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Questions regarding Crohn's resection surgery

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Crohn's Disease
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Posted 12/12/2013 6:08 AM (GMT 0)
With Obamacare kicking in next year, and my employer most likely dropping reducing my coverage significantly in 2015, I've finally decided it is time to get this surgery done. My GI has been telling me for over a year to get this done as he believes I will benefit immensely. I just hate the thought of opening Pandora's Box and possibly incurring a whole new set of problems.

Anyway, I am 32 years of age and was Dx'd in 2007. I was hospitalized twice for small bowel obstructions in 2008 and 2011. I currently take Humira. I've had had 3 colonoscopies. The first two were during periods of active disease. They couldn't really tell if I had any narrowing because of the active disease. They did find a fistula connecting a loop of small bowel to my transverse colon.

Two weeks ago I had another colonoscopy. There was no active disease thanks to the Humira. They did find narrowing in my TI and my duodenum. Of course the fistula was still present.

The typical Crohn's symptoms I feel any given day during periods of activity are burning/tenderness on my right side where my TI is, constipation, and vomiting. NEVER do I get diarrhea. Now to my questions.

1. I currently am unable to eat any raw fruits or vegetables. This is due to the narrowing in my duodenum I assume. I will either vomit because it can't get through, or, it will cause problems hours later as it makes it's way through my TI. Given the three problem areas, based on your own experiences, how much small How much of my small bowel will I be parting ways with?

2. Since I've never had diarrhea, is this something I'm likely going to deal with for the rest of my life after surgery? Thinking about bathrooms like that woman in the Crohn's commercial?

3. Will raw fruits and vegetables be allowed back in my diet after several months? I'd kill to eat a salad! My diet is crap right now.

Thanks for taking the time to read this. Your responses are appreciated!
Posted 12/12/2013 3:10 PM (GMT 0)
Hi, So sorry you are having problems.  I had a resection September 13 and had 2 1/2 feet of small bowel removed and a temporary ileostomy. Feeling so much better now. I was told that the diarreah after the next surgery will go away but can be controlled with medication.  I am able now to eat salads after approximately 2 1/2 months of being on soft food.  Although I still monitor what I eat and document daily what I eat, how I feel, how my bowel movements are. Helps a lot. I hope this helps you! Take care and if you have any other questions just ask.  Take care! Sue
Posted 12/12/2013 3:24 PM (GMT 0)
I have 9' of sm. bowel removed, it has caused short bowel syndrome, but I've had two resection s, hence total of the nine ft. I do have loose bowels pretty much all the time, diet, anything I want. It put me in remission with no meds every time, for yrs. cd came back, but in esophageal and throat, canker sore in my mouth. But it's in remission with 1mg of pred. Time released and I use mmj in tincture form, occasionally I have to take low dose Tylenol #3, 5mg. That makes me have normal stool, but to not have constipation I eat lots of roasted beets and then I eat a lot of kale, that works like a charm for me. I was in bad car accident a few yrs ago,(rear ended). So I have back pain, not bad, but I've taken a few weeks off, so I don't need pain meds. Get that surgery, you will be very happy you did.JMHO
Posted 12/12/2013 4:33 PM (GMT 0)
Davis -- I've had my TI removed in 1982 and then a second surgery in 2010 to remove a very bad stricture at the anastamosis site. what you are going through sounds so familiar, pain not being able to eat many foods. Since my second surgery I've not had the pain and can pretty much eat what I like. I might be different that some folks in that D comes and goes. Ditto willowman, you won't regret getting that stricture removed.
Posted 12/12/2013 7:31 PM (GMT 0)
Thanks all! Sue - how come you had a temporary ileostomy?
Posted 12/12/2013 8:49 PM (GMT 0)
Well I had my resection in 1990 so my info may be outdated...and mine was due to a rupture.  I did not know i had CD before my resect, but I sounded very similar to your symptoms.

How much D you have depends on how much they remove and where.  I had 18" at my terminal ileum.  I have a lot of D due to that and no gallbladder---but it is mostly controlled by meds.

I have to say...my resection not only saved my life, but I think it gave me many years after of a nearly "normal" life.  I still don;t eat much in the way of fruits and veggies (but others can).  I eat the less fibrous veggies on my best days or none at all.  I have cheated on some really well cooked broccoli on a really good day (I loved broccoli), but if I cheat it is usually whiter lettuce in a salad.  You will really have to experiement.

Best wishes for a new lease on life and diet afterwards!

Posted 12/12/2013 9:28 PM (GMT 0)
I have what's called, dumping syndrome, but I can handle that, as long as I don't get those awful cramping sessions. I've been bad cramping free for 1 1/2 yr's. I did just this morning had to increase my pred, back to 4mg a day, was just slightly crampy this morning, so upped it a bit. And now I'm great. But yes those symptoms are very familiar. Good luck
Posted 12/13/2013 6:15 PM (GMT 0)

Brief background on me. I was diagnosed almost 25 years ago and had my only surgey 2.5 years ago. It was a resection of the terminal ileum and another foot or two in the jejunum. For most of the first 21 or so years of diagnosis, I bounced back and forth between remission and active disease. My active disease brought symptoms of weight loss, fatigue, loss of appetite, abdominal pain like you describe, bathroom urgency and soft bm's/bordering on diarrhea.

As the stricture developed and got worse, my D-like symptoms changed to constipation. Prednisone was only sort-of helping (because it was a physical obstruction, not inflammation) where in the past it had always helped.

davis7029 said...
1. I currently am unable to eat any raw fruits or vegetables. This is due to the narrowing in my duodenum I assume. I will either vomit because it can't get through, or, it will cause problems hours later as it makes it's way through my TI. Given the three problem areas, based on your own experiences, how much small How much of my small bowel will I be parting ways with?

I don't know that anyone other than your doctor could answer that one. Blocked is blocked. For a lot of folks, it is just at the TI valve. If they just take that, my doctor took the valve and a few inches on either side, including the appendix. If there is more diseased area in one direction or the other, they may take 6-12 inches more, as necessary.

davis7029 said...
2. Since I've never had diarrhea, is this something I'm likely going to deal with for the rest of my life after surgery? Thinking about bathrooms like that woman in the Crohn's commercial?

Everyone is different. My doctor told me going in that the best outcome would be that my remaining muscles learn how to work together again, and you have regular bm's. I had D for about a month before things started moving slowly again. I have to take miralax each night with dinner to keep things moving, and most days I'll have 2-3 bm's in the morning, then I'm done for the day.  Some folks do have the opposite problem where the D doesn't stop. Thankfully, they also have meds for that issue (it has to do with bile absorption that wasn't a problem when your TI was intact.)

davis7029 said...
3. Will raw fruits and vegetables be allowed back in my diet after several months? I'd kill to eat a salad! My diet is crap right now.

If your surgery and recovery goes OK, you should be able to. My doctor told me at one 1-month follow-up that I could start adding things from the previously restricted list (like fruits and veggies) one thing at a time so long as I had small bites and chewed my food thouroughly.

 

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