My ostomy story - new member
Posted: 2019-02-11 10:48:44
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.
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.