20cm of ileum to be removed this Friday - need advice!

[Julia S]

Hi everyone!

So I'm scheduled to have laparoscopic surgery this Friday to remove a stricture in my mid ileum. Imaging suggests I'm going to get about 20cm of ileum chopped. My doctor assures me that a 20cm resection will not affect my quality of life as my ileal-cecal valve and colon are absolutely fine. Nevertheless, I'm freaking out about losing that length and wanted to ask those of you who have removed similar or even larger amounts of small bowel whether you have issues today or not. Is it true that 20cm is not enough to affect my quality of life post-op? Are there things that changed for you post resection (food intolerances, bowel movements, nutritional deficiencies?) Is there anything that I should be particularly vigilant about post-op after a resection? Any advice/encouragement will be greatly appreciated as I am officially starting to freak out over here!

Ah! Also would love to know whether its obligatory to have a NG tube after surgery or if that depends on the location/length of bowel removed?

Thanks in advance and lots of hugs from Brazil!

 

[ronroush7]

Hi. I had six centimeters removed six years ago. For me , it took a few months to recover. It seems like I can no longer eat the skin of any food anymore. It seemed it was harder to absorb nutrients. When you go to the hospital, make sure that you take things to entertain yourself. Make sure you walk a lot after surgery. Take it easy with your food intake when you first get home. It took a couple of months before they let me lift above twenty or twenty five pounds. Let us know how you are when you can. I wish you the best.

 

[Julia S]

Thank you so much Ron! I hope you are doing fine yourself.

Did you need a nasogastric tube after your resection? Was it laparoscopic?

 

[ronroush7]

I don't think I needed a ng tube. I also don't think it was laprascopic. I personally had to be fed by TPN a few weeks before the surgery.

 

[Julia S]

Thanks, Ron!

Anyone else?

 

[If*]

Hi there, I hope you are able to calm a little. I know it can be daunting with the unknowing but try to focus on how much better life will be with the stricture gone. You should be able to eat again, enjoy life more, once you heal Most look back and often wish it had been done sooner. Bring good slippers and walk as soon as they say you can.
I have had resections, more extensive. 20 cm is small. Keeping your valve is awesome. If you haven't had your b12 checked, do try to keep on top of it.
So, tell me do you eat chocolate? i ask because once you can eat something soft, and the dr. says you can, it's simply wonderful. The taste of a really good candy, preferably chocolate (a little piece of Godiva, or Hershey's, or...) does something to the palate, makes the mouth taste better especially if on meds. (no nuts bells or whistles, just chocolate)
Try to rest, care for your mind and body. Breath in slow, blow out and try to think everything will work out. Try to stop the negative 'what if's'.
I am going to pray for you, that your fear eases, that you mend quickly, that you are restored to better health, so you can truly enjoy your life.

I look forward to seeing your post after, especially when you get the euphoric feeling of being well. Til then, hang in there, I will be cheering for you.

Be well, God bless

 

[The Real MC]

You're going to have some real quiet days during recovery at the hospital.

I can't stand TV anymore so I don't watch it at the hospital (too boring and the last thing I want to see are ads of gooey pizza and fast food). Bring some books to read. Find out if the hospital has free wifi for patients. If they do, bring a laptop to surf the internet and stay in touch over emails. Between the books and internet they were the biggest help to pass the time.

The only reason you would need the NG tube is if you develop a blockage while recovering. This may happen after surgery.

Whatever you do, don't refuse the epidural. You WILL need it when you wake up in post-op.

Walk as much as you can while recovering.

I should precept this by saying I had my gall bladder removed at the same time of resection, so my recovery story may be more extensive than others.

Your abdominal muscles will take a long while to heal. Initially you won't be allowed to drive or lift weights, and simple things like getting out of bed or a chair will be hard. The abs will hurt when you cough or sneeze. Climbing stairs or getting up from the floor will be an ordeal.

The best advice I ever got was to apply cocoa butter to the scars. Buy the paste in a tub (not the liquid) and apply it once a day liberally to the cuts. Wear an expendable shirt over it as it will stain, I usually applied it just before bedtime. Do this for about 6-9 months and you won't have any scar tissue on the outer skin - it worked for me.

Watch your meals. You will be sedentary while recovering so excess calories will pile on quick.

It was a month before I was allowed to drive, about two months before I could navigate stairs, and about three months before I was back to work. I still wasn't back to normal walking until at least a year, there were many times I sat up from sitting at my desk and felt "rigor mortis" in the ab muscles.

Good luck!

 

[Julia S]

Thank you guys! Its incredibly heartwarming and comforting to have such a great group of people to talk to. All advice is being taken on board. I was definitely not planning on taking slippers, for example, and thanks to you guys I surely will now. The chocolate and cocoa butter tips will definitely be put to good use as well.

The Real MC, was your surgery laparoscopic or was it open surgery? A year seems like such a long time to be able to walk normally! Also, why is that we're not supposed to drive after surgery? Is it the narcotics or is it a muscle recovery thing?

How long did it take you guys before your bowel behaved normally again? Is diarrhea the norm after a resection? And if so, for how long approximately?

Also, how long until post-op pain went away (at least enough so that you could go a day with out medication)?

Again, thank you all for taking the time to answer. I wish I could hug all of you guys and say thank you in person.

 

[The Real MC]

My surgery was both, probably due to gall bladder removal. I wasn't allowed to drive because of muscle recovery and I still took pain killers on occasion as needed. My case may have been extreme due to my double whammy resection and gall bladder. I had a pretty long cut halfway across my abs extending from my navel, others have not reported a big cut like that.

I didn't have diarrhea problems. I did have a blockage and had to wear the NG tube for a few days. Post-op pain didn't stop for at least three days. Total time in hospital was 12 days, my case was extreme and others who had laparoscopic had much shorter stays.

Boxer shorts are another good item to wear post-op. Very comfortable while laying in bed.

 

[DEmberton]

You have about 7 metres of small bowel, and about 4 metres of Ileum so losing 20cm isn't a big deal.

I lost 20cm at the end and the valve. I have to have B12 injections because of it, but that's absorbed at the terminal Ileum so you may not need to. Otherwise mostly fine, save the disease fighting back a bit (though I think the drugs are finally working - yay).

Post op pain lasted about 10 days for me, but once out of hospital I only needed Paracetomol. Then it stopped, but for at least a couple of months I would get the odd stab of pain when moving around. The bowels behaved a bit strange for the first 3 or 4 weeks, plus I looked pregnant (and I'm a man); the air they blow in there takes a while.

After 2 months I was going cycling, gained back most of the weight I'd lost and feeling great.

Good luck.

 

[Julia S]

Thank you for the reply DEmberton! I'm very glad that the drugs are working now and I'm rooting for you to stay in remission from now on.

Do you have any dietary restrictions now because of the resection? Can you handle lactose? I've never had a problem with lactose and read that the ileum is very much responsible for helping us digest dairy and I worry I'll have problems with certain foods post-resection.

Your problem foods due to Crohns apart, do you feel your diet and bowel movements are the same now post-resection?

 

[DEmberton]

Do you have any dietary restrictions now because of the resection? Can you handle lactose? I've never had a problem with lactose and read that the ileum is very much responsible for helping us digest dairy and I worry I'll have problems with certain foods post-resection.

Your problem foods due to Crohns apart, do you feel your diet and bowel movements are the same now post-resection?

I've never had a problem with dariy or diet in general. When I do have symptoms things like greasy foods are a bad idea, and fibre can make things worse.

I think in my case I had about 3 months and then the disease started fighting back, though never seriously, but post-surgery I've had more looseness and D than I had before. Whether this is down to the surgery I've no idea, but having the ileocaecal valve removed is meant to cause diarrhoea as is Bile Salt Malabsorption which can occur when the TI is removed. But with treatment I currently have none, so that suggests not.

 

[The Real MC]

After my resection I added high fiber foods to my diet to reduce the big D and keep the stools solid. High fiber breakfast (IE Grape Nuts cereal in the US, wheat bread isn't enough) really helped me stay regular throughout the day.

Dairy foods don't bother me, but I had to cut back the spicy condiments. They would inflame the incision where my ileum used to be, sometimes causing a blockage and a hospital stay.

I have discovered that if I have a milk-based dip (IE ranch dip) along with a mild spicy dip then I am problem free. Any spice comes from a pepper which is an oil. Oil snakes through the piping slowly and coats the intestinal walls, which is not good. Milk (and bread) absorbs oils and carries it through faster while preventing the coating.

 

[Julia S]

Wow guys! Thank you for the wonderful tips.

It's amazing to hear from real people what their real experiences are. Doctors seem to feel its better to just tell the patient that its no big deal rather than to honestly discuss what to expect after surgery like this.

I much rather have diarrhea and know its normal than to have it and think there's something wrong with me specifically.

And its GREAT to hear you guys can still handle lactose. Phew! I would be miserable without dairy products. Cheese does have a lot of fat though, so I wonder what eating cheese would be like.

Anyway, gearing up for the surgery tomorrow. I'm so incredibly scared of the post-op pain for some reason but listening to you guys has helped calm me down a lot!

 

[ronroush7]

Supporting you

 

[Tony H]

Best of luck today