Life befoer and after total colectomy due to colonic inertia

I haven't had the nerve for surgery so I am still taking laxatives nightly(9) and morning

I feel your pain. I am living exactly as you have. I have been suffering with constipation for many years. Now, nothing helps. It has been this way for 10 years or more. I have also been on zelnorm, amitiza, linzess, lactulose, miralax, etc. I have to digitally remove my fecal matter, and it is not necessarily hard. I have been recently told I have colonic inertia and need a total colectomy. I am a belly dancer(and a nurse, also). I do not want scars. I have a bleeding disorder, which wll complicate the surgery. I am scared to death, and I do not want a colostomy or scars. My surgeon says she is going to do it laproscopically. I cannot eat without pain. My life is centered around my "bathroom problem." I cannot take living like this anymore. I am scared, though.

Thank you. I'm about to have this done myself. I've assisted from this since I was born and it took me 20+ yeasts also to find a dr that took me serious

I did try this form of treatment as a last resort before considering surgery; at guidance of my physician, I used multiple pharmacological agents in the antidepressant and antipsychotic drug classes. All were all unsuccessful and as the side effects of these types of medications include weight gain and drowsiness, my only outcomes were residual tiredness and gaining 20 lbs.

Just now Came across this page while browsing so I'm not sure how current the posts are since many date back several years, but wanted to commiserate with the like-minded, lol.  I had a Total Colectomy 1 1/2 years ago for chronic constipation.  I had a great surgeon & no complications.  I no longer suffer from constipation, but I do struggle with feeling dehydrated.  I drink tons of water, but still get dehydrated.   The main food I should avoid is dairy, if I eat it, cave in for an ice-cream craving, I pay for it with diahrea--which is not a big deal except I get dehydrated easily & that is a big deal.  I recently was diagnosed by a cardiologist as having a form of Autonomic Dysfunction that also includes POTS syndrome symptoms.  The POTS symptoms are made worse by dehydration (blood pressure drops, heart races & can become arrhythmic).  These days I find it hard to get through a shower without sitting down being short of breath.  I never had such issues with feeling weak & so fatigued before the Colectomy.  I just want to mention those with Autonomic dysfuction will generally have severe constipation, maybe dry eyes, fatigue & symptoms that doctors don't think to correlate with an autonomic dysorder.  Typically patients see doctors for years complaining & eventually sent to a gastro-interologist before ever making it on to a cardiologist.  I only found out I had the autonomic dysfunction cuz the cardiologist did a Tilt Table Test & diagnosed it.  No other test show anything wrong with my heart or with me.  It's possible tgen that many of those suffering from severe constipation have autonomic dysfunction & don't know it.  Google it if your curious & don't rule it out--if that's the cause of your constipation--check into treating that before having a Colectomy--you never know

I related very much to your story although I have had the several complications you had after your colectomy. I had a colectomy 2 weeks ago and all is going well except I still have a lot of bloating in my belly and legs. I've heard the same thing about it dissipating but how long does this take? I'm sick of feeling so sore and uncomfortable because of the bloating. what happened with you regarding the bloating? thanks for the positive attitude you seem to have. sara

I don't remember being bloated myself. But I did feel cramps in my small intestine on & off for quite a few months. For me cramps had to due with gas, which eating seemed to contributed to that. That went away as my small intestine adjusted. 1.5 years later & I find I need to eat smaller portions, I get full faster at one sitting, & if I do eat very large portions at once I feel ill. Personally I think that my small intestine motility has slowed down & that can cause issues if eating too much at once. I did read a study that having a total Colectomy can be a factor in causing the small intestine motility to slow.

Anyone with severe chronic constipation should get tested to see if they have any form of Autonomic Dysfunction. Most people who have it in some manner never get tested or know, & a primary symptom is severe constipation.

Hi Jenn!
Thanks for this post. I know this was almost a year ago so I hope I'm not too late to the party. I just had a total colectomy done on in mid December (just under two months ago). My symptoms and experiences (especially with doctors) were almost identical to yours. I am completely on the same page with you that even though I have had some serious ups and downs since my surgery, it is by far one of the best choice I've made. Finding out my condition was real--that there was truly something wrong and I wasn't just "being a baby"--was a huge sigh of relief. I felt validated.
Since surgery, my recovery has been good and bad. I am a 21 y/o girl in relatively healthy condition. At first, I was recovering quite quickly--I was able to move around and even go on runs sometimes. I felt normal. So normal actually, that I decided to go to a hot yoga class. It was stupid--I ripped open my incision (mine was laparoscopically removed through my belly button) from all of the stretching. This created an external infection that was followed by pussing and other gross things. Since that point, I've experienced intense feelings of acid in my stomach. For the past week, I've had whats felt like a knot or a cramp on the right side of my stomach. I don't know if it was caused by the external rip of what, but its just been a nonstop series of different problems that my doctor can't explain.
Sorry if all of this is way too much information haha, but like you mentioned, one experience I've had is feeling like I'm going through this alone. None of my family and friends know what to do and I do feel like having colonic inertia and getting this procedure seems to be quite rare.
What I'm curious is, given that you are now a year out of surgery, what was the full span of your recovery like? Do you think these different examples of intense cramping and acid and buildup is normal or worrisome? Any thoughts or advice would be great. Again, thank you for sharing your story--it's really nice to know other people have gone through this too.
Best,
Rachel

Hello. I absolutely have experienced most of what you have experienced as a result of doctors not listening. In a nut shell, I suffered with severe constipation for over 15 years I finally contacted Mayo Clinic, and Dr Camgemi listened Wow!!! I had 5 ft removed because of colonic inertia. That was over 10 yrs ago Exercise helps to keep my colon more active, because in time I started feeling sluggish again However, prior to the surgery, I could barely take care my children from nausea, weakness and severe constipation. So I have to eat several times a day, healthy small meals if I expect to feel not so full and sluggish, buy again, this is 10 years later. Take care, one day more illness Isaiah 33:24

Hi, I also live in Australia and am thinking about this surgery. Do you live in Brisbane by any chance? If so I'd be intertested to know who your surgeon was. many thanks

Hi Valero, I am considering this surgery also and I live in Australia also, in Adelaide. Were you happy with your surgeon, where I. Oz did you have the op??

I`m crying as I read your post. I know is almost 5 years old but I can relate to everything you wrote. I started suffering colon inertia when I was 15 years old. Thank god I found MY doctor a year ago and he explained to me that the only solution was surgery. I had the operation two weeks ago and also had two blood transfusions because of the bleeding. Right now I'm recovering in my house and trying to figure out my ideal diet.

I had a total colectomy 22 years ago for the same reason as yourself. I have suffered with diarrhea since. After years of trial and error and help from sites like this one I have it pretty well under control. Be very careful with the food you eat, if I have a 'bad' day I can relate it back to something I have eaten and don't forget to drink water. Foods to avoid are spices, fats, nuts, cereals, salads, cabbage, I could go on but it is easiest to say what you can eat. Always have 3 meals a day just a sandwich is fine for lunch but a good evening meal. Something a bit stodgy like potatoes,pasta, be careful with greens and make sure your vegies are well cooked not crunchy. Meats but not fatty are necessary, also I find most fruits upset me but bananas are fine and now and then an apple. I spoil myself each fruit season and have 1 piece of stone fruit of each variety so I don't feel so deprived. A lot of chocolate also upsets me, it is the fats in it. Try things and work out what you can and can't tolerate.
Also, it sounds like you don't like medicines BUT I take 4 Imodium capsules a day (2 morning & 2 night) plus 2 sachets of Questran Lite (1 morning 1 night) the Questran has been an absolute bonus in helping. Make sure you don't take it for at least an hour (I leave longer) before or after other medication as it absorbs it. By the way I have taken 8 Imodium to go to a special function and no way did it constipate me, don't forget to drink water.
In Australia the doctor requires a Government Authority to prescribe the quantity on each prescription for Imodium and then it is much cheaper as well. After years of not wanting to leave the house I have found that all of this has been a great benefit.
Correct food is the most important thing to help to control the problem
GW Australia

i had a subtotal colectomy about 15 years ago, then my other half of my large intestine got infected and that was removed. I was born with a hernia and have had 4 hernia surgeries after that. 2 hiatal, 2 others. I had a bie duct tumor. I used to be so happy and upbeat. Now, it;s hard to make plans with my friends because I don't know if i am going to have a good day or bad day. I am in so much pain. any recommendations? i am dying here.