I suffer significantly from slow transit constipation.
Today my surgeon informed me that he would like to totally remove my colon attaching the ileum to the rectum (subtotal colectomy with ileo-rectal anastomosis) and maybe (awaiting the outcome of one more test and responsiveness to physiotherapy) bypass the rectum entirely (stoma).
This is huge. I am only young and up until becoming very sick in June last year an avid sportsman. I wonder how this will change my life?
Researching the surgery I found this:
This particular surgery would spare the cecum. I know it is only a very small section of the colon, but it is still some right? Is it worth pushing my surgeon for this? From my readings at Evolutionary Psychiatry, Hunt Gather Love, PHD etc. it seems the colon is an enormously important organ and it would be wise to keep as much as I can. The study also links to psychiatric condtions appearing in those patients post-colectomy. Probably a gut flora thing. Worrying.
Also, I wonder how my diet may have to change post-surgery?
Kindest thanks to any response.
Thank you everyone for your responses, I'm absolutely blinded by the genuine warmth and help offered and the general spirit of the paleo community. I will try and exhaust all options before agreeing to colectomy. One option that was offered was sacral nerve stimulation. Unfortunately this is not covered by Medicare or my insurer and is quite pricey. (It is covered for faecal incontinence). My surgeon said it was hit or miss anyway. I am very interested in bacteriotherapy however $12-15k is not an option:
I will phone these guys regardless as I am Australian and it may be covered in some capacity but I doubt it. I do not know where else this type of treatment is performed?
Constipation has been kept under wraps from a young age with high grain fibre. I had an episode of bad constipation at 4 or 5 which led to metamucil. A bowl of weetbix and bran was sufficient daily to move my bowels. If I skipped this breakfast I would know. However it worked fine right up until June last year - I (more or less suddenly) became sick with abdominal pains and was having roughly 8 bowel movements of loose stool a day. Stool samples came back negative for the usual suspects. Colonoscopy came back clear apart from one or two polyps. Endoscopy showed esophagitis, unsymptomatic. GI told me 'eat more fibre (impossible I couldn't be eating enough at this stage) it is just IBS' and provided me with Nexium for the esophagitis.
I ditched fibre after reading gutsense and further research exposed me to to PaNu. I adopted this diet very strictly. 5-10% carb. Continued dairy after trialling no dairy for a while.
A new GI requested Lactulose breath test which came back negative for SIBO. MRI showed only constipation as did X-ray. At this stage I did not know I was constipated. I though I was fine as I was having regular stools, however impacted. I told my GI I had given up grains, he was shocked and requested I start eating them again immediately. I and the GI figured the constipation only arose out of my change in diet. He requested I take laxatives and everything should be fine. 'You're just constipated' This didn't explain the pain I was suffering before I was constipated or when laxatives had an effect. His lack of concern led me to a new GI.
This GI investigated the possibility of hirschsprung's at my request. Biopsies came back negative. This was after a colonic transit study showed 'significant colonic inertia' with 85% retention of 'test meal' after 72 hours, normal being less than 3%.
I moved to a more Perfect Health Diet around Christmas (20% carbs approx) which I continued until very recently. I have followed the protocols of various other paleo figures re: constipation. Nothing has made a shred of difference.
Laxatives lost their punch very quicky. Now I am entirely unresponsive to microlax enemas, movicol (miralax), dulcolax. I am having very limited effect with picoprep which is painful. Home administered water enemas are useless. I have had one colonic which helped but was painful and expensive. Because I cannot defecate, I have quit eating. I am now on water, bone broth, some rice and potatoes (very little), some fruit. Probably 350 cals a day total max. This is why the surgeon probably wants to operate sooner rather than later. I have quit work. Pain is worse some days more than others.
I had thyroid blood test done, which must have come back normal as I haven't heard anything. Multiple blood tests showed only high cholesterol (statins were talked about). Last monday I had an Rectoanal inhibitory reflex which suggested hirschsprung's. This was already ruled out but another biopsy will be taken next week - full thickness looking for short segment. My mother notes that my stool as a baby was always very small hard lumps. Before June last year, boxing and surfing was my life. I think about surfing every day.
Sorry for the info dump. I am grateful and thankful for all the responses so far.
This is beyond the scope of my knowledge, however I have a couple of cousins who have had their colon's removed due to ulcerative colitis and it really hasn't improved their quality of life due to continued complications.
Anecdotally from blogs and podcasts within the paleoshpere I have heard of people facing a colectomy correct their conditions via diet.
Having your colon removed should be an absolutely last resort, save your life, measure.
I highly recommend that you not only sort a second opinion on your condition but track down a paleo friendly doc and functional medical practitioner to work with to resolve your condition without resorting to irreversible surgery.
You could perhaps try the Paleo Physicians Network as a place to start looking.
Best of luck.
Try GAPS. You don't want to remove your intestines it's a life long sentence guaranteed to make you miserable, increase stress, and shorten your lifespan.
If you want to heal your large intestine than your going to have to commit to eating very easily digestible foods for at least several months.
I'm going to look like a nut job but about 3 months ago I used a fecal transplant and it cured 7 months of post-partum (heavy antibiotics from a failed induction and cesarean) constipation. Nothing else helped. I used my 100% breastfed infant's stools with the saline water from a fleet bottle and held it in for 6 hours. I just did it twice and since then any hint of constipation is easily managed with a little magnesium and/or coconut oil. It was amazing. Also I was drinking home made broth 2=3 times a day with meals and taking a good probiotic, but the real change was the transplant.
Perhaps you haven't exhausted every option you have yet.
See some comments here: http://www.medhelp.org/posts/Gastroenterology/Large-Intestine-Removal/show/316355
I would try alternative medicine before - orthomolecular and homeopathy. Those are untoxic and safe, and if those do not help, at least they wont harm you. If you didn't try it yet, go full paleo diet, withoug grains, gluten and other notorious intestinal chemicals.
I think its very important. Removing part of large intestines is probably similar in many ways to removing substantial amount of microbiota with antibiotics with obvious difference that fungal proliferation will not happen. There is big possibility for vitamin K and B deficiency so if you do it make sure you supplement it.
THere is possible post operative complication you should be aware of: Anastomotic Leak. This means that choice of surgeon is very important. Poor wound healing and infection are other cause and if you do it, make sure you start vitamin C megadose ASAP [talking about it, you may find vitamin C flush helpful].
== EDIT ==
Since no laxatives work for you, I think you should try vitamin C flush. After few tries you will learn about correct amount of C so that you don't finish with severe bathroom runs. Not eating is not going to help you. So lets see, finally, what do we have after everybody answered and you extended the info:
Probiotics. Since transplant is expensive and fiber didn't help I would go for some ultra quality ones and pop them like crazy. Watch for number of strains and number of bacteria in capsule. The more the better. I would suggest you to use huge number of them per day. Kefir, yogurt or other fermented stuff should help. If you could make your own kefir that is probably the best as kefir contains massive amount of fungal and bacterial probiotic cultures.
Drinks: Caffeine, green/black/white tea, water and rakia all help constipation. Drink lots of water, especially if you do vitamin C megadose.
You may be suffering from carbohydrate malabsorption (starch, sucrose etc..). If you didn't try it yet, test this possibility by removing fruits and starches and eating hi fat, moderate protein diet with vegetables and nuts as only source of carbs.
All those interventions shouldn't be expensive and supplements are non toxic and safe. Just be aware that you will be using therapeutical doses of some of them, information regarding healthy human supplementation is of no relevance to you. You cold get all of it for around $100 - $200 for several months.
I feel for you, especially so young - I am the same age. I think this is really a question of the least worst option. I guessed from you question that there would be a history behind this, surgery is usually a last ditch option.
Your colon is important for a range of normal functions.
However colonic inertia and really chronic constipation can be very serious. If it turns out in the end that surgery is the only option that can solve the problem then it may be better than doing nothing. I would treat it as the very last option, major abdominal surgery is big undertaking. I don't know how a post surgery diet would need to change.
If the muscles in your colon are not working, if you suspect hypoganglionosis, then most of the normal cures will probably have little effect as they still rely on your colonic muscles pushing the stuff out.
One idea though:
Fecal Transplant (also called Bacteriotherapy) is something I would think about trying before surgery if you can stomach the idea. It's not like you have anything to lose.
There is one mention in that paper of a case report of resolving chronic constipation. It usually involves cleaning out everything in you colon and replacing all the gut bacteria with new ones from a healthy donor. Usually under the supervision of a gastroenterologist, if you can find a helpful one. It is growing in interest for serious colonic infections and I noticed that you said that it began when you became sick with serious abdominal pain and diarrhea.
This blog Cooling Inflammation has a number of posts on the subject.
Sounds like an insane way to approach constipation. What do you actually eat in a day? What have you tried to remove? You avoid eggs, right? There is plenty of potential for constipation under the vast umbrella of "paleo." Have you tried a high fruit, high starch diet? I can't imagine a diet that consists of plenty of berries, sweet potato, white potato and rice resulting in constipation. Throw in a bit of meat and organs here and there and it's a perfectly healthy diet.
There simply has to be another option.
That's huge! I sure hope it works out for you!
In my family a condition pops up from time to time called Hirschsprung's Disease. It's a developmental issue where the very last bit of the fetus (when at the early fish state) doesn't quite weave the neural matrix all the way to the end. Later on this part becomes the colon. My father had it, and had part of his lower colon removed when he was 25. It skipped me but daughter had it and she had similar surgery when she was just two days old. I'm still astoundingly grateful that we - by luck of the draw - had a world-famous surgeon work on our daughter (we saw this guy on TV later, doing open-heart fetal surgery...)
Anyway, the primary symptom is extreme sluggishness - because of no nerves there is no peristalsis and stuff just backs up. My dad had to have almost daily enemas and eat a special diet for years until the operation. The surgery itself is very benign. My daughter was SO much better immediately. My dad went on a 20 mile bike ride the next day.
The lingering effect though is that it's difficult to control when stuff comes out, since there's a structure at the end that holds 'stuff' until it's potty time, and also lets us know we need to 'go'. And it's always a little messy. WAY better than a colostomy bag (one of our options) but it's something to live with and deal with forever.
I honestly can't say there are nutritional issues. My dad seems relatively healthy still in his 80's now, and my daughter is fine that way (if ONLY I could get her to eat liver!) In her case they took out about 2/3 of the descending colon - not the whole thing - I'd think that the more one took out the greater risk of problems later.
Not sure if any of this is relevant, but perhaps somewhat useful.
Oh - the way the surgery works is that they detach the colon at the anus, then pull it through taking biopsies every inch or two. They keep pulling until they find nerves then reattach. Maybe more info than y'all wanted, but we're all grown-ups here :-)
Robb Wolf talks frequently about how close he was to a bowel resection and how paleo reversed all the symptoms that were plaguing him. I don't know about you but I'm going to do my damnest to hold on to each every part that I evolved to have. I just don't see how living without a large intestine could be a good alternative to anything. Are you paleo now?
BTW, I've been reading a lot of material about Thyroid lately, and sluggish gut is a classic symptom of hypothyroidism. Whether or not your numbers are bad or good (and get the full panel, not just TSH) it sure wouldn't hurt to try a thyroid supplement for a little while. If you can convince your doctor, try something that contains T4 AND T3 (probably Armour) since you don't want to depend yet on your colon for its role in T4 -> T3 conversion.
It's worth a try and it's not permanent like surgery. Low risk high reward as they say.
I dont know where are you from, but I recommend considering with your doctor the use of a home-made fecal transplant. It is relatively easy to do, you just need healthy stools, a couple of commercial enema materials and a blender. You can adapt the protocol used here for treating Clostridium difficile:
From the symptoms you write, any dietary measure to modify gut flora seems to be useless.
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