Old topic sorry. Advice for living w/ ileostomy?

[Green Tea]

Prior to surgery my exercise routine was improving almost daily, but post LAR surgery and Lymphadenectomy I've been setback a lot to where I struggle just to walk for an hour because I feel tired and weak. I hoped by now to at least feel not tired and weak anymore. It is 17 days post surgery.

Questions: Did others recover faster or do I need to be patient and adjust my expectations? How soon after LAR surgery did others get back to a sorta normal exercise routine?

Note: If you feel you have "low energy" it's best to avoid the so-called "energy drinks" as they can do more harm than good:

https://www.telegraph.co.uk/health-fitness/diet/nutrition/energy-drinks-dangerous-britains-teens-hooked/

Also: It would be good if you could find a Certified Oncology Nutritionist (CSO) in your area to evaluate your current diet.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65511&p=508736&hilit=%2Acertified+dietitian#p508736

[jts]

Prior to surgery my exercise routine was improving almost daily, but post LAR surgery and Lymphadenectomy I've been setback a lot to where I struggle just to walk for an hour because I feel tired and weak. I hoped by now to at least feel not tired and weak anymore. It is 17 days post surgery.

Questions: Did others recover faster or do I need to be patient and adjust my expectations? How soon after LAR surgery did others get back to a sorta normal exercise routine?

Late reply here. Strava tells me it was about 5 weeks after surgery that I started riding my bike again, but that was almost exclusively 10-20km per day to/from work or to/from chemo. Started chemo about 6 weeks after the surgery, and that really ruled out any real exercise routine. Those 10-20km per day were the highlight of my day, though. Highly recommended if you can manage it.

[JP66]

Prior to surgery my exercise routine was improving almost daily, but post LAR surgery and Lymphadenectomy I've been setback a lot to where I struggle just to walk for an hour because I feel tired and weak. I hoped by now to at least feel not tired and weak anymore. It is 17 days post surgery.

Questions: Did others recover faster or do I need to be patient and adjust my expectations? How soon after LAR surgery did others get back to a sorta normal exercise routine?

Late reply here. Strava tells me it was about 5 weeks after surgery that I started riding my bike again, but that was almost exclusively 10-20km per day to/from work or to/from chemo. Started chemo about 6 weeks after the surgery, and that really ruled out any real exercise routine. Those 10-20km per day were the highlight of my day, though. Highly recommended if you can manage it.

Thanks for that.

It turns out the primary issue was anemia caused by low iron. Got my iron levels up to normal, and I'm feeling much better and back to a normal workout even though I'm in the middle of 3 months of FOLFOX -(at least normal by my new standards, lol).

Anyways, saw your post on the RockRobster memorial thread and noticed your signature showing Stage IV which made me look at your past posts for an answer to my next question (obviously I didn't find an answer hence my question:)

Questions: How was life after your VAT surgery? I saw that you originally opted not to do an ileostomy reversl, but do you still have an ileostomy or if not are you suffering from LARS?

Thanks! Joe

[jts]

Thanks for that.

It turns out the primary issue was anemia caused by low iron. Got my iron levels up to normal, and I'm feeling much better and back to a normal workout even though I'm in the middle of 3 months of FOLFOX -(at least normal by my new standards, lol).

Anyways, saw your post on the RockRobster memorial thread and noticed your signature showing Stage IV which made me look at your past posts for an answer to my next question (obviously I didn't find an answer hence my question:)

Questions: How was life after your VAT surgery? I saw that you originally opted not to do an ileostomy reversl, but do you still have an ileostomy or if not are you suffering from LARS?

Thanks! Joe

I'm glad that got worked out. Was your anemia because of the surgeries and treatment?

In my case VAT surgery was very easy. They did it through a single incision. Right after the surgery they had a drain between my ribs that made moving and breathing uncomfortable, but once they took that out I was ready to go pretty quickly.
Since the surgery, I do not notice any difference in breathing. In theory it's certainly better to have whole lungs, but I am positive the chemo took a bigger toll on my body than a tiny bit of excised parenchyma. I bike competitively, and run and swim when biking isn't possible.

I still have the ileostomy. The topic comes up, but I have been really reluctant to do the reversal. Part of that is that, given my prognosis, I always assumed I had a 1-2 year time window, and I did not want to spend it on the toilet. Even if I make it past the 5 year mark, I will be reluctant, because even the "success" stories I have read for reversal do not sound compatible with endurance sports and the other stuff I value in life. Having the ileostomy is a minor hassle, but there are hardly ever any surprises.

[JP66]

I'm glad that got worked out. Was your anemia because of the surgeries and treatment?

In my case VAT surgery was very easy. They did it through a single incision. Right after the surgery they had a drain between my ribs that made moving and breathing uncomfortable, but once they took that out I was ready to go pretty quickly.
Since the surgery, I do not notice any difference in breathing. In theory it's certainly better to have whole lungs, but I am positive the chemo took a bigger toll on my body than a tiny bit of excised parenchyma. I bike competitively, and run and swim when biking isn't possible.

I still have the ileostomy. The topic comes up, but I have been really reluctant to do the reversal. Part of that is that, given my prognosis, I always assumed I had a 1-2 year time window, and I did not want to spend it on the toilet. Even if I make it past the 5 year mark, I will be reluctant, because even the "success" stories I have read for reversal do not sound compatible with endurance sports and the other stuff I value in life. Having the ileostomy is a minor hassle, but there are hardly ever any surprises.

Thanks for the update.

Unfortunately, I never had my iron levels checked until my doctor ordered a test post surgery, but even before my cancer diagnosis I was tired a lot and anemia certainly could have been a contributing factor, but now I will never know. What I do know is that taking a daily iron supplement has increased my energy levels dramatically, and blood tests show my iron levels back into the normal range AND my RBC count is way up as is my hemoglobin.

Your thoughts on life with an ileostomy versus reversal surgery are super on point for me. Obviously I will wait and see what my PET Scan shows post FOLFOX, but regardless I must say your logic is strong, and when I consider how my life is right now wearing a bag I admit it really isn't too terrible and gets easier mentally and physically all the time. My single biggest concern is diet. Right now I'm not eating the foods I consider cancer fighters because they are generally high fiber. Question for you: what is your diet like?

Thanks again for sharing your history and thoughts; it's been super helpful to me!

- Joe

[jts]

Your thoughts on life with an ileostomy versus reversal surgery are super on point for me. Obviously I will wait and see what my PET Scan shows post FOLFOX, but regardless I must say your logic is strong, and when I consider how my life is right now wearing a bag I admit it really isn't too terrible and gets easier mentally and physically all the time. My single biggest concern is diet. Right now I'm not eating the foods I consider cancer fighters because they are generally high fiber. Question for you: what is your diet like?

The short answer is that I eat whatever I want, including everything on the list of "do not eat" stuff they gave me after the initial resection.

At first I was very careful to peel my tomatoes, generally only have cooked vegetables, and chop everything very small. Over time I gradually added things back into my diet, and nothing bad ever happened. I eat salad and fruits almost every day. Other fried, spicy, and high fiber foods have also been fine. Obviously people do get in trouble with obstructions. So I consider myself lucky, that my guts did not get too tangled (or whatever the risk factor for obstructions is).

I guess my points would be:
- the list of foods to avoid with an ileostomy is written with an abundance of caution. Especially right after the surgery, your guts are confused and weak.
- you may as well gradually try to work the foods you like back into your diet. Chop them small and in small amounts and see how it goes.
- be mindful and chew your food.
- drink plenty of water.

[utahgal7]

Hi,

Has anyone heard from Joe (JP66)? I am curious to know how he is doing. Hope he is doing ok.

Paige