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After decades of Crohns, paying the piper...

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:
 
generally speaking the older you get, the longer it's going to take to heal from surgeries and the risk of infection will increase. take extra measures to heal with rest and good nutrition.
 
Hello and Welcome,

Quite a ride you had there... but hey - you have managed all those years without any meds (5asa are no longer thought of as a treatment for Crohns), no surgeries, sounds like pretty normal life with a family and a career...

I wish you a quick recovery and that years to come will be even better than the ones that you had.

By the way, the episodes that you described are really very consistent with a severe stricture, and hopefully now that it is removed you are going to feel much better.
My guess is that it's not the butter - but the stricture - but hey, you know yourself the best ! If you feel that it is not making any good, avoid it ! There
are plenty of other tasety choices out there.

Out of curiosity, is your GI going to put you on some maintenance meds once you recover ?

Feel Well.
 
The doc who ordered the surgery wants to put me on some maintenance med of some sort, but I don't remember the name. He kept me on the sulfasalazine for the time being. I was supposed to get a special blood test with a Prometheus kit sent away, but I'm nervous about getting on one of the heavier drugs. It seems that if I managed so long without them and controlling diet, why take the chance with so many side effects. But then, you're talking to someone who's dealing with a ridiculously itchy rash I've picked up since surgery and nonstop diarrhea, likely from ??? and the many series of iv antibiotics I've been on. I have a few more appointments in the coming weeks and will listen to the experts however. Right now, I just want to be able to move at more than .5 mile an hour, and have the energy to do something. I'm not used to sitting around when there's so much around me that needs doing. But with a packed draining bandage on my belly from the infection, it's just difficult to move much. I think only folks who have been through this experience could read this without being totally grossed out.
 

David

Co-Founder
Location
Naples, Florida
Welcome to the community :)

I suspect that your doctor wants to put you on Imuran/azathioprine/6mp which is indeed a pretty good maintenance medication.

I understand your desire to avoid them, but at this point, you've advanced to stricturing disease. As you've already had a reasonable amount of small intestine removed, I assure you that you do not want more to be removed.

With part of your terminal ileum removed, you're going to want to get your vitamin B12 level tested immediately to determine a baseline then every 6-12 months depending on your doctor. In addition, I would discuss supplementing magnesium with them.

We're here for you.
 
Question... Immediately after surgery they gave me 4 bags of I've potassium because it was so low. When I went back with ab infection, they gave me more orally as it was low again but then came up. I told doc I had been having extremely sore lft upper arm pain for about a month before surgery which he said could be a symptom of potassium defiency which is not uncommon with Crohns. Have you heard anything about this?
 

David

Co-Founder
Location
Naples, Florida
I haven't heard of the arm pain but as I mentioned, you may want to look into magnesium as a magnesium deficiency can be the underlying cause of potassium deficiency.
 
Good point, David. I need to pick up some supplements when I finally can get out of the house, so magnesium and potassium will be on the list. Thanks.
 

David

Co-Founder
Location
Naples, Florida
Please just avoid magnesium oxide. It is not well-absorbed and is of course the most common (and cheapest) form you'll find in stores. Magnesium citrate or magnesium glycinate are my personal favorites. As always, let your doctor in on all of this.
 
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