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Right sided hemicolectomy

 
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tooolgrl



Joined: 03 May 2009

Posts: 11
User's local time:
2017 Oct 21 - 12:41 AM


Food Intolerances : Gluten
Location: Maine

PostPosted: Mon Sep 18, 2017 4:03 am    Post subject: Right sided hemicolectomy Reply with quote

I had a right sided hemicolectomy with ileocecal valve, appendix and a portion of my terminal ileum removed in 2013 due to a perforated colon during a colonoscopy. I was diagnosed with CC back in 2005 after a year of diarrhea. Off and on flare ups between 2005 and 2013. Fast forward to 2013, flare up for months. GI doc was in a huge rush due to being 2 hours behind. Procedure was horrible and during it he perfed my colon. Doc sent me home, I ended up in the ER in sepsis 2 days later and rushed into surgery that evening. The surgeon told me later on that I could have diarrhea the rest of my life due to what she had to remove. I have been seeing a GI doc (NOT the one who perfed my colon), have been on every single medication out there, every diet and still I have 10-20 episodes of watery diarrhea daily. If anyone out here has any thoughts, suggestions, words of wisdom I would love to hear. Could this all be due to my not having an ileocecal valve anymore? My GI never discusses this, feels like he has forgotten all of my history and just shakes his head. I feel like this is my life now and I should just get over it. I work for a veterinary hospital and thankfully they understand my issue with me running to the potty all day long!! Thank you, Sandra
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tex
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Joined: 24 May 2005

Posts: 30593
User's local time:
2017 Oct 21 - 12:41 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Mon Sep 18, 2017 9:50 am    Post subject: Reply with quote

Sandra,

I have some insight on this because I had a colectomy due to emergency resection of my sigmoid colon back in 2005 (due to a blockage caused by a stenosis resulting from diverticulosis/diverticulitis). This was replaced by an ileostomy in 2010 (because of a massive colonic bleeding event apparently associated with a genetic defect). Anyway, they removed my colon, the cecum, (and my appendix of course), and part of my terminal ileum. I've been wearing a pouch for over 11 years now altogether, 7 years since the ileostomy.

I can verify by personal experience that a complete colectomy will not stop MC reactions to food sensitivities. MC is a disease of the entire digestive tract, not just the colon, as it was originally mistakenly described in the medical literature. I am just as sensitive to certain (many) foods as I was before the procedure. The consistency of my output into the pouch depends on my diet, obviously. If I accidentally ingest a food sensitivity, or too much sugar, etc., I have watery diarrhea. If I drink more liquids than my digestive system needs for smooth performance, I have watery diarrhea. I have no control otherwise over my ostomy. Whenever it decides to output, it does. My turnaround time is approximately 910 hours, depending on diet. Originally, I had a normal turnaround time (about 24-30 hours).

But if I carefully control what I eat and drink, the output has the consistency of thick paste. So clearly my ileum has "learned" to extract/recycle some of the water if I don't overwhelm it with the amount of water I drink. But dehydration is a constant threat with an ileostomy (because most of the water recovery is by the colon). So I have to be sure to drink enough water to allow for the loss. If I am careful with my diet though, I can sometimes get by with 2 pouch changes per day, though normally it takes 3. Initially (right after the surgery) before my system had time to adapt, It took 5 or 6 or more changes per day to handle the output.

My impression is that the ileocecal valve is only (or at least mostly) there as a check valve to prevent backflow of the colon contents into the small intestine. But I can see how if your remaining section of colon was reconnected to the ileum without a valve, the unregulated mixing of contents could prevent the remaining section of colon from being able to reliably control the water content of the mixture.

That said, with careful control of what and when you eat and drink, you might be able to reduce the episodes of watery diarrhea somewhat, but I kind of doubt that you would ever be able to have "Normans" without an ileocecal valve. But that's just my strictly unprofessional opinion.

Thanks for posting. I was wondering why no one had ever posted to report a perforation during a colonoscopy. I consider all types of endoscopy to be risky procedures, despite the relatively low prevalence of adverse events. I wonder if they are actually all reported, and if they are, does anyone actually closely monitor the statistics.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Polly
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Joined: 25 May 2005

Posts: 5161
User's local time:
2017 Oct 21 - 1:41 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Mon Sep 18, 2017 10:14 am    Post subject: Reply with quote

Hi Sandra,

How about a trial of cholestyramine, a bile binder?

Polly
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tooolgrl



Joined: 03 May 2009

Posts: 11
User's local time:
2017 Oct 21 - 12:41 AM


Food Intolerances : Gluten
Location: Maine

PostPosted: Mon Sep 18, 2017 10:43 am    Post subject: Reply with quote

Thank you both for your replies. I have tried all kinds of medications throughout the years. Bile salt binders, steroids, antibiotics, you name it I have probably been on it. Nothing has helped. I had an ileostomy as well for several months following my hemicolectomy. I developed abscesses which caused blockages which in turn caused more emergency surgeries. Right now I am back doing my bland diet, but no matter what I eat it basically goes in and comes out a short time later. I try to make sure what I eat and drink will keep me nutritionally sound. At this point I am taking a break from my GI doctor, I don't feel that he can do anything more for me. The only remission I ever got was when I went gluten free, I had a few months of near normal stool. But it was short lived. I am still GF, and do not eat any processed foods. My bowel is in pain most of the time, I do have Bentyl and Levsin for that. Sometimes it works, sometimes it does not. I now believe what my surgeon said to be true, that I may always have diarrhea, due to what was removed. Thank you again for your kind words.

Sandra
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tex
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Joined: 24 May 2005

Posts: 30593
User's local time:
2017 Oct 21 - 12:41 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Mon Sep 18, 2017 11:16 am    Post subject: Reply with quote

Sandra wrote:
The only remission I ever got was when I went gluten free, I had a few months of near normal stool. But it was short lived.


OK. That tells me that your gut is certainly capable of performing normally (or close enough for all practical purposes). This scenario (a short period of normal or near-normal bowel movements) is typical of people who eliminate gluten from their diet, but still have one or more food sensitivities that remain in their diet. As soon as the anti-gliadin antibody level from the gluten declines to below a certain threshold level, the immune system begins to look for other food antigens and then it begins to trigger a reaction again when it finds them. As long as the anti-gliadin antibody level is high, the immune system focuses on gluten and sort of ignores other food sensitivities. The remission typically lasts 3 or 4 weeks, but this can vary, obviously.

Therefore, in my opinion, you have an undiscovered food, drug, or other antigen in your environment (it could even be chronic stress) that is continuing to cause your diarrhea.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Polly
Moderator
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Joined: 25 May 2005

Posts: 5161
User's local time:
2017 Oct 21 - 1:41 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Mon Sep 18, 2017 11:39 am    Post subject: Reply with quote

Sandra,

You have really been through the wringer, it seems. No fun at all.

I don't mean to beat the dead horse, but I am still wondering about the bile salt binder (mainly because it gave me my life back after many years of MC without optimal control despite a very strict and limited diet). Did you try it after your hemicolectomy? Your bile salt malabsorption is known as type I (which occurs after a known insult to the ileum, like a resection). I have type II, which means there is no obvious abnormality to explain the problem (although some researchers found that up to 60% of those with MC may have an associated bile acid diarrhea). I do realize that the bile salt binders may be less effective in type I than in type II, but it may be worth another trial.

The reason I say this is because I have learned some things about cholestyramine from experience that you won't read about when researching it. For example, it may take weeks to begin seeing noticeable results (by this I mean even more than 4 weeks). Also, you may need to start with a higher dose than most docs recommend.....say 2 or 3 packs at least twice a day. Then it needs to be titrated back gradually when you begin to see signs of constipation (I know, what is that...right? lol). Also, I have found that I can only use the regular cholestyramine (I react to any phony sugar, like in the "lite" version) and it HAS to be the Sandoz brand generic prep. The PAR brand did not work for me and undid progress I had made with the Sandoz brand.

Cholestyramine is a VERY safe (and inexpensive) med and is not absorbed systemically. The only drawback you will read about is potential damage to teeth because of the sugar in it, but this is an overreaction, IMHO. There is no more sugar than in a candy bar (less even). I think there was one case of someone whose teeth decayed because they didn't brush/swish after taking it, so that keeps getting blown out of proportion. Also, the issue of poor absorption of fat-soluble vitamins (A,D,E,K) is an over-reaction, too, IMHO. Yes, it is a potential issue, but there you can't find real examples of this online, for the most part. This issue can be mimimalized by the timing used when taking the binder.

In addition to bile salts, I'm sure you know that the terminal ileum is where vitamin B-12 is absorbed. Just mentioning it to make sure you are using a sublingual B-12 supplement or injections.

Polly
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Gabes-Apg
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Joined: 21 Dec 2009

Posts: 7132
User's local time:
2017 Oct 21 - 4:41 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Mon Sep 18, 2017 5:48 pm    Post subject: Reply with quote

In line with Polly's and Tex's reply
in my 7 years of reading and being part of this forum, All medication options for MC have a limited scope of success based on the following two key areas;

- diet and lifestyle with high level of inflammatory triggers
- deficiency with Vit D3 and magnesium - and active B vitamins

making the eating plan and lifestyle changes as suggested (encouraged) here along with fixing key nutrient deficiencies will allow the medication to work to its optimum and give you wellness again.

hope this helps
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"Anything that contradicts experience and logic should be abandoned"
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tooolgrl



Joined: 03 May 2009

Posts: 11
User's local time:
2017 Oct 21 - 12:41 AM


Food Intolerances : Gluten
Location: Maine

PostPosted: Tue Sep 19, 2017 10:54 am    Post subject: Reply with quote

Thank you everyone. I take 5000mcg B12 SL daily. I also take 500mg of Magnesium.
I am not sure if this is the correct dose for magnesium or not. I also take D3 supplement, not sure of the strength, may be 2000. If you guys have any other suggestions for supplements I'm open to hearing. I also have fibromyalgia, and take gabapentin and baclofen for that. Due to bad scar pain I also take Tylenol 3. I'm on the hot mess express guys!!! But as long as I can keep moving I'll keep moving!! Thanks again,

Sandra
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Imperfection is beauty, madness is genius. It's better to be absolutely ridiculous than to be absolutely boring :D
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Gabes-Apg
Emperor Penguin
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Joined: 21 Dec 2009

Posts: 7132
User's local time:
2017 Oct 21 - 4:41 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Tue Sep 19, 2017 3:21 pm    Post subject: Reply with quote

Sandra
with the 500mg of magnesium, what type of magnesium is it? also check the small print in the dosage area on the magnesium product, and check what the 'elemental magnesium' dosage is, and how many tablets/capsules is required for that dose.

the daily minimum for magnesium is 350-400mg ELEMENTAL magnesium
if you are deficient, you may need 600mg per day for a couple of months to correct the deficiency.

re the Vit D3, best way to confirm dosage is to have your Vit D3 level checked.
if it is low, you may need 5000iu per day (or more)

the other supplement that many benefit from is B6 - via the active form of P5P.
there is a great product that has the active forms of B6, B9, B12 Thorne Methyl Guard Plus.
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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tex
Site Admin
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Joined: 24 May 2005

Posts: 30593
User's local time:
2017 Oct 21 - 12:41 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Tue Sep 19, 2017 4:47 pm    Post subject: Reply with quote

Sandra,

Can you get your zinc and copper levels tested? This can be done by a blood test or you can get a hair test that will check the ratio. I suspect that some long-term cases that fail to reach remission are due to methylation issues that result in a zinc/copper imbalance due to a copper buildup. A zinc/copper imbalance can play havoc with the digestive system.

Do You Have A Copper and Zinc Imbalance?

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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tooolgrl



Joined: 03 May 2009

Posts: 11
User's local time:
2017 Oct 21 - 12:41 AM


Food Intolerances : Gluten
Location: Maine

PostPosted: Sun Sep 24, 2017 5:40 am    Post subject: Reply with quote

Thank you all so much for the replies. The funny thing is, ever since my resection I have tested negative for MC. I mean, of course where the biopsies are taken could be the reason for that. So since then my GI really isn't too keen on treating me for MC, not that any of the medications helped. He is now just focused on treating me for IBS, SIBO. Which none of those meds worked either. I am sure my primary care provider would be open to testing for zinc/copper levels. I will certainly look into that. How much B6 per day is recommended? I do have some of that here. I am so appreciative of all of your input, it is very helpful. Doctors are all so frustrating.

Sandra
_________________
Imperfection is beauty, madness is genius. It's better to be absolutely ridiculous than to be absolutely boring :D
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30593
User's local time:
2017 Oct 21 - 12:41 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sun Sep 24, 2017 8:21 am    Post subject: Reply with quote

Sandra,

I take Thorne Laboratories Methyl-Guard Plus. One capsule per day. That way the main B vitamins remain balanced (B-6, B-9, and B-12). Or you can take regular Methyl-Guard and get about half as much of each vitamin.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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