Ileocecectomy experiences?

[TeacherMama]

Hey there,

I've been in a flare since October-more specifically I've had back to back flares since then and I'm scheduled for an ileocecectomy on Friday. I'm excited. Is that weird? I have a lot of hope that this will go well and I can start to get my life back. I've lost nearly 30 pounds, have had to have blood transfusions, two drainage bags, the list goes on and on and you all know what I'm dealing with here.

So, who's had one? How was recovery? I've read the older posts, but I'm also interested in your advice for a better recovery experience. I'm trying to pack on the calories now (which is fun, by the way!) and do a little walking for exercise. I'm planning two weeks off of work and I hope that is all I need because I am out of sick days and don't want to resort to FMLA.

What are your experiences?

Thanks!

 

[Jennifer]

That sounds like what I had done 13 years ago but we just called it a resection (that's the area I had removed though). Mine was laparoscopic with hand assist. I don't think you can really control a better recovery because you never know what you're going to wake up with (mine was supposed to just be laparoscopic and I was supposed to have a cath but I woke up with a fist sized scar and no cath so I had to get up repeatedly to urinate). My recovery took over a month because the surgical site got infected putting me back in the hospital for a second week with 2 more weeks of recovery.

This is the result of my surgery, I hope yours goes as well (without the infection of course!): http://www.crohnsforum.com/showthread.php?t=19406

 

[leithcote]

Hi TeacherMama,

I'm in recovery after having exactly the operation you're talking about. I kept a running diary here on the forum which may help you out, see: [ http://www.crohnsforum.com/showthread.php?t=31526 ].

I think taking only two weeks off work, after your op, is perhaps a little bit optimistic. I could have gone back after this amount of time, but to be bluntly honest I wouldn't have been much use to anyone. Post-surgery, you really do feel very tired a lot of the time(!) and you can't do a huge amount.

I am pretty much ready to go back to work now, and that'll be after a good four weeks rest and recuperation.

With regards,
Tony.

 

[Sybil Vane]

Two weeks is very optimistic, I hate to say. It also takes a long time for your intestines to get used to having that portion missing. I was practically incontinent for a few months, but I was opened up and it was my third surgery. I was in the hospital for two months with complications. Don't push yourself for a two week recovery. I think 4-6 weeks is more realistic. Without the valve, you have nothing holding the tide back so-to-speak, and you can't absorb bile salts adequately, so if you have problems with urgency, call your doctor and they can give you Questran powder or Welchol. Questran saved my life. Also, make sure they check your B12. Mine dropped quickly and I have to have injections now.

 

[leithcote]

The ileocecal valve (IV) is an odd, but very interesting thing!

For some people, it is a genuine valve, controlling the flow of matter from the end of the small intestine into the large intestine, like for Sybil Vane. However, in others (i.e. me) , it seems to serve no real practical purpose, and you can manage perfectly well without it.

I'm one of the luckier ones I guess - as my Crohn's has never presented with chronic diarrhoea, and so far (touch wood) I don't seem to be missing my IV either, and yet t have any diarrhoea. I also don't seem to have any issue with bile salt absorption either...

Again, I think this is likely to be different for each one of us, and will certainly depend on how much small bowel has had to be removed.

I am waiting to find out if my B12 levels are OK though, blood test tomorrow, which will show whether injections will be necessary!

 

[OnMyOwn]

Hi TeacherMama - I'm sorry to say that I am going to agree with the others that two weeks is pretty optimistic. Has your surgeon given you a recommendation on when to return to work? Even if you have the surgery laparoscopically this means you will be under longer which means it may take a while to gain back your energy. My first surgery was in Oct 2011, went in for a resection and came out with a temporary ileostomy. That surgery knocked me on my butt. I took 6 weeks off work and then worked from home for another 6 weeks before I had the energy to get back on the road (my job involves a lot of travel).

I had my second surgery 5 days ago to reverse the ileostomy (yay!). My energy level feels a little better after this surgery, but remember it is still a major procedure and you have to allow your body time to heal! You also have to allow your bowels time to adjust to the trauma they've been through. My doctor says it will be 3-4 weeks before I know what my new 'normal' is and has recommended 7 weeks off work for recovery. I think your total time away from work will depend on the type of work you do and how comfortable you are with the bathroom situation as well as how your body copes with this surgery.

In your post you say that you don't want to 'resort' to FMLA. I'm wondering what you mean by this? FMLA is there to protect your job and, if you are taking two weeks off for surgery that time is likely being counted toward FMLA unless you've just told your employer that you're going on a two week cruise? It is to your benefit to register your leave as FMLA qualified, that way if there are any unexpected complications your job is protected (assuming you qualify for FMLA) for up to 12 weeks. It is also important to register your leave as a medical leave if your employer offers any short term disability benefits - this way you may be able to get paid for your time out without using any of your sick/vacation time.

My suggestions for recovery: Get moving as soon as possible. Take it slow on reintroducing foods post-op. Give yourself time to heal. Drink plenty of fluids (once you are ok to do so).

Hope this helps! Best wishes to you!