I've never joined the Crohn's Forum before because I felt like I didn't belong and certainly had nothing to feel sorry for myself, compared to the things that other members have gone through. A little history...
I've had pretty severe stomach aches since a teenager in the late 1960s (yeah, that old!), but kept it to myself until several years later, married, teaching, with 2 little ones and doubling over everytime I put a speck of food in my mouth with constant diarrhea.
Had the standard tests then, upper GI, lower GI, etc. during a 5-day stay at a hospital, and they settled on "spasmodic colitis" or "irritable bowel syndrome". I found Imodium and was able to control the diarrhea enough to continue teaching, have another child and raise my young family. Life was good. Things were humming along.
1993 and it hits the fan! Ridiculous pain in gut, diarrhea, losing weight like crazy, could not eat, divorced and with 3 growing kids to raise and support. New GI guy with tests diagnosed Crohn's, much easier because now I had this 10" stricture near the ileocecal valve. Found out that sulfasalazine seemed to be the one med that wouldn't exacerbate the diarrhea so have been taking it since. 3-4 months later and back on top. Very important find...NO DAIRY or PEANUTS and I didn't have to take meds for diarrhea. Yeah! (Although I wouldn't think of going anywhere without chewable Pepto!)
20 years go by in remission. Children grow up, teaching career winds down, remarry, life is good. Then last July and gut crunching episode that lasts 3-4 days with me in a ball on the couch. A month later, a repeat on a vacation.. The only connection between the two was eating a nut butter sandwich (no peanuts - soy butter one time, sunflower butter the next). I meet with a GI doc, schedule another colonscopy (kept those up and yearly GI appointments throughout the years). Super busy me, shakes it off, flies to Indy to spend time with grandkids in September, and a week later all hell breaks loose. The worse pain ever, can't move, walk, talk (for about 24 hours), use the restroom, eat, drink, awful! Eventually had (grotesque alert!), explosive diarrhea, and after a month of cold sores and horrendous boils (and the colonscopy), started getting back to normal. Only one more issue about a month later with an almond butter snack. (Slow learner??)
Was getting no answers from GI doc that took the place of my retired original one, so found a new one in the big group devoted to digestive diseases in a city nearby. Smart move. The episodes were bowel obstructions apparently with the last one very severe. The only problem I had was that neither of these was the least interested in considering a dietary link between dairy, peanuts and nut butters and Crohns. Makes me crazy as I believe completely that the last 20 healthy years was due to carefully avoiding the first two.
MRE and blood tests later and GI doc and surgeon both agree it's time for an ileocecectomy to remove the stricture (about the same size), ileocecal valve and appendix.
It's mid January, postsurgery, and it's been rocky for sure. Still a long way to go, but hoping it's only up from here. Surgery was tougher than I thought with a return to the hospital due to a pretty severe post op abdominal infection. In the hospital 9 of the lat 13 days. But hey, as of yesterday I'm back home and that's a really good thing! :hug:
I've had pretty severe stomach aches since a teenager in the late 1960s (yeah, that old!), but kept it to myself until several years later, married, teaching, with 2 little ones and doubling over everytime I put a speck of food in my mouth with constant diarrhea.
Had the standard tests then, upper GI, lower GI, etc. during a 5-day stay at a hospital, and they settled on "spasmodic colitis" or "irritable bowel syndrome". I found Imodium and was able to control the diarrhea enough to continue teaching, have another child and raise my young family. Life was good. Things were humming along.
1993 and it hits the fan! Ridiculous pain in gut, diarrhea, losing weight like crazy, could not eat, divorced and with 3 growing kids to raise and support. New GI guy with tests diagnosed Crohn's, much easier because now I had this 10" stricture near the ileocecal valve. Found out that sulfasalazine seemed to be the one med that wouldn't exacerbate the diarrhea so have been taking it since. 3-4 months later and back on top. Very important find...NO DAIRY or PEANUTS and I didn't have to take meds for diarrhea. Yeah! (Although I wouldn't think of going anywhere without chewable Pepto!)
20 years go by in remission. Children grow up, teaching career winds down, remarry, life is good. Then last July and gut crunching episode that lasts 3-4 days with me in a ball on the couch. A month later, a repeat on a vacation.. The only connection between the two was eating a nut butter sandwich (no peanuts - soy butter one time, sunflower butter the next). I meet with a GI doc, schedule another colonscopy (kept those up and yearly GI appointments throughout the years). Super busy me, shakes it off, flies to Indy to spend time with grandkids in September, and a week later all hell breaks loose. The worse pain ever, can't move, walk, talk (for about 24 hours), use the restroom, eat, drink, awful! Eventually had (grotesque alert!), explosive diarrhea, and after a month of cold sores and horrendous boils (and the colonscopy), started getting back to normal. Only one more issue about a month later with an almond butter snack. (Slow learner??)
Was getting no answers from GI doc that took the place of my retired original one, so found a new one in the big group devoted to digestive diseases in a city nearby. Smart move. The episodes were bowel obstructions apparently with the last one very severe. The only problem I had was that neither of these was the least interested in considering a dietary link between dairy, peanuts and nut butters and Crohns. Makes me crazy as I believe completely that the last 20 healthy years was due to carefully avoiding the first two.
MRE and blood tests later and GI doc and surgeon both agree it's time for an ileocecectomy to remove the stricture (about the same size), ileocecal valve and appendix.
It's mid January, postsurgery, and it's been rocky for sure. Still a long way to go, but hoping it's only up from here. Surgery was tougher than I thought with a return to the hospital due to a pretty severe post op abdominal infection. In the hospital 9 of the lat 13 days. But hey, as of yesterday I'm back home and that's a really good thing! :hug:
