20 yrs no surgery...first timer ileum resection concerns/Q's

Been lurking on these forums for oh so long, have literally read every first time surgery or anything similar to my condition...but still; ITS NOT ME...so i have to ask :} im 23, diagnosed at 6. had ups and downs but on my first biologic which is cimzia and been on for very close to 5 months. not 100% if its working but id say it is.

i am going to have first resection ever on Oct. 6 2014. it will be lapriscopically. removing an approx. 8 cm of terminal ileum with ileocecal valve, they say colon looks great but im going to assume that some small amount of colon would be removed since valve is going but i have no clue about that; they said colon looks good. also 1 or 2 strictureplasty will be done for minor strictures which i didnt even know was there (minor). Being performed at the Cleveland Clinic in Miami.

Concerns/Q's
**1. I have been bodybuilding since i was 14...im very afraid i wont be able to consume or absorb the 200g protein i used to consume with my 5-6 meals a day of healthy food...this something to worry about? bodybuilding is everything...means health to me...

2. worried about losing the valve and yes i know what it does so no worries to explain. but my concern is the diarrhea...i have had somewhat mushy to solid stools whole life (no issue), ofcourse sometimes diarrhea but nothing like immediately after meals or blood. worried that will change and ill get chronic diarrhea where i cant eat out or even constant worry of bathroom visits(ofcourse who doesnt when in public lol). should i be concerned? i know people have different results with this but seems as if more serious cases have this problem; really afraid though...

3. also with the whole fluids mixing from the valve not being there...surgeon really believes this is nothing to worry about and always says there is no literature stating that this or something like that. is something to stress...long term also?

thats about it...not worried about pouch cuz itll be temp. and very unlikely.]... im not in alot of pain, more discomfort than anything just as if there is traffic on a highway...things are going down but taking much longer and sometimes not till next morning. never had an obstruction but i have been partially obstructed for a bit, still eating and hitting gym and many ensures and boost shakes. sorry for the diary but i think itll help others as well as my self immensely. will be watching thread, thanks :) oh yea was 180 prior to flares...dropped to 155...now at 160; if matters.

Post Edited (SirPeaches) : 9/30/2014 10:39:44 PM (GMT-6)

gumby! yes im so glad you responded;i have followed your surgery already and saw it was somewhat similar. im worried that i will eat and then within an hour or two ill have to rush to bathroom.

Qustions- so for those 8 weeks of chronic D...i mean what does chronic mean? pooping in pants? having to rush to bathroom? very confused on what people mean when they say chronic D.

do you take any meds for the D? also does it effect your life where you are worried about going out with friends or is it just D that you can hold in and its really not an issue? do you think you miss or even notice your valve is gone?

last question- do you have any trouble absorbing foods or with appetite? if you eat too much do you feel like it bothers you or is it just bloated like if a normal person ate too much?

thanks so much for the help; hopefully more people will touch on the subject.

Post Edited (SirPeaches) : 10/1/2014 9:43:53 AM (GMT-6)

I wanted to put my experience out there for you also. I've written some about it but I don't post too much, I'm busy running after my kids. I had a laparoscopic resection in February, they removed about 8 inches of TI and the valve as well as a very small segment of colon. I had no dietary restrictions after leaving the hospital although I did not eat very much in one sitting for a couple weeks. I had lost about 18 pounds by the time I had surgery so afterwards I had to drink ensures in addition to my regular meals to gain back some weight (I am still down about 7 pounds).

I had diarrhea about 6 times a day for the first 2-3 weeks, sometimes there was urgency but most times I felt like I had decent control. After about 30 days my bms were pretty much normal. I did start having diarrhea again (2 days a week) with bad cramping and I was running to the bathroom. My GI started me on Welchol to bind the bile salts and that worked too well, so I was constipated instead of having D. At this point I'm not taking the Welchol and I'm doing pretty well I alternate between D and C but it is not keeping me from doing my normal things. The D I have now usually gives me pretty bad cramps which start well before the D so at least I have a warning.
I hope that helped. Good luck.

Hi Sir Peaches,
Prior to surgery, I stayed away from all raw veggies and high fiber fruits like apples, and stuck with applesauce, and smoothies, etc. Now when I eat things like tomatoes, beans, spinach,etc, it often comes out undigested. I enjoy eating those foods though, and I can get gas pains from the most bland foods like white rice. I really think I'm getting all the nutrients I need...my latest labs look great. I lost about 25 pounds before surgery. I've only gained around 5 back, but I was overweight, so that's ok for me...now my weight is average for my height (5'5" and 145lbs) so I'm ok with keeping the rest of the weight off.

I am due to see a specialist in Chicago in a couple of weeks and I will probably have a colonoscopy at the end of the year. I don't think the Crohn's has returned but we will check to make sure. I suspect I have some adhesions or scar tissue, but I'm just guessing. The specialist in Chicago did not want to put me on maintenance meds. Pentasa was useless, and I can't take 6MP because I had a bad reaction with elevated liver enzymes. My guess is that they will start biologics if/when the Crohn's returns, but he didn't want to start it in the absence of disease. The surgery was absolutely a "success." I was obstructed and couldn't eat at all prior to surgery. Surgery can't cure Crohn's....we are hoping for a long remission though.

Hi! I had a resection about a year ago. Mine was open and I lost about 3 feet of small intestine. I was pretty ill prior to surgery, but young(ish), so I feel like I healed pretty quickly considering, and you are even younger so I think your recovery time should be pretty short. I had surgery on 9/11 and was back to work and off all pain meds and steroids by 11/1. I too had pretty severe D, but it has slowed considerably since then and I never really felt like I would have an accident or severe urgency. Like Gumby, I still notice undigested food when I go to the bathroom and I have worried about whether I am absorbing calories and nutrients, but I have gained 20 (much needed) pounds since the surgery, so it must be absorbing most of what I eat.

I went on Cimzia almost right away and my Crohn's has already returned, but I guess that's just the way it goes. My pain is minimal at this point and I feel like I am functioning as good as can be expected. I work full time and work out lightly (pilates, mild cardio) about 4 times per week. My Crohn's has always been pretty severe and aggressive, so I bet you will be great following you surgery. Good luck!!

I started feeling pain again when eating and went in for an MRE that showed inflammation returned at the 2 sites I had it prior to surgery. The inflammation was much less than before, but I would hope so because I just had a major surgery to remove it! Before my surgery, I was so sick I could hardly eat without throwing up or being in severe pain. I was on TPN for nutrition and on pain meds 24/7. You could actually see a grapefruit-sized mass poking out of my lower right side when I'd lie down. It was horrible. Now, I just start to feel tired, have more D, some minor pain or gas and discomfort, mouth sores, and joint pain. I take tramadol as needed for pain and my symptoms decrease considerably after an injection.

Your strictures could just be from scar tissue, meaning you are actually in remission but need the surgery to get rid of the scar tissue. I don't know how to explain it, but even with the pain of surgery, I felt much better when waking up from the surgery.

Hi Sir Peaches,
I don't know why I have such bad gas pains. This is new since surgery. We thought it was possibly bacterial overgrowth but antibiotics and probiotics have not been helpful. Neither has altering my diet...I've tried every combo I can think of. It's on my list of questions to ask. I don't know how to avoid surgery scarring, and honestly, I don't know if that is what is really wrong.

The one thing I CAN tell you, is that if your strictures are primarily made up of scar tissue, then no meds will ever help, and you have to get surgery to correct it. As far as knowing if the biologics are effective, you will need to rely on your doctor to do proper surveillance....lab tests, follow up colonoscopy, etc. Believe it or not, I'm actually looking forward to my next colonoscopy because I want to know what's going on. Also, most of what I am complaining about is extremely minor compared to how I was prior to surgery. I'm very glad I had the surgery....hopefully you will be too.

gumby- try papaya or papaya enzymes; they helped with my gas as well as digestion! it can't hurt, helped me and others :)

brand-spring valley (yellow cap and label, greenish bottle)
dose- says take 4-5 I take about 5-6. one or two after every meal. they taste great! almost like a mint after a meal.
pretty sure walmart is where I got it but I'm sure publix or cvs or anywhere will carry same brand

I had been on Remicade about 10 years ago and stopped due to recurrent infections. The Humira worked well for several years before I started having symptoms of Crohn's (fevers, chills, diarrhea, fatigue) again. My last 2 docs have not wanted to fail Humira because it doesn't leave many options for me. I have been treated for flares about 4 times in the last two years so personally I don't know if the Humira is working that well or if I just got lucky after surgery. The next time I have a flare I'm going to ask to pull the plug on the Humira and to retry Remicade before I move on to something else.