Stoma Reversal Experiences and Post-Op Challenges

hi everyone, am completely new to this but sooo glad to have found this website! Need some info - my husband underwent major surgery in early Feb for bowel cancer and lost about 12" of colon and ended up with a stoma - which caused all sorts of problems - the main one being dehydration, which, i understand from lots of you is a "norm".

Stoma reversal April 20 and we thought that was it - now on the road to recovery. (histology results showed cancel in remission - such a relief!) BUT he is in agony most of the time. Constantly on painkillers for cramps and pain. Also such a lot of anal pain through constantly going to the loo! (almost the same as before diagnosis!)

We understand that things have to heal inside as well as out but does it get better? and does anything special help? He is more or less on a normal (though reduced portion) diet (sensible though - no peas, sweetcorn, peanuts etc.) but is unable to travel more than 10 mins from home because of the panic if no available toilets around.

would be grateful to hear from anyone in same situation.

Hi mouseuk.



You've come to the right place. There are thousands of people on this site who have gone through some version of what your hubby is dealing with.



First and foremost, keep the faith! The worst thing you can do is get down about this. This is so typical it's almost the standard.



I went through the same thing 29 years ago (not cancer though, Crohn's disease - the same outcome though for this conversation). Four months after my 'episode,' I had a reversal. I lost some of my ileum and some of my colon, the two major facilitators of the 'normal' evacuation process.

(I ended up with a permanent ileostomy 9 years later, but that's another story for another time).



Once your body loses the luxury of these regulators of your body's central processing of waste, there are ways your body can learn to make up for their loss. But, it's not a simple process. It is different for everyone based on all sorts of things (which could fill chapters of several books) but it all boils down to one simple thing - how well will your body's remaining digestive system make up for what is no longer there?



Severe pain with lots of meds for a while is normal. Don't rush it. Take your time and relish the fact that there is some comfort from meds. Take the time to really sort out what you can eat and what you can't. It took me 5 years to really get it down. What to eat and what time of day to eat it is imperative to your full recovery. These days there are people like nutritionists who can help. Simply cutting out nuts, etc., isn't good enough. You really have to focus on this part of it.



I enjoy a good steak as much as anyone, but even now I don't indulge in them more than a few times a year. Everything from cereal to veggies to alcohol and even supplements make a difference.



My best advice is to really focus on even the most simple things like coffee/tea/milk or tap water vs. bottled water. It only makes sense that figuring out what and how your new body can and can't digest has a direct effect on how often you visit the bathroom. It will also have a direct effect on the pain issue as well.



Just to give you an example of what worked for me - I ate nothing but oatmeal, bananas, rice, yogurt, apple sauce, honey, and lemon. During the first year, I would introduce different foods one at a time and base the results on 2 simple things - how easy was it to eat and digest AND of course how it affected my visit to the bathroom.



This might not be the right advice for you, but I hope it gives you some sense of what is involved in getting past this first stage of the challenge to come. I'm sure there is a lot more great advice on here as well. Read through as many forum posts as you can. There is a lot of great advice in here.



Best of luck



Be well



Michael



p.s. Don't forget how important it is for you to take care of yourself as well!

Yes! Yes! Yes! Strongandbroken is 100% correct. Don't get down about it. Don't let your husband get down about it either. This is normal... and it too shall pass... I hope! Obviously, no one can guarantee 'cause we aren't your husband's doc, but I can say that I experienced several levels of agony for the first month or so after my reversal in February.



It's the same as when he was given the ostomy. He had to learn what he could eat, how often he ate, what made him more or less dehydrated, gassy, etc. Now, he has to learn all over again, which can be overwhelming when dealing with recovery from surgery. One day at a time!



I'm happy to hear he has some form of pain management. I'm sending you thoughts of patience and positive energy... it's a lot to deal with on so many levels...



Take Care,

Fable

Dear Strongandbroken, thanks for taking the time to reply. Sounds like you've have a rough time of it too.  So many tips so much appreciated and thanks - that's sweet I will take care of myself too. Maybe I should remember your "life is good" motto a little more often! Take care.

Dear fable3, thanks. You made me realise that perhaps we're being a little too impatient! Hope is all still going well for you after Feb reversal - keep in touch and let us know.

Take care

Living with Your Ostomy | Hollister