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.  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

[Luckssj]

Hi if one lost his/her colon how does the microbiome work to generate the communication to the brain? Does the Upper GI take over this function?

[Jeannedeff]

I had a total cologne to my about 8 years ago. I still have my rectum. My dr put me on limiting for the diariah and it helps tramendously. It has also decreased over time but I am still about 4 limotil per day. Also use colmoseptine on the anus. It's a huge relief.

[lynn4127]

I had an ileo colonic bypass 2 months ago. The colon is still in my abdomen but not connected to anything. My intestine is connected to the rectum. Does anyone have nutritional facts for living without a colon? I stay very thirsty and nauseous.

[Lulalula222]

I had a sub-total colectomy 6 years ago, and an ileostomy reversal 4 1/2 years ago. I was hospitalised with acidosis, caused by dehydration which meant that my blood became acidic. My symptoms were nausea and weakness. Could it be that you are dehydrated? The colon's job as you most probably already know (sorry!) is to extract and redistribute the water from our waste; so if you have no working colon, the water will just pass straight through causing diarrohea and dehydration.... just a thought... I drink rehydration drinks most days and eat food that slow down the transit; stewed apple is good, as is jelly, marshmallows and I avoid fruit and raw veg. In fact I avoid veg unless it is root vegetable. I live on mostly protein and low fibre carbs. I have heard people recommend a high fibre diet, but I can't handle it myself. Low fibre, low residue. A difficult transition from a former vegetarian! Good luck!

[RichardCranium]

I am new here. An am thiniing about this Colon Surgery.
Let me start with. I am a Para. In the chair since 04. They did some Surgery, where they take a peice of the Hip bone and place it behind the Knee. So it can't be completly bent. Bent knee-No muscles-Pop apart. Anyway. I have no muscle control from the Sturnum down, on the Left side. Where they made the insition,  there is nothing to hold the Colon in, so I am constantly wearing a Rib Brace around my waist. Since there is no colon muscles, it has gotten like a balloon. And the only muscle that works. Is not letting me fart.
My biggest issue is the Gas.

[Carkeys1975]

I had a complete colonectomy, my rectum removed and the lining scraped in Dec.2010. I spent most of the next 2 years in and out of the hospital. I am on 2 types of hydrocodone. 1 with tylenol the other just 10mg. I also have to take valium for the spasms. I feel alot better now, but because of many previous surgeries I have alot of adhesions(scar tissue) and have frequent obstructions and can't eat many foods.  I lost my hair and now my teeth are problematic from malnutrition. Now that my medications are helping, I still go alot and I have accidents. I also have nausea medication. I can't plan alot of things and I have to take my own food with me often. It's been 3 years this December but I am beginning to do better! I look healthier and am working on my strength. 2 of my kids have the gene and need to have it done. They see my experience and don't wanna have it done but my doctors in Vegas says of all the years they have been doing this I am 1 of 2 people they have ever had these problems with.

[homeslice187]

I had a total colectomy at age 16 due to chronic Ulcerative Colitis starting beginning at age 8. I suffered chronic diarrhea for 10 years then I managed to cut my anus from wiping so much. This "fissure" was insanely painful for about 10 minutes after each of the 15 or so bowel movements per day. I highly advise you to be extremely careful so as never to get a cut down there. It took me months to heal from this and the only cure was taking hydrocodone pain killer so that I could eat again without feeling the pain upon pooping it out 3 hour later. Slowly but surely the nutrients healed the 2millimeter cut/fissure after about 3 months of being immobile and losing 30lbs from not eating for fear of the pain. After 4-5 Dr. visits trying to find a Dr. who could heal the cut somehow (one said he might try to superglue it!) we found a colorectal surgeon who immediately put me on Hydrocodone (I was in severe pain and being so young didn't even know about painkillers). I truly wish I had never gotten this cut because even though the traumatic memories caused me to be much more careful about wiping, I had about 3 more severe cuts over the next 4 years. The last one left a skin tag (scar) that would never fully heal so the surgeon cut off the tag. A few months later the region became infected and a golf-ball sized abscess formed causing more sever pain and I had to have it manually squeezed out (insane pain). This healed but a fistula formed at the same time. The fistula reinfected due to fecal matter trapped in there and I got 3 more of those golf balls. Finally the Dr. put a ceton strip in the Fistula to allow drainage and now the 2 fistulas I have are under control and the leakage is not that bad at all (2 years later). I'm worried about having surgery to fillet the fistulas because this could cause permanent incontinence as they'd have to cut through sphincter muscles. They're is a plug method but Dr.'s say its hit or miss. I found after taking hydrocondone so many times for pain that it is an agonist to the opioid receptors in the intestines and slows down smooth muscles contractions. Taking hydrocodone was a God send as it was the first time on 12 years that I didn't have to go poopy diarrhea every 1-2 hours, stay home, not go camping, anxiety pooping at friends houses, at parties etc. The general sense of well being combined with the stoppage of cramps from gas and bloating made me forget about my stomach for the first time in a decade. Unfortunately this medication is addictive and highly controlled. It also has acetaminophen bad for the liver in high amounts. Have had issues of running out a few days early due to taking too much and the withdrawels are hell. But if you can get a regular prescription and control it your stomach problems and diarrhea will be sooo much better. Whenever I had to go poop if I was away from a toilet I would just take 1 or 2 and it would stop the churning in there completely. The other plus is that while you develop a tolerance (and risk taking more than prescribed) your intestines don't! So it will work for the rest of your life. Seriously risk vs. benefit consideration though because of the side effects and people thinking you are an opioid addict (pharmacists being nosy and judgemental). But that is the tradeoff for feeling like you never had your entire colon removed! I quit cold turkey for 4 months to reconsider and at the end decided it was worth all the ********. Just be able to control it or have someone help you by holding it. I raised my dosage from 4 to 6 to 8 to 10 to 12 over a period of 4 years and the Dr. has now put me on Methadone (I've never taken Heroin) nor am I a criminal or druggie. I'm a married man with my first child on the way now. Couldn't have done it without the aid of those opioids. I pooped on my ex-GF's leg during the 4 months of abstention and decided that it was worth it. The methadone works just as well in slowing down due to the opioid receptor agonist effect (methadone is a synthetic opioid). So now I take 5 10mg of these and feel ok (side effect of impotence though). My hope is that I can get back on the hydrocodone or oxycodone or perocoset since these are the ones that have no side effects for me. Only problem is that they are the most abused drugs in the US so people like us who actually benefit from them (chronic diarrhea and mal-absorption from having no large intestine) suffer as a result. We are viewed as abusers when the truth is without it our life is ****** hell! Since taking the hydrocodone I gained 20lbs (130-150) due to the slowing down let me absorb more nutrients and water and my acne cleared up. The goal is to slow down the smooth muscles of the small intestine and nothing has done it for me but Opioids.

Cipro is an anti-bacterial drug so treating diarrhea caused by a physiological alteration (you have no colon) makes zero sense to me. Your diarrhea is not caused by an infection or bacteria, its caused by the fact you have no large intestine whos job is to absorb water, minerals and compact your poop for you.

I've tried fiber and certain foods may help a bit but I'd rather take opioids, feel good and eat anything I want whenever I want like everybody else does. I believe that I should have the right to freely take opioid medication on my own without having to fear a Dr. or Pharmacist taking it away and thus taking away my continence and thus quality of life. Now that I have developed a tolerance (willingly) I would go through the hell of withdrawals while the severe diarrhea would return and I would just hope to die at that point.

Colorectal surgeons and GI's need to stand up for our right to take opiod medications like morphine, oxycodone, hydrocondone, etc. They say "Just take some Immodium." Well that may work for someone with diarrhea who actually has a large intestine but we HAVE NO COLONS!

I used to deal with pooping all my blood out but now that the colonoscopy saved my life I have to deal with life-long diarrhea and Dr's and DEA who have no idea nor care what kind of hell I've lived through and will go through without proper medication. Opiods have been used for thousands of years to treat diarrhea! Why is that now, a man cannot choose to take relatively harmless medication (especially compared to legal alcohol) so he can stop pooping all the time and sleep through the night without waking up 3 times a night soaked in diarrhea.

My advice if you can't stand the diarrhea, cramps, bloating, gas, leaking, sleepless nights - anymore. Ask your Dr. about opiods and get some oxycodone with the lowest ratio of acetaminophen.  -God bless.

[rose111]

Calmoseptine ointment for his bottom is very soothing.  Hope it helps.  Rose

[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.

[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.  

[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