Crohn's surgery
Had surgery on the eighth. They removed 24" of small intestine and a golf ball sized mass. Home now in recuperation mode.
Aw shoot Pete, I hope you get to feeling better soon!
They hook you back together or do you have an ostomy?
My ex-boss went the other route, had a J-Pouch procedure, which just seems overly complicated.
Crap, Z, I'm sorry it got that bad. I hope at least this will offer you some relief, now that it's out. :(
At least they didn't let you linger in pain. Now you'll feel better soon as you are healed!
Best wishes Pete!
Feel better soon Pete. I imagine the did a primary reanastmosis and put all the bits back together again? Get well soon!
I hope you feel better soon, Pete.
I'm hoping for a speedy recovery for you, pete. I should have said that before, but I am sometimes socially awkward
I hope you're feeling better soon, and I hope you take all the time you need to heal.
Here's a pic I took for you a little while ago.
Goddang, dude. Get to feeling better soon. Sounds rough.
My mom had to have a similar thing done for large polyps (colon cancer runs in the family) I remember the recovery was not fun. Hope you get better soon Pete, my sympathies go out to you.
Still very weak. But every day's a litlle bit better.
Plumbing still works the same just a shorter pipe. Interesting bit of trivia: the piece they took out (the last two feet of the small intestine) is the only part that can absorb B12. I'll be getting B12 shots to compensate.
I hope it all comes out ok for you Pete.
Hope you're feeling up to par really soon, Pete. :)
yow! wishing you a speedy recovery. If they took out the bit that absorbs B12, is there a chance that B12 is related to your problems?
Interesting bit of trivia: the piece they took out (the last two feet of the small intestine) is the only part that can absorb B12. I'll be getting B12 shots to compensate.
Yeah, those suck, huh? FWIW, I can send you a link to a B12 skin cream you can take instead, if you get tired of the shots. Transdermal meds are just as effective--like the nicotine patch, and the birth control patch, that kind of stuff. (Plus, I know it works because Minifob loses his marbles when he's off the B12, and when we switched from shots to the cream it was a completely smooth transition... and now if we stop the cream he reacts the same way as he used to when he missed a shot.) It's a measured pump dose, so you can figure out how much you need in order to match the dose you're currently taking in the shots.
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I wimped out.
As I mentioned above, I will now need B12 shots on a regular basis. In fact, the gastro wants to jump start me by having me take B12 for seven days in a row.
Now I am reasonably stoic getting shots, but only because I don't look. Closing your eyes is not the best option when you're giving yourself a shot.
So I've been psyching myself up for sticking myself in the leg.
Until yesterday, when I found out the local pharmacy will do all seven shots for $20.
Stress over. I can go back to not looking.
That's worth it.
I'd like to think I would do well giving myself a shot, but since I've never tried to do it, I have no idea. I don't have any trouble when they stick those huge needles in me when I give blood. And I often watch. But doing it to yourself is a different story.
I took a few of the kids' shots, because I feel like it's important for me to understand what I'm putting them through. Doing it myself didn't bother me, but honestly, the pain was worse than the big blood-draw needles, because for some reason with the B12 it keeps stinging for awhile after the needle's out. A different kind of pain, if that makes sense.
Pete, ask your doctor about using a transdermal cream. I guarantee you there's a compounding pharmacy in your city (back in the day all pharmacies were compounding pharmacies, before mass production made them nothing but pill-counters.) Some Walgreens and Target pharmacies have even started offering compounding services, because of the ever-increasing need for people to have their meds prepared with no gluten or other additives. Almost any med can be put into a transdermal cream, the doctor just has to write the prescription that way. They'll give it to you in a collection of metered, capped syringes, so you can measure out exactly 1 mL of the cream or whatever concentration you're supposed to take.
Pete, I just saw this thread. I'm sorry you had to have surgery. I have Crohn's. I was diagnosed in 2004 after becoming very ill and losing over 50lbs. My twin brother has had it for much longer than I have (I think he was diagnosed in our late teens...we're 41 now). He has had 3 bowel resections along with numerous other surgeries for complications.
I get monthly B-12 injections as part of my treatment. I just have the doctor do them because I have to get monthly blood draws so they do it while I'm there. I do give myself bi-weekly Humira injections. Just juiced myself up last evening.
Crohn's is a real bastard. Luckily, between the oral meds I'm on along with the Humira, I've been able to stave off surgery. I was headed down that road when my GI tried Humira as a last resort. Luckily, it's been working for the past 4 years I've been taking it.
Best of luck in your recovery!
Pete, ask your doctor about using a transdermal cream.
I did some googling of b12 for Crohn's and there was a lot of agreement that the shots were the best option. Now that I've got a reasonable solution (I don't have to watch), I'll probably stick with this.
Pete, do you also take a multi-vitamin daily? I do...due to malabsorbsion issues, as most Crohn's patients experience.
Pete I hope you get to feeling better soon. Man it sounds like you have had it rough
ha.
you said "stick" with this.
I'm sort of in the same boat Pete. I'm taking Vitamin D right now to see if it helps. If it doesn't, I will be getting shots of that along with the B. My endo is waiting for my bloodwork to settle down a little more before beginning that. It seems my malabsorption is just as bad but hasn't been treated for years, which mostly explains why I can barely remember my name these days.
Glad to hear you're on the mend!
Pam
Pete, do you also take a multi-vitamin daily? I do...due to malabsorbsion issues, as most Crohn's patients experience.
Oh yeah. Multi, calcium (because of the years on steroids), and fish oil (to help with the inflammation).
Thanks all. Baby steps all the way.
How's the post-surgery recovery going? Hope you're feeling better.
Geez, I'm always late to a thread. I hope you're recuperating well, Pete! :)
I would learn to administer the shots ... if really stupid diabetics can do it (and trust me, I met a number of both stupid and crazy diabetics over the years), so can you. Heck, it's got to be easier than mainlining or skin-popping, which even the most trembly-handed, strung-out junkie can do.
You'll have better infection control that way. After fewer than a half-dozen, you'll be shooting up like a pro.
Can you get the mrs to do it? My sis has to use embrel and I think her hubby does it for her. When my SIL was donating eggs, she had to have shots, my bro would do them for her. Sometimes its easier to let some1 else do it. Or if its not in too private of a spot and one of your kids is old enough/responsible enough...let them do it? They might want to surprisingly, I was always my mom's "nurse" as a kid. It made me feel needed and like I could help out. Being the youngest there usually wasn't a whole lot I could do.
Mrs. Z is even worse about these things than I am. Fortunately, it's only once a month now that I'm through the initial set. We've got a family friend that'll handle those.
On a new note, I'm going in to the office tomorrow for the first time since the surgery. Wish me luck.
hey, i'm bringing a nurse with me tomorrow -let me know if you need her to poke you.....
(she told me she won't meet strangers off the internet, though ..I'm pretty sure she doesn't believe I've ever done that/intend to :lol:)
Mrs. Z is even worse about these things than I am. Fortunately, it's only once a month now that I'm through the initial set. We've got a family friend that'll handle those.
On a new note, I'm going in to the office tomorrow for the first time since the surgery. Wish me luck.
What about your kids? Honestly, I can't tell you how much I loved helping my mom during her health issues. It might make them feel better. It sounds like a strange concept giving them that responsibility, but they love you and I'm sure they'll love to help. I do wish you luck! My first 2 days back at work culminating in me hiding in the bathroom and calling in sick the 3rd day. I'm a wimp though.
What about your kids? Honestly, I can't tell you how much I loved helping my mom during her health issues. It might make them feel better. It sounds like a strange concept giving them that responsibility, but they love you and I'm sure they'll love to help. I do wish you luck! My first 2 days back at work culminating in me hiding in the bathroom and calling in sick the 3rd day. I'm a wimp though.
Actually, I think one or both of the girls might do it after they've seen it done once.
But they're both leaving for college in August, so that'd be a short term thing.
I went to see the gastro yesterday 'cause I'm still feeling like crap - cramps, nausea, general abdominal pain. And he's finally willing to admit that I should be feeling better by now. He's been waiting to see if it was just post-surgery healing.
So now he figures it's one of two things:
A) The surgeon didn't get all the active Crohn's disease.
B) I have bile acid diarrhea.
There's a valve between the small intestine and the large intestine which got removed when they did the surgery. (I didn't realize I had one nor that they took it out) When they remove your ileocecal valve, some people start having the bile acid diarrhea.
So I had blood drawn yesterday to see if I've got active inflammation with further testing possible once that comes back.
I really don't know which to hope for. At least they're starting to work on the issue now.
What are the solutions for either problem? Former: getting opened up again? :(
Hope it works out really soon, Pete. :comfort:
It's pretty much drugs one way or the other. For A, it's back on the Crohn's drugs. For B, there's another drug, Questran. Both have quality of life implications.
Both have quality of life implications.
I'm sorry. That sucks. I guess your current situation has quality of life implications too, so it will wind up being a lesser of two evils kind of thing.
Sorry to hear that Pete. Are there any diet changes that might alleviate some of your discomfort?
I'm sorry to hear about your situation Pete. I hope everything will work out better.
oh no. I'm so sorry. I'd be seriously pissed if it were me. I hope you find the answer and something that works to improve your quality of life soon.
Just got the call from the doctor. I have active inflammation. I'll need to do a CT scan next week to rule out abscesses or tears.
Still the most likely culprit is Crohn's that didn't get removed.
Onward.
I'm told that the inflammation tends to recur at the site of the resection. Perhaps that's the trouble?
[I'm sorry]Pete, it sucks so much to read about the pain you're in. Before they make you go through another surgery or put you on hardcore meds, I beg you to give the
Specific Carbohydrate Diet a try. At least give the amazon reviews a read. These are real people who had debilitating Crohn's that is completely in remission. Just give it 3 weeks and see if you feel better. It can't possibly be worse than the dietary restrictions you have now due to pain, right?[/one-trick pony is shutting up now.]
Results from the CT scan show inflammation and narrowing at the site of the surgery - Crohn's reoccurring.
I'll be on steroids for a couple of weeks and then we'll talk about maintenance treatment.
The good news is that I should feel better RSN.
Clod - I could never have considered that diet before the surgery. Because of the narrowing of the small intesting and the big fat bezoar sitting in front of it, I could not pass any vegetable matter. Whatever I ate had to be completely broken down before it got to the end of my small intestine.
So my current diet looks like this:
meat, cheese, clear liquids, anything powdered (like white flour), powdered mash potatoes, white rice. That's it. No fruit. No vegetables. So you can see that I would never be able to skip the carbohydrates.
Since the surgery got the worst of the narrowing, I may be able to broaden my diet once they have the new problems under control. If my diet gets broadened enough that I can get my fill of fruits and vegetables, I may give it a shot. I've been dreaming of chilled plums, garbage salads, and tomato sandwiches anyway. I haven't been able to have any of them in 25 years.
Pete, can you drink tomato juice?
Pete, can you drink tomato juice?
In small amounts with other food. But I generally don't because it makes me uncomfortable.
In small amounts with other food. But I generally don't because it makes me uncomfortable.
That sucks. It's about as liquid-vegetable as you can get. Get well soon.
Clod - I could never have considered that diet before the surgery. Because of the narrowing of the small intesting and the big fat bezoar sitting in front of it, I could not pass any vegetable matter. Whatever I ate had to be completely broken down before it got to the end of my small intestine.
So my current diet looks like this:
meat, cheese, clear liquids, anything powdered (like white flour), powdered mash potatoes, white rice. That's it. No fruit. No vegetables. So you can see that I would never be able to skip the carbohydrates.
Since the surgery got the worst of the narrowing, I may be able to broaden my diet once they have the new problems under control. If my diet gets broadened enough that I can get my fill of fruits and vegetables, I may give it a shot. I've been dreaming of chilled plums, garbage salads, and tomato sandwiches anyway. I haven't been able to have any of them in 25 years.
That's the impression a lot of people get, because they're looking at the "final" diet, the one you are supposed to maintain after you are healed.
It's actually broken down into stages, with the most basic intro diet being nothing but scrambled eggs, plain cooked ground beef (made into hamburger patties,) plain chicken (preferably boiled for hours and eaten with the broth as a plain chicken soup,) very cooked carrots (either boiled for hours along with the chicken broth, or cooked and then pureed into "carrotsauce,") and homemade gelatin made with 100% grape juice.
You stay on that for 2-5 days (no longer, because eventually you might go into ketosis like hardcore Atkin's diet people can,) and then you move to stage 1: everything from before, plus pureed butternut squash, homemade applesauce, cooked/pureed pears, pureed zucchini and other squashes. The introduction of the applesauce and pearsauce is your main source of carbs at this point. Pureed veggies aren't very fun to eat, so most people tend to mix them into the ground meat for meatballs.
From there it moves forward, adding additional very well-cooked and/or pureed veggies and fruits at each stage, until eventually you get all fruits and veggies in all forms. The preparation of the food is the key at first, since making it digestible and easy to pass is critical, as you know. Most people report that the diarrhea improves greatly or subsides completely within the first 3 weeks of intro diet plus stage one. The book says don't move to stage 2 until diarrhea is pretty much gone. They also note that you may feel pretty sick for the first couple of days, because you are literally starving out a very well-entrenched infection.
The only foods that are disallowed completely on the diet are those which break down into disaccharides/polysaccharides instead of monosaccharides, because these can't be absorbed by a damaged intestine, and instead hang around to feed infectious cultures. The theory is it's the infections which cause the vast majority of the damage, just like it was recently proven that stomach ulcers are the result of a particularly pernicious bacterial infection. This includes 1.) all sugars except natural fructose and honey, 2.) grains, and 3.) all starchy vegetables (potatoes, sweet potatoes, jicama, etc.) Tomato juice, for example, is technically allowed, but would be a very advanced food, because tomatoes are a nightshade and surprisingly difficult to digest. More importantly, commercially-made tomato juice wouldn't be allowed because retail products all contain sugars and starches and thickeners, which defeats the purpose of the diet.
Anyway, the book goes very in-depth into the gastrointestinal science behind it, I just know the resulting rules to follow. (And my rules would be a little different from your rules anyway--this isn't an autism diet, it's a Crohn's diet that autism folks have modified for themselves, because their enterocolitis is similar to Crohn's, not the other way around.)
Well, like I said I could have not followed it before. The two feet of intestine they took out had such scarring and the bezoar (mass) before it, pretty much acted like a ball valve. Even the carrot stuff would have not gotten through.
However, since that it removed, I have the hope of being able to eat a wider variety of stuff. I'll find out more once the new crohn's is healed up.
Still not sure I could commit to this diet. I like sweets well enough, but could give them up if I can have fruit instead. But I do love bread and am not sure I can let it go.
I have been on steroids for 24 hours now and am already feeling considerably better. It is so good to feel good.
Those of you who are blessed with good health, thank your parents for your good genes!
Glad you're feeling a little better. I will offer no dietary advice. No doctor approves of copius beer :( (except this one :D)
Glad to hear you're feeling better, Pete. Good luck and I hope that you will continue to feel well. :)
Well, like I said I could have not followed it before. The two feet of intestine they took out had such scarring and the bezoar (mass) before it, pretty much acted like a ball valve. Even the carrot stuff would have not gotten through.
However, since that it removed, I have the hope of being able to eat a wider variety of stuff. I'll find out more once the new crohn's is healed up.
Still not sure I could commit to this diet. I like sweets well enough, but could give them up if I can have fruit instead. But I do love bread and am not sure I can let it go.
Yeah, the author talks about how nothing can undo scar tissue, so sometimes surgery is still necessary before you even have a chance of correcting things. For what it's worth, SCD does have baked products made with almond flour (and other nut flours, but almond flour is the best) and they are really truly good. The consistency is more like cake, so you can't make sandwich bread out of it, but most people I've fed them to prefer them over regular wheat muffins/cookies/whatever. I know what a huge lifestyle nightmare it is, though. Not something you can just jump into on a whim. Anyway, I'm glad the steroids are helping, we're big fans of them around here too. :)
Dude, sorry you are going through all that. Keep your head up.
I'm fairly psyched. I met with a Crohn's disease specialist today at the University of Chicago. I will need to go back on the Crohn's meds (no big surprise there).
But the good news is that once the meds kick in, I should be able to broaden my diet from before. I still probably won't be able to tolerate raw fruits or vegetables. But I should be able to have cooked fruits and vegetables with no problems. I've had poor nutrition for so many years due to my diet restrictions. My poor body's not going to know what to do with decent nutrition.
:D
hurrah! Avoid squash, it tastes like shit.
hurrah! Avoid squash, it tastes like shit.
Thank you. I intend to take your advice. :D
Squash does not taste like shit. :p: :lol:
Avoid squash, it tastes like shit.
You just havent had it cooked right