transplant.  He said there’s no reason for me to have it done, but that he still wanted me to see the specialist so he was going to put in the referral.  I asked a bunch of questions and found out that if I did have a gastrectomy, there would be no concern for esophageal reflux and acid because acid production is done in the stomach so once it’s removed, then the acid goes away.  I also asked about stomach and colon transplants.  He said that you can actually get your stomach all the way through your small intestines transplanted…pancreas, gall bladder, etc…all included.  The stomach is removed right after the esophagus empties into it and the new one is attached in the same place.  Now, while that sounds like it’d be a great option, there are some serious drawbacks.  The first is that it is a transplant so the anti-rejection drugs would need to be taken for the rest of my life and all the precautions for avoiding infection would need to be a part of my life also.  On top of that, even though the donor wouldn’t have FAP, once the organs are transplanted into my body, the FAP mutation would take over the new organs, and they, too, would start to grow adenomatous polyps.  So, I’d be right back at square one which would result in eventually having organs removed again.  (Wouldn’t that be something crazy to say...that I had a Whipple procedure twice or tmy pyloric valve removed twice or my gall bladder, etc?  Yeah, once was enough...no thank you.)  I’m glad it’s an “option” but am not really interested in it.

He also wants me to talk to their nutritionist…she has a doctorate…in order to help me make sure I’m eating as healthily as possible.  That is something I’ve been wanting to do for a very long time…not sure when it’s going to happen, but I’m glad that it’s in the works.

So, that’s where things stand right now.  I guess he’ll give me the input from the tumor board when I go for my endoscopy in 2 weeks.

Thanks for the continued prayers…I truly appreciate them.

Love & hugs,

Steph<><

Tumor Board Results

This morning, I was getting ready to leave for a routine mammogram appointment in Porters Neck when the phone rang.  It was the oncologist/GI surgeon, Dr Vohra, calling because the tumor board had met and given their recommendation.  She was still waiting to talk with my gastroenterologist in NOVA, Dr Brown, to get his input, but the overwhelming recommendation was for me to have gastrectomy once Matt returns from his “vacation” in the Middle East.  So, now, what exactly is a gastrectomy?  A gastrectomy is the removal of either a portion or all of the stomach…in my case, the recommendation is to remove the entire stomach.  (I did ask Dr Vohra just to make sure we were on the same page…and we were.)  It was very touching to have MY doctor call and talk to me about this instead of having a nurse, an assistant, or a PA relay the info from her.  I was even more touched by her thoughtfulness because in her opinion, it’d be better for my whole family to have Matt back here when it happens…especially for the kids to have dad here with them while mom was recovering from surgery…or at least that he would be available to spend time with them if it was needed.  There was 1 caveat to this whole deal…I need to be scoped every THREE months until the surgery.  As long as everything stays the same and there are no unexpected surprises, the surgery will be delayed until sometime after Matt’s return.  I’m hoping to have it done at the beginning of the summer, 2014.

All of this brings up a bunch of questions like how are things going to go for me without a stomach? I know people can live without one, but I'm already living without so much of my digestive tract that I have no idea how this will impact everything else. AND since the GJ-anastamosis site has problems because the stomach tissue isn’t meant to handle digestive juices like the small bowel does.  This causes ulceration and inflammation and ultimately causes an increase in the malignancy rate for the GJ-anastamosis.  Well, I know from talking to Dr Vohra, that there are even more problems associated with hooking up the small bowel directly to the esophagus…just think of all the people who have reflux…this would be like that be amplified.  On top of that, I still need to see the small bowel transplant surgeon at Duke. This was just something my gastro wanted me to discuss "just in case", but with the upcoming gastrectomy, having additional small intestines would be a huge thing...especially since I have adenomas in my new duodenum AND in my pouch and could eventually be facing ANOTHER Whipple procedure and ANOTHER j-pouch surgery.  UGH!!  Isn't that "special"? I hadn't even thought of those two, but Dr Vohra pointed out that it's possible for me to have another Whipple if polyps grow in what is now my new duodenum. Can you imagine the nightmare that would create? I do not want to even think about it…or having a new j-pouch created. My Daddy asked if they can transplant some small intestines, why can't they do it for a stomach or a colon...now THAT would be VERY NICE!! Then we could keep a list of organs removed & replaced & be added to yet another category of rare people in this world.

Obviously,  this is all quite overwhelming…not just about having the surgery, but I am also overwhelmed by the God who created me and loves me and sent His Son to die for ME.  He has me right where He wants me…right where I need to be…in the right place…at just right time.  That is no accident; it is not a coincidence.  This is divine providence that is showing up in so many ways:

1.   I have specialists who know what to do with me and who are interested in what’s best for me.  Even though it is rare to have a patient with so many digestive organs removed (in part or in whole), I am not a total anomaly to them.  AND they have no problem admitting when they need to look into something or get additional input.  This is so much better than the guy I saw down in Wilmington…looking back, he was clearly overwhelmed and had no idea what to do with me.

2.  I have a very good friend who had a gastric sleeve done and has to follow a modified diet.  Now, she will be the 1^st to admit that her diet and situation are nothing in comparison to what I’m facing, but I disagree.  I think that if you have any type of deviation from the normal, then you can relate to someone else in a similar situation…maybe not entirely, but you can find the common ground and then exaggerate it to get to a better understanding of the extreme of another person’s situation.  This is definitely the case with my friend.  I admire her so much because she’s so good at planning her diet.  When she’s home, she sets the timer to go off every hour and alternates between eating something small and drinking to give her body what she needs.  When she goes out, her purse is packed with snacks like grapes, almonds, protein bars, etc.  I cannot even fathom being that organized but know that I will have to be.

3.  One of my neighbors and a very good friend is a chef…well, she says she was a chef before she became a full-time mom, but really, she’s a chef.  On top of that, she has a child with Prader-Willi Syndrome, a very rare but complicated genetic disorder.  Food is like a drug to her child who gets the same euphoric feeling that drug users do.  The brain always signals that it’s ALWAYS hungry even if the child just finished eating.  On top of that, her child’s body uses every single calorie consumed.  Since NOTHING goes unused, my friend makes nutrient dense foods to keep her child’s body as healthy as it can be and to control the tendency of PWS patients to become obese (think about it…it the brain is always sending signal that it’s starving AND it keeps every calorie consumed).  Anyway, this dear, sweet friend offered to help with my transition to eating with my stomach-less plumbing once the time comes.  She will take care of E-V-E-R-Y-T-H-I-N-G…from talking to a nutritionist (with me present), to planning meals (with me), to shopping for the food, prepping, etc.  I just need to sit down with her to learn what I need to know so I can eventually take over the responsibility for myself.  This is soooo amazing because she automatically took this on herself…she volunteered to do this without any asking on my part.  On top of that, I already KNOW how good she is at this because #1, she is a chef, and #2, she does this for her child.  She’ll take care of all the overwhelming stuff while I’m trying to recuperate, and then, she’ll teach me to do it myself. WHAT…A…BLESSING!

4.  I’ve gained some weight lately.  Most of it is from the naturally occurring changes in metabolism once a woman hits her 40s.  I even joked about this a couple of weeks ago…without knowing what was coming up. My diet hasn't really changed, but I've definitely gained enough “uncomfortable” weight that I’d like do something to tone things up (especially butt & thighs), but since I’m still dealing with whiplash from the accident, I can’t do much in the area of exercise.  Looking at my track record, it appears that every time I gain weight, something happens where I will benefit from the additional weight to have a larger buffer to keep me from dropping below 100 lbs. So as much as I don’t like this extra weight, I do think it's good because it’s more weight to prevent me from going below 100.

Well, I think that’s enough questions and information for anyone to digest right now…no pun intended.  I greatly covet your prayers as I continue this journey of living with FAP.

Consult with Oncologist/GI Surgeon

OK...this is the latest (detailed) update in the never ending saga of living with FAP:  I met with the oncologist/GI surgeon (Dr Vohra) at ECU & have to say that I...love...her!  She treated me like I was a human & not another “case”.  She even told the medical student that I probably knew more than she (the oncologist) did about FAP/Gardner's Syndrome.  She was amazed at my many GI (gastrointestinal) surgeries that I've had because it’s common for a doctor to see patients with just 1 of them but not 1 patient with all of them (subtotal colectomy with IRA, a resection, total removal with a j-pouch & temporary ileostomy & a Whipple)…I even got to show her my scar.  LOL

Anyway, Dr Vohra gave me the biopsy results from my scopes (upper & lower) 2wks ago which showed that while I had NO malignancies, I definitely have adenomatous (pre-cancerous) polyps in my stomach, in the upper portion of my small intestines (where my duodenum used to be), AND in the lower portion of my small intestines (where my colon used to be).  (So much for that other gastroenterologist in Wilmington with his very dismissive “that doesn't happen” attitude.)

I also got an education in how the GI tract was designed to work.  Since I lost my pyloric valve in the Whipple procedure, if food backs up in my small intestines, there’s nothing to prevent it from going back into my stomach or just staying in my stomach before emptying (Delayed Gastric Emptying or DGE).  She explained that while the stomach produces digestive juices, it’s not intended to have food in it on a long-term basis as the small intestines were designed to do.  This especially explains the continual problem I’m having with inflammation & ulceration at the anastamosis site which is where Dr Cameron connected my jejunum (portion of the small intestines after the duodenum which was removed during the Whipple) to my stomach (ie…gastro-jejunum anastamosis).  This continues to happen off & on regardless of the super-duper meds that I take to suppress gastric juices.  It’s also 1 of the reasons why there’s a high chance of malignancy at this site…things just aren't meant to come in contact with stomach tissue like that.

Then, we had a discussion about various options including close monitoring through scopes or surgery & of course, which type & when.  She said that determining a treatment plan for me would not be an easy decision to make because of the fine line between putting off surgery for as long as possible (because the cycle will just repeat itself) & getting it done before a malignancy develops.  Another possibility is just resectioning the anastamosis site because that would  delay the need to have a repeat Whipple…just like before when all of the stuff that plugs into the duodenum was disconnected from the duodenum & then reconnected to the jejunum except this time, it’d all be disconnected from the jejunum & the reconnected to the next part down.  It’d be just as serious & dangerous as the 1^st Whipple, & I definitely do not want to repeat that again.  Wow…who knew that I could be Whippled twice?  Not me & I hope that I don't have to, either!

She will call my gastro from NOVA (Dr Brown) as well as my current gastro at ECU (Dr Kandil) to get their input.  She will also present my case before the “Tumor Board” that meets every Friday morning in order to get additional input.  She said that she probably wouldn't present it this week because she wants a fair amount of time to present the case so that the facts don’t get rushed through & end up with a hasty decision. 

As of now, she is also inclined to recommend that I have an endoscopy every 3 months (sooner if additional issues arise) & a colonoscopy of my non-existing colon every 6 months.  She suggests that I have an outline tattooed around the “troubled” portion of my stomach so that it’s easily identified in follow up endoscopes.  Tattooing this area will also help to determine if the adenomas are spreading or if they’re staying isolated in that one area.   Have you ever heard the term “Never say, ‘Never’”?  Well, for those of you who know me well, I’m quite content to be tattoo-free & NEVER want to get one…that’s the need for me to rebel against what everyone’s doing just because “everyone’s” doing it…I’d much rather be an individual.  Well, I find hilarity in the idea that I just might be getting a tattoo after all…even if it’s on the inside where no one else can see.  It’s definitely a reminder that God is in control & that He has a sense of humor.  I will be placed in yet another rare group of those with an internal tattoo, AND I’ll be able to honestly say that I have a tattoo where the sun doesn't shine. ;-)

When it’s determined that surgery can be put off no longer, she suggests only removing the troublesome portion of my stomach & nothing else but also advises that I should be prepared for the worst just in case something happens during surgery which results in having all of my stomach removed which is always a possibility when performing any type of stomach surgery.

Finally, she agreed with Dr Kandil’s suggestion that I meet with a small bowel transplant surgeon in the Raleigh area because there is a very strong possibility that I will need this in the future to prevent short-gut syndrome.

First Round of Scope swith Dr Kandil

Yesterday, I had a double scope with my new gastro, Dr Hassam Kandil.  In the last 2 years, I’ve had a polyp grow at the base of my anus (not actually IN the pouch because the anus is still part of the colon), and I’ve had some real (instead of hyperplastic or fake) ones growing in my stomach.  Because of this, he wanted to go as far down into the small bowel with the EGD and as far up into the small intestines in the other direction with the colonoscopy to make sure no adenomatous polyps were growing in the small bowel.  I was not prepared for what he showed me after they were done.  Here’s what was found:

1.  It appears that the adenomatous (real…pre-cancerous) polyps in my stomach are growing and increasing in number.  They look very differently from the hyperplastic (fake) polyps that have been growing in my stomach for the past 18+ years.  Of course, we’ll have to wait for biopsy results to confirm the exact type of polyps these are.

2.  I also have what appear to be adenomatous (real) polyps at my GJ anastamosis (gastrojejunostomy...basically where my stomach and small intestines were reconnected during the Whipple procedure).  The adenomatous polyps are on the stomach side of the anastamosis (not on the small intestines side), and I’ve had issues with inflammation and ulceration at this location before.  Again, we’ll have to wait for biopsy results to get confirmation.

3.  He found several small polyps in my j-pouch which appear to be hyperplastic.  Once more, biopsy results will confirm if this is true.

4.  The good news is that no polyps were found in the rest of the small intestines that he was able to reach.

He wanted me to schedule a follow up appointment in 2 weeks to discuss the biopsy results.  Based on what he saw; however, he was going to put in a referral for me to see a surgeon about the possibility of having that portion of my stomach removed.  This morning, when I called to make my follow up appointment, I was told that he didn’t have an opening until the 27th of February.  His nurse said that he was fine with not seeing me until then because he’d already set up an appointment on the 11th with an Oncologist/GI surgeon to talk about the next step.  His nurse also said that if any of the biopsy results were to come back with unexpected info, I would definitely get a call from him before then.  Either way, all of the records will be in the system for the surgeon to see.

SIGH…often times, living with FAP seems to be a never-ending, uphill battle...like always getting the short end of the stick.  It is rarely a dull moment.

BTW...MEGA THANKS to my fellow Warrior Wives, Alina, Jodi and Megan for taking me (Alina), keeping my kids overnight (Jodi) & letting the dog out (Megan).  I appreciate it so much!

Second Opinion with a NEW Gastro at ECU

Today, I took the trip to Greenville to meet another gastroenterologist.  His name is Dr Hossam Kandil.  He's from Egypt and has the lightest blue eyes I've ever seen.  They are just gorgeous and in such stark contrast to his olive-complected skin.  Anyway, I met him and think he will be a great doctor for me.  He knows a lot about FAP but conceded that I probably knew more than he did.  He listened to my medical history and my concerns.  He did a physical exam which I think was probably the most in depth one any gastro has ever done on me...even Dr Hoang (UNTHSC in TX) and Dr Brown (QVA).  Of course, any type of exam would have been more than the doctor in Wilmington who didn't even poke me or listen to my heart beat.

Dr Kandil wants to repeat both scopes...he's not willing to go off of the previous gastro's scope in October.  I have an appointment scheduled for next week and will need to make arrangements for the kiddos and dog...and of course, a chauffeur for me.

He also recommended that I see a small bowel transplant surgeon just because that is something that may be necessary in my future, and he'd like me to be as informed as possible for whenever the need arises...proactive planning instead of reacting to the situation.

He also knows the kids' pediatric gastro and the colon-rectal surgeon so that will be a good arrangement for them to share info regarding our cases with one another.

I am really excited about this now...reminds me of Quantico when I had the first gastro for a few months and wasn't impressed with him before switching over to Dr Brown.  I am thankful for this new option and will not mind the drive since it ensures that I have great care.