My ostomy story - new member

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MrMatt
Posts: 15
Joined: 2019-02-11 10:35:42

My ostomy story - new member

Post by MrMatt »

Hi, I'm new here. Been meaning for some years to post on this board.

So, my (kinda long) ostomy story is as follows. I hope it is found to be informative, supportive, kinda humorous:

-1992, diagnosed with FAP (Gardner Syndrome variant – includes bony growths on skull (osteomas), freckles in retina, extra teeth). ‘Thousands’ of pre-cancerous polyps ‘carpeting’ my colon. I was almost 37, most patients do not survive to their mid-thirties(!) Not many symptoms like pain, bloating etc., just blood in stool (that I ignored for some time...my bad!) No other incidence in family members, so technicaly was not ‘familial’, but ‘de novo’, they say. I interviewed 7 surgeons, with 3 pages of written questions. Every one had to have a look-see, with colleagues even! I was a rare case, still alive from this at my age...

I went back and chose the first surgeon I met with; he had sat with me after hours one night for 2 hours, talking. Great guy. Great bedside manner as a result. Others didn’t seem to want to spend the time, brushed off my questions and concerns. (An aside: My surgeon ended up changing careers years later, to become a pastry chef!)

Had a total colectomy, temporary ostomy, and J-pouch. A ¾” cuff of rectum was left, for connecting J-pouch to for normal bathroon use. Post-surgical testing showed that colon polyps did not, yet, penetrate the intestinal lining – no spread, thankfully! Started on Celebrex, 200 mg twice a day, to slow new polyp growth in rectum and duodenum.

-1990’s, had numerous surgeries for adhesions (scar tissue) and/or resections. (Each of course caused more adhesions...) Each resection surgery removed a *bit* more of the end of my small intestine, inches at a time. Lots of trouble with adhesion-related partial/full blockages, pain, a blind loop(!), ER visits, NG tubes (yuck!), fear and trepidation. (I remember watching the O.J. Simpson ‘white Bronco’ slow-speed chase from my hosptial bed, in a post-surgical, drooling, opiod fog...Ahh, the old days of pain med delivery – before metering pumps) But luckily, never had pouchitis. Diet limited fibrous foods: steak (except filet mignon), mushrooms, lobster, raw veggies, nuts, coconut, dried foods, seeds, Chinese food, popcorn, potato/apple skins and the like. Got to loving V-8 juice – lots of salt, vegetables, liquid; still drink at least 5 a week, every week.

-Started on vitamin B-12, sublingually, and high-dose (10k) oral vitamin D-3, to replace that not absorbed by my missing colon and small bowel. Drank alot of fluids (and beer), and added salt to food, to replace what was not absorbed by missing colon. I undestand that part of the small bowel over time does change to absorb some water and salts, but not alot. Dehydration is a concern.

-(Kind of) funny story: Had a bout with iron deficiency in ~2001, where my skin was pale, had a lack of energy. Testing did not show where blood loss was (not enough to see in my stool), but resection surgery found a stricture in my bowel. My intestine was stretching above the stricture as food backed up, leaking blood. I got immediate results: normal skin glow, energy back, no blockage. My co-workers though I had gone to the beach on a vacation, as I had a ‘tan’, not belly surgery!

-Had both upper (EGD) and lower scopes at least twice a year for over 25 years, to check/remove/biopsy polyps from duodenum and rectal cuff. This rigorous treatment schedule saved my life. Had an ERCP ~1995 to check the papilla (connection of pancreas/gall bladder/liver ducts to duodenum), to monitor a polyp there. I like to say that I put my scope doc’s kids through college<GG>.

-FAP – Gardiners specifically, requires thyroid surveillance due to cancer risk, and of course scopes for family members on your side, especially teenagers. Check for desmoid (soft) and osteoma (bony) growths on the body, and get regular eye doctor visits. Genetic testing is also very important.

-As an aside, in 2009, I had acute pancreatitis, caused by a gallstone clogging the panreatic duct to my intestine. So, the pancreas started digesting itself(!), since the digestive juices were stopped from flowing into the intestine. VERY, VERY painful, worst pain a man can have. ICU for 2 weeks. Parenteral (intravenous) nutrition for 4 more weeks. Nothing by mouth at all for that time! Then weeks of no fat foods – very tasteless and so boring! All to let the pancreas heal.

My body then developed a pseudocyst around the pancreas to protect it(?) while it tried to heal. I was set for surgery to drain the cyst, via a scope, into my stomach(?!). But, after I was out, scope doc found that the cyst had drained itself somehow, maybe the day before. No need to drain it! I was left with a pretty ‘beat-up’, atrophied pancreas, still working OK.

-2014, even with all the surveillance, the polyps in rectal cuff could not be adequately removed. I was told I needed an ileostomy. We were freaked out at the news, even after all the other belly surgeries; we had a bunch of drinks that night... My wife and I so very much had dreaded this day, even knowing for decades this was going to happen *some* time... So, I had the rectum, anus and a(nother) small piece of intestine removed, and a permanent ileostomy.

After recovery and getting used to the ostomy pouch system and regimen, I discovered that it was not anywhere as horrible as I/we thought it would be! I had no more blockages (yay!), no more pain, no more ER visits, no limit to foods, no leaking at night, no restrictions. None; except no strenuous ab workouts. Went to the gym, went swimming, hot tub even(!), vacations, etc.

I use a 2-part Hollister bag and flange, a ring sealer underneath, and a liquid and powder treatment pairing to coat and protect my skin. That system works very well for me. A great discovery, that eases my mind alot, is a Sure-Seal clear cover over my flange. I am very fortunate to have a flat belly, so I can go ~12 days between changes, while switching out the bag alone every 4 days.

I was started on lomotil and loperamide 4x a day to slow my bowels to aid absorption. This helped reduce bag emptying to 6-8 times a day.
-2017, next adventure, was the need to get a Whipple procedure to remove my duodenum and the problematic ampulla polyp there that could no longer be periodically addressed via scope. This required removal of ½ my pancreas and ½ my stomach due to where the duodeum sits. This is usually a surgery for pancreatic cancer, and is a very, very big procedure. But it is probably more appropriate to describe it further on a weblog for Whipple patients; that’s next. Unless someone is intereted here...

I would add that it is best to seek to become your own advocate for care, given the fracturing of medical specialties into sub-specialties – surgeons don’t treat vitamin deficiencies, endocrinologists don’t monitor exercise, etc. WOCN nurse is paramount. Combine different professionals to treat different parts of your situation. Copy everyone on treatments, meds. I use my PCP as a cleqaringhouse; he gets all reports. Learn about anatomy, medication side effects, different treatment/surgery options, case histories, etc. Knowledge is power!

But always questioning, doing (careful!) internet research (respectable hospital sites only, like Sloan Kettering, Johns Hopkins, Cleveland Clinic, UPenn (where my surgeries were done), Mayo Clinic). Look at alternate treatments, but research them well! I now take curcumin (turmeric) w/piperin instead of Celebrex, due to ulcer. Works great for me, but doesn’t for everyone. Get a second and third opinion before deciding on any treatment/surgery.

Thanks for reading my story. I am open to replying to the questions you have. I hope that I have provided some clarity to what can happen (and why it does), what to expect, some advice and recommendations. You can survive these challenges! There are excellent doctors out there. No need to suffer and wait.
MrMatt
1992 FAP, colectomy, J-pouch
2009 acute pancreatitis
2014 ileostomy
2017 Whipple
nickolas
Posts: 119
Joined: 2018-11-13 12:13:13

Re: My ostomy story - new member

Post by nickolas »

Hi and welcome, WOW that is quite a history, including Whipple surgery. That is pretty major from what I understand. Interesting that you can wear a wafer for 12 days. I will be honest, I generally go 1 week, have not tried it beyond that. And i agree, there are some excellent Dr.(s) and surgeons out there. I truly feel I am alive due to some of these great people.

Anyway welcome, glad to decided to join up.

nickolas
rectal cancer 2004
stage IIIC
permanent colostomy
NED 15yrs and counting
BillV
Posts: 120
Joined: 2013-11-11 21:24:03

Re: My ostomy story - new member

Post by BillV »

Your very informative story about what you’ve gone thru with FAP is similar to mine, but much more complicated. I was very fortunate to be referred to a surgeon with experience in removing polyps on the ampula with a scope and have made sure that my GI scopes that area annually for possible recurrence. I also received the same surgical recommendation that you did when I had recurrent high grade dysplasia and a malignant polyp in the rectal cuff. Since I strongly did not want an ileostomy, I researched my options on the internet and was fortunate to locate a surgeon who gave me a BCIR (similar to a K pouch) that does not require having an external bag. The procedure has allowed me to have a very good quality of life, as it has for most with these procedures. After having this surgery, I joined the Quality Life Association (www.qla-ostomy.org) and gave a presentation about using the internet for medical research. The current issue of UOAA’s magazine “Phoenix” contains my article entitled, “Researching Your Options”. While a BCIR or K pouch is not always the best option, it is assuring to know that they are available. Thank you for sharing your story with us and I am glad that things have worked out satisfactorily for you.
Bill
Button
Posts: 3616
Joined: 2017-10-10 22:14:15

Re: My ostomy story - new member

Post by Button »

MrMatt:
Welcome to the group.

Wow. You have been through an exhaustive health odyssey. I am always amazed by the life stories behind each person’s face.

Your insights and contributions on the board will be appreciated. We all learn from each other.
Karen
Intestine perforation, sepsis, ileostomy, 2012
Addison’s disease + endocrine failure
Palliative Care
MrMatt
Posts: 15
Joined: 2019-02-11 10:35:42

Re: My ostomy story - new member

Post by MrMatt »

nickolas wrote: 2019-02-11 18:43:17 Hi and welcome, WOW that is quite a history, including Whipple surgery. That is pretty major from what I understand. Interesting that you can wear a wafer for 12 days. I will be honest, I generally go 1 week, have not tried it beyond that. And i agree, there are some excellent Dr.(s) and surgeons out there. I truly feel I am alive due to some of these great people.

Anyway welcome, glad to decided to join up.

nickolas
nickolas,

I'm glad to (finally) provide my crazy history, if only to help others who may be going thru similar/worse situations themselves.

I'm new to blogging, etc., am not on social media otherwise, so I may return here only sporadically. But I have another post in mind, related to foods, meds, ostomy products, etc. that I have found to work for me.

I realized a few years in, that I didn't have to replace the whole pouch system as often as I was, just snap on a new bag. What a discovery!
MrMatt
1992 FAP, colectomy, J-pouch
2009 acute pancreatitis
2014 ileostomy
2017 Whipple
MrMatt
Posts: 15
Joined: 2019-02-11 10:35:42

Re: My ostomy story - new member

Post by MrMatt »

BillV wrote: 2019-02-11 19:37:37 Your very informative story about what you’ve gone thru with FAP is similar to mine, but much more complicated. I was very fortunate to be referred to a surgeon with experience in removing polyps on the ampula with a scope and have made sure that my GI scopes that area annually for possible recurrence. I also received the same surgical recommendation that you did when I had recurrent high grade dysplasia and a malignant polyp in the rectal cuff. Since I strongly did not want an ileostomy, I researched my options on the internet and was fortunate to locate a surgeon who gave me a BCIR (similar to a K pouch) that does not require having an external bag. The procedure has allowed me to have a very good quality of life, as it has for most with these procedures. After having this surgery, I joined the Quality Life Association (www.qla-ostomy.org) and gave a presentation about using the internet for medical research. The current issue of UOAA’s magazine “Phoenix” contains my article entitled, “Researching Your Options”. While a BCIR or K pouch is not always the best option, it is assuring to know that they are available. Thank you for sharing your story with us and I am glad that things have worked out satisfactorily for you.
Bill
Bill,

Ah, 'high grade dysplasia', my favorite term! *not*! My ampulla polyp became too flat to raise with saline and snip off, so that resulted in the Whipple. Duodenum and pancreas are wed together; very similar tissues, hard to separate/distinguish. So sez my surgeon. I also had a polyp near the outlet from my stomach. Hence partial removal as well.

I guess after my J-pouch and all the surgeries related to adhesions, a BCIR was not advisable, due to remaining length of small bowel(?), or somesuch(?) I'm still kicking myself all these years later that I avoided an ileostomy for so long! It is such a major relief from all the jazz I went through.

I get the Phoenix; will look for your article. (My pdf copy had a bunch of blank pages; I have asked for a new copy). As you may understand, I as well have done *alot* of internet research! Too much time on my hands!

You're welcome; glad to share my story. Good luck to you.
MrMatt
1992 FAP, colectomy, J-pouch
2009 acute pancreatitis
2014 ileostomy
2017 Whipple
MrMatt
Posts: 15
Joined: 2019-02-11 10:35:42

Re: My ostomy story - new member

Post by MrMatt »

Button wrote: 2019-02-12 08:50:08 MrMatt:
Welcome to the group.

Wow. You have been through an exhaustive health odyssey. I am always amazed by the life stories behind each person’s face.

Your insights and contributions on the board will be appreciated. We all learn from each other.
Karen
Karen,

Thanks. Just happy to help others here. My odyssey has made me stronger, more appreciative of life, friends, spouse. My brothers call me "Matt v.10.0", for all the stuff I've been through. (I have had other medical events as well; broken bones, etc.)

I'm not complacent or insensitive to the realities I/we all here face or ar facing, just the supreme realist; what was my second option again, instead of surgery? Hmmm, don't care for *that* option... sooo, let's do surgery. What do I need to do, what can I expect?

Good luck to you.
MrMatt
1992 FAP, colectomy, J-pouch
2009 acute pancreatitis
2014 ileostomy
2017 Whipple
Jrt1352
Posts: 10
Joined: 2021-07-21 16:30:05

Re: My ostomy story - new member

Post by Jrt1352 »

Hello MrMatt, I thought I was the only person on earth that has had a colectomy/j pouch and then a whipple surgery. If you still monitor this would it be possible to private message you via text or email. I have so many questions for you as I am trying to decide whether to have my j pouch removed and go to a permanent ostomy. I had the j pouch surgery in 2016 due to ulcerative colitis. I’ve had problems with it since day one. Namely pouchitis, urgency, cuffitis. I’ve been on flagyl/cipro pretty much full time since the take down in 2016. In November of 2020 I was diagnosed with stage 1 duodenal cancer that required a whipple surgery. I can’t catch a break. I’m 48 with an active family and two teenage sons. I just want to make sure that I am making an informed decision about the pouch removal. I’d appreciate any advice that you can give me. Thanks.
MrMatt
Posts: 15
Joined: 2019-02-11 10:35:42

Re: My ostomy story - new member

Post by MrMatt »

Hi Jrt1352,
Newly registered, then took only 15 minutes to find my old post! wow!
Your conditions are similar to mine, but so sorry to hear that you are going through so very much more than I did/do! We are both quite rare. My surgeries were to chase pre-cancerous polyps - familial polyposis (FAP), Gardiner's Syndrome.
I was fortunate to have a J-pouch for 25 years without pouchitis or antibiotics. My only complaints were leakage, esp. at night, and scar tissue/adhesions from the colectomy and later surgeries for 'lysis' of same. I had the pouch removed when I required my rectum/anus to be removed due to no longer treatable polyps. All my scar tissue issues went away! (So far, 8 years later.)
Do not fear an ileostomy. I did, but realized quickly that it was the solution I needed. Maybe it is for you - years on antibiotics wrecks your intestines, causes diarrhea, generally not the way to live. Nobody will really notice it - who looks at our shoes, say? Wear stripes or patterns to hide it. (I don't know if you are a guy or a gal.)
I had Whipple for polyps in the duodenum. Sure changed my diet, burping, gas in the bag! But I've adjusted. You will too; give it some time. None of this stops me from doing things.I eat anything now; had some limits before with scar tissue.
You actually CAUGHT a break, getting a solution to UC, then a solution to duodenal cancer. Kind of drastic, but you're alive now! (A friend of mine died last year, 3 scant months after being diagnosed with bile duct cancer; quite close to where you and I had duodenal issues.)
Please send more questions - I'm glad to answer them.
MrMatt
1992 FAP, colectomy, J-pouch
2009 acute pancreatitis
2014 ileostomy
2017 Whipple
Jrt1352
Posts: 10
Joined: 2021-07-21 16:30:05

Re: My ostomy story - new member

Post by Jrt1352 »

Thank you so much. I’d really like to speak with you about some questions that I have. Would you be opposed to a phone conversation? No worries if you are not interested. I just thought it might be easier than typing on the post. Thanks. If interested direct message me. If you want to send me your email address I can give you my cell number.
Last edited by ot dave on 2021-07-22 11:29:26, edited 1 time in total.
Reason: User posted a personal e-mail. To prevent spam to the poster, the e-mail was removed.
MrMatt
Posts: 15
Joined: 2019-02-11 10:35:42

Re: My ostomy story - new member

Post by MrMatt »

Hi,
I'd rather converse here. What is your name? (You can probably guess mine <GG>) I am in NJ, almost 66 years old; where are you?
Bring on your questions! I'm all ears, ready to (try my best to) help.
Take care,
MrMatt
1992 FAP, colectomy, J-pouch
2009 acute pancreatitis
2014 ileostomy
2017 Whipple
User avatar
To Dream a Dream
Posts: 1414
Joined: 2010-08-10 18:35:53

Re: My ostomy story - new member

Post by To Dream a Dream »

Glad to see your posts. It's so nice to know that members we have not heard from for awhile are still out there with all that is occurring in our world today. Happy to find another SureSeal aficionado. A little tricky to use at first, but well worth the time it takes to learn.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
MrMatt
Posts: 15
Joined: 2019-02-11 10:35:42

Re: My ostomy story - new member

Post by MrMatt »

I'm so glad to help anyone!
Nice that a new member quickly found my old post.
I'm still out here! Facing a prostate issue that is complicated by my surgeries...
Would it be worth re-posting my old comment to make it more available? (I don't know how social media stuff works, not being in any sites...)
MrMatt
1992 FAP, colectomy, J-pouch
2009 acute pancreatitis
2014 ileostomy
2017 Whipple
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