living without a colon

[fafalisa]

It has been four months since my dad has had his colon removed.  He is currently goes to the bathroom ~7-8 times a day and at night ~5-6 times a day since he's been without imodium (immodium).  And he has been getting stomach aches and is anal area hurts from going to the bathroom so often.   Does anyone have any advice on how to alleviate the pain, suggestions for diet, or share their experiences and what kind of medications they took and for how long you had to keep taking it?  How long will it take for him to get better? Are there ways to improve his health?  It saddens me to see him lose so much weight from the surgeries. ~ a concerned daughter

[Morecambe]

Hi - it seems that with these types of surgery nothing comes "for free" - i.e. your father has "gained" from the elimination of the illness that necessitated the total colectomy - but the aftermath of the total colectomy has to be endured...!!

After my operation about five years ago I suffered from frequent visits to the toilet to do a #2 but, without any intervention medication, the frequency of visits gradually lessened to the present level of perhaps ~4 per day and ~0-1 per night.  So the regularity will decline over time.  I did not suffer any stomach pains and I suggest that you seek medical advice on this point.  I could suggest the usual "over the counter" medications such as milk of magnesia and paracetamol (less aggressive in the stomach than aspirin or ibuprofen) - but I may be missing the focus of what is causing these stomach pains.

Regarding the anal soreness, I believe that after a total colectomy, one's motions are more corrosive due to an increased concentration of unmetabolised bile juice passing through what remains of the large bowel.  I found that after the last "toilet paper wipe" it was helpful to perform another toilet paper wipe with toilet paper which had been wetted with soapy water - or just wash around the anal area with soapy water after finishing the #2.  A mild antiseptic/soothing ointment may also help.  When your father is away from home (i.e. in a restaurant etc) take with you a supply of mild baby wipes to carry out this "last toilet paper wipe".

Now - how to try and reduce the number of #2 visits....  I was able to do this by eating some foods that helped to "bulk up" my motions and this reduced both the frequency of #2 visits and, I felt, also "blunted" the corrosiveness of my motions.  A bit like cleaning up a liquid spillage on the kitchen floor by throwing sawdust on it first!!  As a result my motions were altered from "highly liquid" to "muddy/sludgy".

The diet I adopted was along the following lines:-

- increase the fibre content at every meal
- try pulverised fresh vegetables (e.g. carrots, tomatoes etc mixed as a "smoothie") to which organic bran has been added
- similarly, pulverised fresh fruit mixtures to which organic bran has been added
- only brown organic/wholemeal bread
- yoghurts to which organic bran has been added
- no junk food, white bread, colas etc
- and lastly, maybe 2-3 times per day, home made muesli (soak organic oats + bran in milk, add grated apple + other fruits and lemon juice and some nuts.  It looks like wet cement but it tastes OK)
- drink ~2 litres of water per day.
- Oh - and you are allowed Swiss chocolate as a treat !!  Maybe this, and a few other "calorie-rich" treats will help your father to stabilise his weight.

Hope this helps - but remember that your Father's surgeon is responsible for not only the surgery but also the aftermath/recovery so do go back to him/her for any subsequent professional advice.

Please do come back with an further questions.  Wishing your father well...

regards
Morecambe

[TrudieC]

Morecamb has given you some good advice.  Warm sitz baths can help to heal the anal area and I like to use baby diaper rash ointment or at the very least vaseline to sooth the area.

Until he stabilizes he may want to use immodium at least at night.  He also need to stop eating by 7:00 pm so that he isn't up all night with the washroom.  Sugars and caffiene and high fiber raw veggies are really conducive to increasing the output.  He needs to wait until he has hit normal to include those.

He may want to gradually work into the high fiber (sometimes it works initially and not others - for me I had a lot of gas with the fiber and needed to add gradual) and things that will bulk his stool are oats, rice, marshmallows (it really works), pureed apple sauce, bananas, eggs and lean meats.

It will take about 6 months to feel more 'normal' but he will get there.  Do get the aches checked out.  He needs to ensure he doesn't have pouchitis and it could even be that he is having spasms and needs an anti-spasmodic for a short while.

I hope it improves for him soon.  

[mammo]

Don't get crazy over this.  I have 2 sons and a grandson with total colectomies, and they did go thru the many BM's for about 6+ weeks, controlled with Immodium for as long as needed.  He should always keep the anal area clean and coated with vaseline to prevent soreness.  My boys and grandson ate everything, but learned which food would increase the BM's and avoided them, and there aren't many they can't eat.  Fiber rich foods are very important, but don't over do it because it can also be constipating.  No need to drink all that water, what's really important is that all these BM's could cause your dad to become dehydrated, so he should drink orange juice and Gatorade everyday to prevent this. Water can't replenish the potassium and electrolytes lost with the many BM's. Learn the signs of dehydration because if he gets a stomach virus where he is going from both ends, he will become dehydrated quickly and may need emergency hydration. This isn't a big deal just a few hours in the ER with IV's hydrating him, and then he goes home. Your father's stomach pains may be due to him unknowingly trying to have a slow and easy BM since his bottom is sore.  There are flushable wipes he can use after having a BM and he should always put a light coating of vaseline on his bottom until his # of BM's improves.  Bulk building foods, even Metamucil, are amust, avoid foods that are known irritants to the intestine for now.  He will regain his weight, I know it's heart wrenching, I've watched 3 of my loved ones go thru this, so I've done a lot of research.  My son is 38 and had a total colectomy at 12.  He is an avid hiker where he is out in the middle of nowhere for weeks at a time, and there are no special foods out there, and he does just fine.  He is a marathoner, untrathoner, mountain biker, and competes in jujitzu, so a good quality of life is very possible.  He works out and is vigilant with his health, just refuses to let it slow him down.  There are a few foods which he has to avoid completely, but no special diet for him, as he is also an excellent cook.  I hope this helps.