Effects of living without a colon

[Ellen467]

In the long run, does living without a gall bladder or colon (neither of which I have), affect digestion and metabolism?

[KatSaved77]

I am 62 and lost my entire colon 30 years ago.  I also do not have Gallbladder.  My problems are sometimes terrible bile, Chronic  Diarrhea and two new ones in the last few years.  Osteoporosis and Potassium deficiency and High blood pressure.  On bp meds.  The more water I drink the more accidents I have from loose stools.  I too am overweight.  Eat like a bird and still gain weight.   It is definitely getting harder to manage the older I get.
I lost my colon because of a drain left in me after hysterectomy.  Massive infection. Major bowel obstructions 3 times.  
The one thing is I manage everything ok, but, this Potassium deficiency has landed me in ER several times.  How do I keep Potassium up? I eat foods I in Potassium.  The pills come out totally whole!  Any suggestions?

[Mommyx02]

I have a disease called familial adenomatous polyposis with Gardner's syndrome and had my colon and appendix removed when I was 16. I have a lot of stomach pain and have pain when food is trying to digest. I have learned about alot of foods that hurt way to much when I eat them.

[JonathanS]

I had Proctitis that was out of control, tried many treatments, infliximab, methotrexate, steroids but none worked, constant bleeding a loose stools throughout the day with little or no warning, this was my life for 4 years. The only thing left was surgery but because of where the disease was i would have to have my colon rectum and anus removed. After an epidural and a portion on my insides roughly the size of a baby was removed my recovery was relatively fast, i was told expect 10-14 days in hospital, i was out in 8 and at home with family. The adjustments i have had to make to compensate for this have been slow moving but good, i have a permanent ileostomy fitted that i have to change daily but empty throughout the day, simple enough to manage, the waste is very watery for the most and smells nothing like faecal waste, nobody can smell it either through the bag, this was a concern for me before the op, as long as you keep air in the bag no ulcers form around the stoma. I too gained weight, hit depression feel tired all the time as i got an infection within the body cavity, the only access currently is a drain hole where my anus used to be called a sinus but that is real small and constantly leaks either blood or infection slime. Mostly i am glad that most of the pain, incontinence and bleeding caused by the proctitis has gone, yes surgery is a cure for what i had but a very extreme cure and i now have a scar from just under my sternum to my pubic bone. I hope this gives anyone thinking of having the procedure done some insight from my view, generally i feel ok, started losing weight by going on a nutrition plan from Herbalife and fingers crossed, so far in 2 weeks nearly i have lost 9kg in weight and have more energy so here's to the future people.

[JonathanS]

I had Proctitis that was out of control, tried many treatments, infliximab, methotrexate, steroids but none worked, constant bleeding a loose stools throughout the day with little or no warning, this was my life for 4 years. The only thing left was surgery but because of where the disease was i would have to have my colon rectum and anus removed. After an epidural and a portion on my insides roughly the size of a baby was removed my recovery was relatively fast, i was told expect 10-14 days in hospital, i was out in 8 and at home with family. The adjustments i have had to make to compensate for this have been slow moving but good, i have a permanent ileostomy fitted that i have to change daily but empty throughout the day, simple enough to manage, the waste is very watery for the most and smells nothing like faecal waste, nobody can smell it either through the bag, this was a concern for me before the op, as long as you keep air in the bag no ulcers form around the stoma. I too gained weight, hit depression feel tired all the time as i got an infection within the body cavity, the only access currently is a drain hole where my anus used to be called a sinus but that is real small and constantly leaks either blood or infection slime. Mostly i am glad that most of the pain, incontinence and bleeding caused by the proctitis has gone, yes surgery is a cure for what i had but a very extreme cure and i now have a scar from just under my sternum to my pubic bone. I hope this gives anyone thinking of having the procedure done some insight from my view, generally i feel ok, started losing weight by going on a nutrition plan from Herbalife and fingers crossed, so far in 2 weeks nearly i have lost 9kg in weight and have more energy so heres to the future people.

[Debbiej17yr]

Yes, it's very much a Problem

[Lulalula222]

I had half of my colon removed when I was 33 because of cancer, and the rest removed at 50, also because of cancer.  This operation was meant to attach the small intestine to the rectum, but unfortunately I developed a tear in the join which resulted in severe sepsis and multiple organ failure. They had to re-operate to clean out the infection and gave me a loop ileostomy. I spent just over a month on life support in ICU and a further 3 months recovering on the ward. I had my ileostomy reversal 18 months after that and am having a flexible sigmoidoscopy in March 2016, which I hope will give me the five years' all clear.  It's been a hell of a journey; my marriage didn't survive so I had to deal with that as well. Health wise, I'm much better than I was - dehydration is the biggest problem I face, apart from the embarrassment of having to use the bathroom a lot, complete with foul gas and diarrohea.  I use fibregel to try and bulk things out a bit, but after 8 months of this, the effect seems to be wearing off, so I might need to adjust the dose. I use Norimode (immodium) if necessary, and drink rehydration sachets for electrolytes, daily.  The dehydration causes me very painful leg and foot cramps, especially at night. Food wise, I feel like Alice in Wonderland a lot of the time - it's mostly guesswork as there doesn't seem to be any real pattern. I try to keep to a low fibre, low residue diet, which means little or no fruit, only root vegetables, white pasta and bread etc. No red wine! Only a little white wine :( No curry or chilli. No mushrooms, sweetcorn or peanuts etc. But, I'm alive and lived to have two healthy grandsons; and no-one expected me to ever leave the Intensive Care Unit so every day is a gift, and the bloating, gas, colic, cramps... well. If that's the pay off, so be it. Good luck all.

[Robson80]

Hi all im 35 now but at the time of all surgery I was 29 I'm just wanting more advise back in 2009 my large bowel bowel after I was choking on pizza crust some one gave me the himelick menouvere which twisted my large bowels broke 7 ribs and bruising to kidneys, then from then 6 months past I was getting very unwell and then found out my large bowel had became escheamic and after months of tests trying to get it working feocal vommiting the finally had a total coloctomy which was fine for the first 4 weeks and then 3 weeks later they said my small bowel picked up the characteristics of the large bowel and just be came non existing so just to have any life I take 4 movical a day 3 fleet enemas a day and my own little machine to do bowel washouts and then laxatives on top to just keep going Iv been doing this for 7 days I also have a sacral nerve simulater in which is helping a little but I'm still in hospital maybe 4/5 times a year for blockages at present I'm in hospital again been in 2 weeks and they saying I'm running out of options now as the small bowel looks like it's just not functioning at all really causing stomach distension feocal vommiting and 9/10 pain but with losing my large bowel I no I'm running out of options as I feel in well my heart rate is now super fast which gives me shortness of breath pain all my body aches and haven't eaten food properly in 3/4 weeks just getting fluids and nutrients through a drip they want to take me to theatre on Monday 4/4/16 to see if they can remove and adhesions and check on my stomach I'm coming to the point where I'm running out of options would be greatly appreciated.
Also if any body on here have heard about small bowel transplant and the what the criteria was for wanting to ask about this.
I'm only 35 years old 3 children and my husband and would just love your feed back or any help
Regards Michelle

[deemag]

Hi l have lived without my colan for 21 years. Initally l had an iloestomy and a cholestomy formed which l thought was the end of my life as l new it. However 4 years later l had both reversed at st marks in london. I no this sounds wired but the first time l went to the loo in a coventional way l was so emotional l just couldnt stop crying. Anyway following on from that l never looked back ok l need to take imodium on a regular basis but my life is full and happy l work fulltime l play netball twice a week. I have recently become a grandma and life is good, towards the end of the days l do need to be more aware of were toilets are and the amount of times l need to go to the loo very much depends on what l eat but you get used to that over time infact it hardly impacts on my life now x

[Heathermac7]

Sokaiya, here is my story. I was bulemic for about 16 years of my life and hooked on laxatives. Due to taking 40 pills a day, Icaused my colon to stop working "dis motility". I had a total colectomy as a result in 2008. I am 48 years old and still playing hard. Last year I finished a 50K ultra marathon and 2 full marathons within a 4 week time.  Yes I get very lethargic, more than others, so I enjoy my naps. Yes, my sodium and potassium are always low and so is my hydration, so I allow myself plenty of sweet potatoes, bananas and chips.  I have to carry electrolyte pills with me as the sugary Gatorade and Gu packs go right through me.  Post exercise and for breakfast I find that Ensure or a protein shake really are a necessity.  All my stool is liquid no matter what I bulk with. But to be honest I enjoy the quick and easy bathroom runs - pun intended...

Now here is the kicker. Nuts, seeds, popcorn, apples, oranges, raw veggies, corn, peas and other hard digested foods hurt like a  bug bar and feels like I have a baby kicking at my bladder when they pass.  So I have really gotten creative on nutrition. My problem now is that my small intestine has prolapsed down all over my pelvic floor. I can't get any doc to fix it.  

[Lynn5585]

clark.***@****
We havexpect nearly exact stories, Heather, except that I no longer have a galbladder.  What is the remedy/effects of your small intestins on the pelvic floor? I'm concerned about this now.
LC

[Tlwalsh]

I lost my entire colon from it being twisted by the doctor during a colonoscopy and they didn't believe me when I was screaming in pain something wrong & begging for an ambulance for hours past closing. Finally at hospital a CT showed transverse volvulus and my colon died off while waiting for surgery. Ultimately lost entire colon and my life has changed forever. Lack of nutrition causing joint issues now and heart flutters. It has been over 3 years now and I'm just starting to have some BM's that don't have all the food I've ate floating in toilet. It's been a rough road because people don't understand why you don't feel good or have enough energy to do anything or go out to eat. I've been a prisoner to my home. I try and tell anyone who will listen don't go to Dr Cheruku at Springfield clinic. This woman hid from me at the clinic and I almost died over a routine colonoscopy gone bad. To this day have not got an apology for the way I was treated at clinic. Nurses said I was faking for narcotics. Now I'm on them for life. Digestion hurts. Wished I didn't have to eat food at all. Been to a few doctors who won't help me so I've been left on my own trying to take vitamins an stay hydrated to sustain what life I have. Wished I would have just died that day. Maybe my children could have sued becuase when I turned doctor in the was found to have done nothing wrong even tho I walked in her clinic that day healthy but couldnt walk out.

[DavidBButler]

Your story is awful. I had Hirschbrung's as a kid and had to have my whole colon removed before I was a year old. I may not have had to go through your terrible situation, but I do know how hard it is to live without a colon. I strongly suggest you look into the statute of limitations for malpractice in your state and, if you can, sue that doctor for everything they've got. Don't let any other doctor or nurse put you down or tell you it's your fault or no one's fault or any other LIES. That doctor did this to you and you deserve restitution. DO NOT think it's too late now if you don't know. Look into it.

[DavidBButler]

Your story is awful. I had Hirschbrung's as a kid and had to have my whole colon removed before I was a year old. I may not have had to go through your terrible situation, but I do know how hard it is to live without a colon. I strongly suggest you look into the statute of limitations for malpractice in your state and, if you can, sue that doctor for everything they've got. Don't let any other doctor or nurse put you down or tell you it's your fault or no one's fault or any other LIES. That doctor did this to you and you deserve restitution. DO NOT think it's too late now if you don't know. Look into it.

[Tlwalsh]

I lost my entire colon from it being twisted by the doctor during a colonoscopy and they didn't believe me when I was screaming in pain something wrong & begging for an ambulance for hours past closing. Finally at hospital a CT showed transverse volvulus and my colon died off while waiting for surgery. Ultimately lost entire colon and my life has changed forever. Lack of nutrition causing joint issues now and heart flutters. It has been over 3 years now and I'm just starting to have some BM's that don't have all the food I've ate floating in toilet. It's been a rough road because people don't understand why you don't feel good or have enough energy to do anything or go out to eat. I've been a prisoner to my home. I try and tell anyone who will listen don't go to Dr Cheruku at Springfield clinic. This woman hid from me at the clinic and I almost died over a routine colonoscopy gone bad. To this day have not got an apology for the way I was treated at clinic. Nurses said I was faking for narcotics. Now I'm on them for life. Digestion hurts. Wished I didn't have to eat food at all. Been to a few doctors who won't help me so I've been left on my own trying to take vitamins an stay hydrated to sustain what life I have. Wished I would have just died that day. Maybe my children could have sued becuase when I turned doctor in the was found to have done nothing wrong even tho I walked in her clinic that day healthy but couldnt walk out.

[rasquirt73]

I had my whole colon and part of my rectum removed in 01/03/2002  and a reversal 04/08/2002 I was only 29. In 2005 I eneded up in ICU for a week from a thyroid storm, I almost died. I have a j-pouch and from 2006-2014 I have been in and out of the hospital with pouchitis, fistulas, and fissures. It has been rough. Now I have constant rectal pain whenever I use the restroom I bleed and hurt. It interrupts my life every single day. Can anyone hlep me?

[ForgivenGodschild]

Hang in there, and dont worry about venting, we all need it sometimes.

[thegrassisgreenhere]

My son had UC (Ulcerative Colitis).  He was diagnosed at 3 years old.  Had surgery to remove entire colon & rectum at 8 years old.  It was a miserable time for him for about 6 years.  He had an ileostomy twice while they tried to make a J Pouch, which eventually failed.  After 5 surgeries, they decided to just attach the small intestine down to his anus.  Thankfully, his nerves were not damaged.  He does not have accidents during the day, but does at night.  Staying hydrated, good food choices & time of eating before sleeping - play a huge roll.  He does use the restroom 10-15 times per day.  One of the best products he uses is called "Aquafor", a healing ointment to be used on irritated skin down there.  Life is so much better now, compared to those earlier 6 years.  He is almost 12 years old.  I pray for a cure of Crohn's Disease & UC.  It seems like it is much more common now or maybe it's just that more people are willing to talk about it.  :-) Stay positive.  People care.

[greenia73661]

I agree about the sense of humor part. I had my colon removed this last March due to cancer. I try to look at the bright side of things, never getting constipated, no more diverticulitis, can never get colon cancer again....
I look forward to getting stronger and healthier every day, the first few months were rough but now pretty much normal except bowel movements about 15 a day. Prayers for all that have been through this.  Also lost 1 1/2 feet of small intestine, spleen and abdominal lymph nodes.  Life is good

[PhilipCo]

Thanks Trudie for your input.
I lost the majority of my Colon 12 days ago due to dozens and dozens of polyps. They connected my small intestine up to the small amount of colon remaining.
Presently i feel ok, have been out of hospital 4 days but i am unsure what quantity of fluids i should be drinking each day. Do certain foods slow the movement through the bowel because at first it was a real problem, having 20 instances each day. It took almost 4 days for my bowel to start working again and during that time i was terribly sick, they never warned me of that!
Even with regards to pain relief i lost out. They couldn't fit an epidural due to erosion of spine and i couldn't tolerate Morphine since it made me sick.
I perhaps need to spend some time reading others posts, so as to know how best to manage  this. Thanks.

[PhilipCo]

It's reassuring to know that you are coping without your Colons, I have just been told today that i need to have mine removed.
It's quite a shock being told that and it takes a little time to sink in. I'm scheduled for surgery in four weeks. My problem stems from having loads of polyps, some larger than golf balls. They removed some 4 weeks ago and none was cancerous but they stated that it was dangerous to remove others, so i wont know until after the Colon is removed whether those are cancerous or not.
I'll keep you all informed.

[Rv062014]

How many bowel movements do you have a day?  

[MsJullie]

I had my entire colon removed in 2004 (at age 49) due to the hundreds of cancerous and pre-cancerous polyps found in my colonoscopy. I seem to have FAP. The first six months were pretty tough. But the surgery itself was not so bad.  I lost a lost of weight that I didn't need anyway, and I really suffered from the diarrhea.  My bowel frequency was sometimes once/hour for a while, oh --  and no coughing, laughing, sneezing, sudden movements and , honey - that is NOT gas you want to pass.

I was not ready for work for about three months, and then, still had to be close to the bathroom.  I had to take it with humor.  I told my doctor I could write a book about bowel movements and their infinite varieties.  Much of the outgoing looked exactly like the ingoing!  I couldn't eat anything green or tree-like in shape, or corn, or peanut products, or much oil, or alcohol, or spicy stuff at all.  Over time, though, I have mellowed out on the frequency.  Normal now is 3-4 daytime/ 0-2 nighttime pit stops.

I have had about 10 intestinal blockages due to adhesions. Only one of those required surgery, and the Dr. nicked the area with his scalpel and it popped .  Much infection after that.  It was extremely painful, smelly and took a long time for the incision to close.  Out of work that time nearly four and a half months.  Many types of exercise hurt my scars now. Looks like some of my intestines or abdominal tissue healed adhered to my skin.

I never had the bag, they simply hooked up small intestines to the rectum.  My skin is still sensitive, and picante foods do give that dreaded second burn.  I find I have better retention of stools if I eat the first few bites with a starch or protein.  If my first bites are vegetable, everything shoots through faster. Otherwise, I eat most anything I want to eat.  But my energy level is much lower.  And I still have the occasional 20-pooper day that wipes me out.  Over all- things are nearly normal, and I'M STILL HERE!  Have hope.  I still do what I want, when I want and If I never told anyone, they'd never know.

[RAS340]

I am going to try to go without the pain meds  ...they slow metabolism and slow breathing so are counter productive. I am sure I've already seen more "substance" to my stools.

I'm going to get up out of bed more, maybe sitting of a comfy couch

I'm seeking activia yogurt as a good way to start to eat easier...IDEAS?

[RAS340]

Thanks, for your reply the sad part is my surgery isn't to reduce pain or complications, I had returning precancerous adenoma's/polyps. My Surgery was on the 3rd I entered on a Tuesday morning, I spent ten days hospitalized and was released on the next Thursday. Sadly I did not learn much to better my situation from my Dr.,  and I have to be honest I've endured allot of discomfort. I already spent my first night home in an ER, my wound was partially infected and opening/oozing.

Gas will cause pain, and the meds do not work on the gas pain.
Sugar and dairy are two things that cause gas

ANY TIPS ON HEALING AND WHAT PITFALLS TO AVOID AND WELCOME  Thank you

[jmbaird]

It took me a long time to get better. I do believe that the healing process really depends on the person. I went back to work 2 months after the sugery but ended up in the hospital 3 months later. This is not anything to play around with. Keep in touch with your doctors and let them know how you feel and how everything is going. Keep a journal on everything so that you do not forget anything. This will help.
It has been 8 years and I live a normal life as best as I can. I hate public restrooms, I think that is the worst thing for me. I drink lots of water because I can and have gotten dehydrated. I can't eat a lot of things that I use to love. Still love it but I have to weigh the consequences. I do feel so much better over all and would do it again if I had to do it over. It is so much better than living in constent pain.

[RAS340]

Hello all, thank you so much for sharing your experiences.
I'm a 45 year old male about to go through the surgery. During a colonoscopy about 10 months ago the Dr. found polyps, they were removed, biopsied and found to be precancerous (on one side of the colon).
The GI Dr rescheduled me for another colonoscopy and 3 months later they were back. I was referred to an Oncologist, who did genetic testing etc. and referred me to a Colorectal Surgeon who again found colon polyps, this was about 3 months after the last inspection.  
I am opting to have about 80-90% of my colon removed.
I'm trying to stay optimistic. The rest room breaks should not be an issue at work. I know it will take time to adjust. I've scheduled 6 weeks vacation/sick leave and hope to be able to return to work "light duty" after that.

Based on the experiences of those who've had the surgery is 6 weeks enough?  

[roby5231950]

I had ulcerative colitis for about eight years before they decided to remove my colon in about 1993.  (By that time the excessive steroid use had ruined my left hip, so that got replaced in 1995.)  I had a procedure where they fashion a "bag" out of the end of your small intestine, so after having a temporary ostomy bag for about six months, the surgeons removed the ostomy and you are theoretically "normal".

It took some getting used to, for six months or so, and my stool is very watery, but other than a lot of trips to the restroom, I live a normal life.  Spicy food can burn, so I take fiber to slow things down, but only on an as-needed basis.  I am vigilant about hygiene to prevent chafing which can be painful.  But I still backpack (one night in the bush max), bicycle (sometimes 100 miles), walk and eat anything I want.  I don't think I consume more water than the next guy.  Sometimes I regret a spicy dinner, or that last glass of (red) wine, 'cause I have to hit the restroom several times at night.  But on the whole, the minor concessions are trivial compared to the ulcerative colitis nightmare.

[BCV32]

i'm 32 years old with no colon this is the first time I've really talked about it over the internet I was diagnosed with ulcerative colitis when I was 15 it got so bad that they told me if I don't respond to the antibiotics and steroids that they had me on through an iv that I would have to have emergency surgery luckily through the grace of god I responded in a good way to the meds so years went by then in 2010 I had my colon removed it was so perforated that they had to take a piece of my small intestine out also recovery was to least say painful I had to wear a bag for three months while I worked that was a challenge but they reversed it when they did I went home 8 days later I had a fistula which came out right under my bellybutton that took about three ties to fix they finally went in and glued it back together and luckily it worked then in 2012 I had two anal fistulas which is very painful to fix that they had to put seatons (rubberbands) in there he put two down there but one remains because the other one lets say came out that's my story in a nut shell if anyone has any advice please post back

[grrgw]

My girlfriend had her Colon removed but she's in a Coma,I know the Lord Jesus will save her,can you live without pain ok?My girlfriend also has M.S,please pray for her she's only 56.

[nuu2this]

I had my gallbladder removed in 1998. And now facing the real possibility of my colon being removed. I am 46. I have chronic fatigue now (please tell me that will NOT get worse) I have had diarrhea for 15yrs!!! So if that is the MAJOR thing I have to get over, I have it covered!  I already take Multi-vitamins, B 12, Vitamin C each day.  And I drink a LOT of water (I don't drink soda's or anything with sugar)  I DO LOVE salad! I eat pretty healthy. What kind of changes in my diet/daily life am I looking at making?