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Question for those who have had a small bowel resection

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Crohn's Disease
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Posted 6/28/2014 12:57 AM (GMT 0)
So, after my hospital stay a few weeks ago, I have generally been doing fine. Small amount of pain here and there, but I'm eating mostly normally (although nothing raw). I had my follow up with my GI today and she's pretty determined that surgery is our next move, even though I'm not too keen on the idea (yet). I know it's inevitable eventually, but I'm about to start a new job in about a week, and the last thing I want is to have to ask for time off right away. I

'm on one Humira pen every 2 weeks, I was hoping she'd be willing to go up to once a week (as she'd previously considered as an option when we started me on Humira in the first place.) Seems she no longer wants to go that route. She's conceded to an MR Enterography in a month to see what is chronic vs what was acute at the time of the hospital stay and make some decisions from there.

My question for those of you who have had a small bowel resection, how long were you out of work for, and how long were you at limited capacity after going back? As for background, it would likely be just a few inches at the terminal ileum, and maybe the ileocecal valve and/or appendix. There is a small fistula in the area they would have to remove as well. She said they would do the surgery laproscopically. She claims I'd be back at work in 2 weeks, with another 4 additional weeks with no heavy lifting. Is this realistic? I work on my feet 8-10 hours a day, and there is some lifting involved so I'm terrified about how my new employer would take this news! If I can get one more year out of my body I'll at least have FMLA protection, but until then, I have no idea what they would do!
Posted 6/28/2014 2:08 AM (GMT 0)
Hi KMM13,
I just had an ileo-colic resection 5 weeks ago. It was done laporascopically and they took about 9" of terminal ileum, the ileocecal valve and the appendix. I did not have a fistula, so besides that it is a pretty similar surgery. I had a partial bowel obstruction and couldn't eat anything but liquids for about a month before the surgery and lost 15-20 lbs. So I did go into surgery weak and sick. I waited a month before going back to work. I probably could have gone back in 3 weeks, but I am self-employed, and I was still pretty tired and having D at that point. 2 weeks does not seem realistic to me. The pain was tolerable but the D and fatigue made it so I could not have worked that quickly. At 5 weeks out, I am eating normal food, and I am rarely having D. I feel MUCH better than before I had the surgery. I'm still very tired at the end of the work day, but I think I might still be anemic. I was working two part time jobs prior to the surgery and I ended out quitting one of my jobs. So now I'm working about 25 hours a week.

I don't know what to tell you about your job situation, except if you really need the surgery, then you need to put your health first. I don't know how old you are or how long you have had Crohn's. If your problems are not primarily scar tissue, but inflammation, then it makes sense to me that you should try increasing the Humira. Hopefully the MRE will give you more good info. Ask me anything. I moaned and groaned a lot (you can read my old posts) but I am really glad I did the surgery and I'm hoping for a long remission.
Posted 6/28/2014 2:49 AM (GMT 0)
Hi gumby44,

Thank you for the advice! I'm 35, been diagnosed for 8 years. I am able to go very long stretches where I feel great and I can eat just about anything, so I don't feel like I'm even sick a lot of the time. But when it does come, it's sudden and harsh. My most recent flare was likely brought on by a combo of high stress in my personal life, and the fact that I had been eating quite a lot of veggies and whole grains. You know, healthy stuff for the rest of the planet. My body can do well for long periods of time eating like that without issue, but then suddenly it will rebel and I'll get partial obstruction symptoms. I made it from 2009 to last month without ever being hospitalized, minus one quick trip to the ER for pneumonia in 2011. I just feel like since I'm healthy most of the time, cutting me open is a little extreme right now! The worst part is, I know a first surgery is just that. It's likely more will follow. It just feels like opening up a whole new can of worms.
Posted 6/28/2014 1:08 PM (GMT 0)
The veggies in Chinese food brought on my last obstruction, and it was lentil soup before that....so I do understand what you are saying about healthy food causing trouble. That is because vegetables don't break down as well as other foods and if you have stricturing then it gets caught.

The worry is that if you get a full obstruction, you can rupture your bowel, which is a life threatening emergency. Every time you have a flare with inflammation, it causes scar tissue or thickening of your intestine after the inflammation comes down. So if the biologics are not effectively preventing the inflammatory episodes, then it is just a matter of time before a full on obstruction. I was only on Pentasa, and my perception of my symptoms most of the time was "IBS." So I didn't think my Crohn's in my ileum was always active. If the MRE shows that you have a significant stricture after things settle down, then you might want to consider the surgery for the diseased area. After the surgery, it is kind of like starting from scratch, and you may have many years disease free. So having one surgery, doesn't make the next surgery more likely...if anything it may buy you more years of health.

In the meantime, you probably should stick with low residue foods. Cook your veggies to death. I have always been able to tolerate most fruit with the exception of apples. Seeds have never bothered me, but they do for some people. Stick to white bread (I know it is far less healthy) and white pasta, and avoid lettuce, fresh veggies and popcorn.

There are no real good answers. I did not have surgery until I was so sick that I couldn't tolerate any solid foods...only liquids. So I do completely understand why you are hesitant for surgery. I wish you all the best. This disease sucks!!
Posted 6/28/2014 3:19 PM (GMT 0)
I had my surgery in September - it was open surgery and I lost about 3 feet of small intestine. I was very ill prior to surgery (I never would have agreed to it otherwise). I was about 20 pounds underweight, on TPN, IV antibiotics, IV fluids, and oxycodone/oxycontin everyday for about 6 weeks prior to the surgery. The recovery was initially rough and I was in the hospital for 2 weeks, but I was back to work 2 months later. My surgeon wanted me off work for 5 months, but I was getting so stir crazy I started back up part time. My energy level STILL isn't where I want it to be, but that may be due more to the chronic D than the surgery itself. I obviously feel a lot better because I was literally being sustained on IV nutrition prior to surgery and in pain every day, but I would not say I'm in remission. Actually, had an MRE done a few weeks ago that showed some inflammation, so I started back up on Entocort.

I think your surgery sounds a lot less involved, so I would guess your recovery to be more like Gumby's. I feel like I tried everything I could prior to agreeing to surgery and had no other choice, and if you feel like you're in that boat, I would suggest getting it over with. If not, maybe try a change in meds, diet change, and get a second opinion. I did go to the Cleveland Clinic after my first of 4 hospitalizations last summer and they too recommended surgery. Good Luck!
Posted 6/30/2014 3:20 PM (GMT 0)
Hi!  My resection was just shy of 24 years ago and a whole different situation than you have so you can't go by mine.  Gumby's experience sounds very similar to where you are (and I hate to admit it but maybe where I am too!)  I am waiting to have a real sit down talk with my GI a week from Friday to decide the route I go.  I am insisting we know if it is inflammation or scar tissue before I make decisions.  He is currently recommending surgery--I will be getting a second GI opinion if we are still going that route after I meet with GI on the 11th.

Like you, I am heavily considering the surgery versus my current work situation.  But gumby is right----we can not afford to wait for a potential rupture to require the surgery (trust me that was my situation in 1990).  I would be extra careful on your diet right now---lowfibre low residue if you are waiting to make a further decision...I know that is what I am trying to do. 

Oh and having one surgery does not necessarily mean your next one is right down the road.  Aside from a seton placement and a few non-CD related surgeries...I have not had a resection surgery since my big old issue in 1990.  I had an 11 year remission post that surgery.

Good luck and let us know how you are doing.

Posted 7/20/2014 2:05 PM (GMT 0)
I went back to work after 2 weeks and I operate heavy equipment, I get bounced around and there is lifting involved I guess it depends on the individual. but I have a high tolerance to pain. I had 6 inches of my small removed and 5 inches of my large and that was my second time. the first time was emergency surgery my intestines broke open because I waited to long to see a doctor, it was painful but I avoided all the testing that was done the second time. that was my last surgery after that my doctor said I would be intestinally cripple. well good luck hope all goes well
Posted 7/20/2014 2:08 PM (GMT 0)
stay away from alcohol makes a big difference if you need the high talk to your doc about med weed it works wonders for me helps me eat and took away the sick feeling I get when I feel like puking
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