Life befoer and after total colectomy due to colonic inertia

Hi I had a total colectomy 3 years ago now... Kiel you I had years of not being able to go to the loo properly and going back and forth to the doctors I was 27 and I asked to see a different doctor and he was a private one he did a full examination and told me my bowel had actually prolapsed which was causing constipation it was basically hanging on my a thread... So that week he had me in and I had an operation to put it right... That was great for about 6 months then I couldn't go to the toilet again and again after that .. I went back to see him at my local hospital and there was more underlined problems with my bowel being inflamed so they did key hole surgery for this but unfortunately cut through my large bowel by accident...which they didn't realise until 2 days later when I was sucking up my own feces!! They rushed me to surgery after an xray confirmed my bowel was leaking and they gave me a total colectomy taking away my large intestine leaving just my small one and fitting an ileostomy.. I woke up in intensive care and didn't leave hospital for a good few months after that.. I did have it reversed after about 7 months and still to this day I am not 100 percent.. I find myself running to the loo at times and sometimes it's to late! I really wish I never went there in the first place with my problem..... My scar tissue is attached to some nerves in my tummy which causes alot of pain also my experience was not a good one at all....

I had a total colectomy on August 25, 2016. I had horrible colonic inertia and didn't expel any of the rings that were mentioned in an earlier post after 7-10 days. I had this problem once I went through surgically induced menopause several years ago.

My list of health concerns is long, however, I am still trying to believe that a total colectomy was the best solution as now I have fecal incontinence at times as well as extremely loose stools. I never have any form to them now and believe that I suffer from dumping syndrome. My doctor is wonderful and she is really trying to find a solution for me, however, I feel like I have new problems in addition to the dumping syndrome.

I am 45 years old, woman, in good shape physically and exercise daily. I eat pretty well although I am not a health nut and enjoy NORMAL eating like pizza, desserts from time to time, meat, etc. I do not have a bag.

Any input/feedback is appreciated!

Hi, I had my full colectomy June 27, 2017. I had a laparoscopic procedure with 6 incisions but 3 days later was rushed backed into emergency surgery due to extreme pain. It was fluid accumulation but they thought it was a leak around my connection site. I awoke with NG tube and drains and a very larg vertical scar

I had to have my surgery, I was throwing up stool, I would go 3 months without a bowel movement and I was miserable. I would do all those degrading test where they put a balloon up your bottom and time how long it would take for you to push it out;. I was becoming the queen of colonoscopy and not being able to clean myself out. I struggled with chronic constipation for most of my life my name is jen too. My surgeon was amazing, and once she got inside she didn't realize that I also had a huge colon that due to the colonic inertia it had stretched over time from storing all the waste. I was one sick girl. I did go home too soon and had a small blockage and nearly died but I got to the ER in time. I wish I could tell you that things are good for me but now I have gone to a whole other spectrum and I am so ashamed. Even as I write these words tears begin to form. Now I can't stop going. I go all day long and at night its hard to sleep I am only 46, and I shouldn't have to deal with this issue. Everyone passes gas when they sleep but I can't trust mine.. if I fall asleep and let my gas go I have accidents, which require depends and I hate it. it has been four years since my surgery and I can't stop myself from going to the bathroom, I am so miserable. during the day I am fine because I can go and get to the bathroom but at night when I need to rest its extremely hard to trust myself. now you might think what is the big deal just put on some depends.. I am only 46 I didn't sign on for this. I don't want to wear them my gastro doctor says oh sometimes it takes the body time to adjust okay when will it adjust. I went from one extreme to the next. I take Imodium like it is candy, lomotil and some other drugs but it does nothing. some days I wonder if it would have been better just to let nature take its course. I am not trying to scare anyone, but I feel very alone in all this. I don't have a bag but in the end this whole situation has been one big pain in the butt.
sadly I feel like you see doctors and they just don't get it while they see you for what few moments they can spare you are still the one going home dealing with what you have and they are going home living their lives. Most of my family think that this surgery was great but they are not the ones there cleaning the sheets, crying in the shower ashamed because you had yet one more accident because you nodded off in your sleep and now you are cleaning yourself up wishing none of this was really happening to you.

Hi Jenny, and others. I was 47 when I had my surgery, and it took me about 3 months to begin to somewhat feel like myself. I am three years out. I have survived two blockages. I now take a digestive enzyme before eating and magnesium before bed,for life. (or I will get a blockage) I was able to keep 20% of my small intestine after my first surgery that gave me the colostomy bag and 4 months of colonic PT. I too have about 15 stools a day and where depends to sleep. I am not able to sleep because of my usually 3-4 outlets during the night. My life has changed and its not perfect by any means. I am no longer to take medication orally because it stops the transition in my intestine which has given me the blockages. I have several autoimmune diseases, that include a lot of pain that I have to deal with daily on my own. I think the best advice I have given my self is to try to adapt to the new obstacles life throws our way. Its tough and you still have a long recovery from this surgery. Don't allow yourself to be sad because you have been dealt this bad hand in life. I know it is shameful to have accidents in bed and we cant " toot", it happens to the best of people, we are not the only ones. It will get better, I promise. But its not perfect, its a daily challenge, but remember this life belongs to you! My advise to you on meals, eat small cup size meals at a time. Fresh fruit, yogurt and veggies. Thick meats are a no no! And always have a drink in your hand. Dehydration is real, believe me. I hope I helped you Jenny, our stories are similar, recovery was awful and long, but remember your body will take as long as it needs to.

Sorry, my name is Sherrie

Hello,I was wondering how you are doing?

Hello Brigette, I was wondering how you are doing,and if you had any solutions?

Hello everyone! My name is MeLissa and I am a survivor of a partial colectomy. I have read the stories on here and I can certainly relate!

I am over a year post op and life is VERY VERY different for me. I still struggle with bathroom issues bloating and a lot of air. As someone mentioned earlier, it's hard to trust in my body. I never am sure what is going to happen as I doze off or even attempt to pass what I hoped was only gas. I learned this though, just get to the bathroom, no matter what!

After a year of having my surgery, due to slow colon transit and YEARS of severe constipation, I find myself gaining a tremendous amount of weight and struggle with what to eat. I feel like I stay hungry bcs I am constantly disposing but the fact is, I am just at a huge loss of what to eat that will sustain me, give me energy, not send me to the bathroom moments after eating.

Tonight I send out this message in hopes to hear from someone who is post op and can offer some insight on a diet/new eating habits that have helped them move forward in a positive way. Bless you all and each one of you who have posted to this site, I pray you find answers to help you along your journey. The best advice I can give you is this, learn to be patient with yourself. You are going to endure a lot of drs, friends, and family who don't understand your situation. Don't allow their to validation or lack thereof to determine your next steps. Pray, pray hard. I will pray with you. In the meantime, understand you are the only person who is going to be living in your body, and while you are going thru all of this, allow yourself patience to deal with what you face.

God Bless,
M~

Hello, I just passed my three year mark. I had a total large and 80% small removal. Life is quite different I agree. Our diets are quite different now. I have survived two blockages, and I learned to listen to my body. I can tell you what seems to work for me... My meal size is about a cup at a time. Fruits and veggies mostly, they are easy to digest. I eat soft foods like yogurt,puddings etc. I make a choice of the food depending on my capability of a close bathroom or not. My meats are very thin for easy digestion with extra chewing to help with digestion. My transition in my remaining intestin is slowing down so I take digestive supplements with each meal. I also take a heavy dose of organic vitamins daily. One thing to keep an eye out on it is a serious issue with me and could be for all.. I am no longer able to take any pain meds or any meds like cough and cold sinus etc.. it stops my transition and hence my two blockages. I hope this helps.

Hi Jen, I had my surgery back in 2009 same issue with very one glad I had my surgery in hospital for 14 days which should of been only in hospital for 4 day but had allot of complications with that said.. still had good days and bad days ..

That’s my life everyday it’s battle..

I understand the worry and concern about the future after having a total colectomy, hard to know what lies ahead and whether your status today is permanent. I had my surgery in 1987 after 12 months of hell with agressive UC, and was under 50kg when it was performed. I was 27 and it utterly changed my world. Over the first few years you test what works, whay you can eat/drink and what (if any) meds you need. My biggest issue was psychological, I felt disabled in some way.
Since the op, life has been so good I rarely think about the condition....no pain, no meds, no dietary limitations, fully active (80kg male) and with family and career all under control. For a while after the op I appreciated normal things and vowed I would never take good health for granted again, today I have to remind myself that I am minus a colon, in fact the only issue I have is toilet visits 2-3 times a day which are a tad more pungent than I’d like!
I can’t give anyone advice on how to manage their own condition, but can offer first hand hope for a normal life and self confidence. My job is mega stressful but enjoyable, I travel extensively so manage aircraft toilet issues routinely and have a diet that includes way too much wine, serious curries and chillified everything and virtually no greens (am a celtic salad dodger). The system copes admirably, I suspect the other organs will feel the stress before the residual intestines do.
I remember my GP warning me after my op that “your days of 8 pints and a curry are over”....if only she knew.
I’ve never posted anything before, but came across this site and thought it might be useful to someone out there to know how well things can turn out. I know I’ve been pretty lucky, and maybe the future has some twists, but thats not on my radar, gotta live for today and bend in the wind when it comes.
Wishing everyone the best, good luck and great health!
Rod

Hi Valfo, which surgeron looked after you in AU???
Thank you!
Aneta