Newbie

MelDR · Post by **MelDR** » Sun Mar 18, 2018 3:15 pm

Hi! I have been led to this forum through a friend, and would love some help to get started. My issues have been going for 10years + (Im now 31, mother of 3 little ones). Initially just IBS, but things have considerably worsened in the last 6 years. I have had two colonoscopies in the last 1.5 year, one of which showed colitis? I have had ongoing parasite infections for 4+ years. My large bowel has also become quite redundant, and has prolapsed following twin preg and delivery (and probably listening to professionals who said pack more fibre etc into rather than taking a softener during the pregnancy). The colorectal surgeon I am under wants to do a resection to improve my quality of life, but being as I am only 31, this is a scary thought!!
My symptoms are pain +++, bloat++, very slow transit due to bowel damage (hence now Im on a low-fibre, low-fat, easy to digest diet), insomnia, brain fog, significant weight loss as my body is malabsorbing..the usual :)
Where should I start?? I don't eat meat, just white fish (I was vegetarian up until recently but there is no way I could continue as it was making me sicker)
Do you think there is hope of managing my condition for the next few years to avoid surgery. Im hoping if I can settle the gut and pain, and work with the docs to find a med that works for me I can avoid surgery.
Thanks!

Post by **tex** » Sun Mar 18, 2018 6:26 pm

Hi Mel,

Welcome to the group. Slow transit is not a common problem among MC patients, but it does happen in a small percentage of cases. Your other symptoms are quite common with MC. It's good that your diet is low-fiber, as that's necessary to control MC. Not eating meat is a problem, because extra protein is needed to heal the intestines, and many/most of us are sensitive to soy. Being sensitive to soy puts most legumes off limits, but you may be able to get enough protein from fish.

We have to start by cutting out all gluten and all dairy products (if you don't already avoid them). That should stop the pain and bloating.

A resection is definitely no fun (I've had two), but sometimes they are necessary to deal with other issues. They are never necessary for treating MC.

Very low doses of amitriptyline (10 to 15 mg) can be used to regulate (speed up) motility. But never use a regular therapeutic dose (75 mg or more) because it quickly becomes very addictive at the higher doses.

Where there's a will there's a way, so surely you can develop a treatment plan that will control your symptoms without surgery. We'll help you fine tune your treatment program.

Again, welcome aboard, and please feel free to ask anything.

Tex

MelDR · Post by **MelDR** » Sun Mar 18, 2018 8:37 pm

Thanks Tex, any help is always appreciated.

Im not sure whether it can really be classed as slow transit (I have never had this problem before the twins thats for sure), as my bowel has been damaged and prolapsed it takes much longer for things to move through, and has lost peristalsis. However I still get constant churning, pain++ etc. I was until recently on endep, it definitely helped the pain but a doc said it can slow things down? I am so confused with doctors, dieticians etc.
I have been recommended to cut gluten, dairy (both of which are huge triggers), soy, corn etc out and go back to complete basics to see whether I can then identify triggers. I have had to cut all fruit out, however I think some vegetables (particularly the sweeter ones) and brown rice milk might be reacting. Bad stomach ache today after pumpkin and brown rice milk, is fructose/fructan intolerance common?

Post by **tex** » Sun Mar 18, 2018 9:32 pm

I'm not sure I agree with the doc who said that endep slows down motility. Amitriptyline works by prolonging the activity of serotonin and noradrenaline. It's normally used to regulate those neurotransmitters in the brain. But about 80 % of the body's seretonin is in the intestines. For most people, amitriptyline speeds up motility because increased seretonin activity stimulates motility. In fact, for many people, amitriptyline can trigger diarrhea. But it's also true that in the brain, at least, it can have a sedating effect. So it's certainly possible that it might slow down motility in some cases.

Yes, for many people who have MC, fructose is a problem. Fructose is more difficult to digest than sucrose/glucose, especially for MC patients. Here's a quote from my book on Pancreatic Cancer:

Insulin is produced in response to an increase in the blood glucose level, but an increase in the blood fructose level does not cause an insulin response (Ancira, n.d.)60 This results in a completely different way of handling fructose metabolization.

Fructose can only be metabolized by the liver, and the process requires the enzyme fructokinase. Insulin allows glucose to pass from the blood into the muscles where it can be immediately burned as fuel. But because fructose does not prompt the release of insulin, fructose will not have the opportunity to be transported to cells where it can be burned as fuel, and because of that important difference, fructose digestion tends to result in the formation of more fat deposits.

Here's reference 60 from that quote:

60. Ancira, K. (n.d.). What is the difference between sucrose, glucose & fructose? Healthy Eating [Web log message]. Retrieved from http://healthyeating.sfgate.com/differe ... -8704.html

When our intestines are inflamed, we aren't able to produce normal amounts of certain enzymes, so we are typically unable to produce enough fructokinase to properly digest very much fruit.

A few of us (not very many) are intolerant of rice. Most of us are intolerant of brown rice (because of all the fiber), but we can tolerate white rice just fine — it's the grain most likely to be well-tolerated.

I hope this is helpful.

Tex

MelDR · Post by **MelDR** » Mon Mar 19, 2018 3:38 am

Thanks! I certainly felt better on endep so I will start again.
I think my gut is just reacting to everything at present, and I am very suspicious of the other supps eg fish oil, zinc

It is just hard to know what to put into my body when it is in a flare, without making things worse.

Post by **tex** » Mon Mar 19, 2018 5:56 am

Exactly. It helps to keep a food/reaction journal where you record everything you ingest and when you ingest it and how you react to it because some adverse reactions occur within a few hours while others happen a day of so after eating. If the reactions occur within minutes after eating that would be due to a mast cell/histamine event.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Wed Mar 21, 2018 6:16 pm

Hi Mel
welcome

to expand on the responses from Tex, with the right eating plan, lifestyle changes etc i am fairly confident you can avoid surgery.

supplement wise - we encourage people to start out with just Vit D3 and Magnesium

keep in mind that healing takes time, weeks and months not days. at first, improvements are very small and barely noticeable and things tend to be 2 steps forward 1 step back -

we do have a guidelines to recovery section - you will note that animal protein is strongly encouraged. I am yet to see a MC patient stick with vegan/minimal meat eating successfully and attain good healing. (i have been active member of this forum for 8 years)

MelDR · Post by **MelDR** » Thu Mar 22, 2018 3:58 am

Thanks so much for your replies.
I am very much over being confused by doctors and dieticians re treatment and diets.
I have started the magnesium, already sleeping better :)

What would you recommend on a basic diet plan to get me started? I want to stick with fish/salmon as protein as Im not ready to go to animal yet. Fruits/veg? I have been used to eating heaps of these, unaware it was actually making things much worse.
Also are quinoa flakes generally tolerated as a breakfast? Also peanut butter? I think eggs may be out, I seem to bloat instantly

Gabes-Apg · Post by **Gabes-Apg** » Thu Mar 22, 2018 8:59 pm

link to suggested low inflammation gut healing eating plan
https://perskyfarms.com/phpBB2/viewtopic.php?t=22328

Post by **tex** » Thu Mar 22, 2018 9:22 pm

Mel,

For some reason or other, quite a few members seem to react to quinoa. Whether or not you can tolerate peanut butter usually depends on whether you can tolerate soy.

Tex

MelDR · Post by **MelDR** » Sat Mar 24, 2018 3:44 pm

Just one more question Tex (sorry to keep bothering you). I do believe I have severe magnesium deficiency (I have all the symptoms, and have been on a very restricted diet plus multiple meds, diarrhoea episodes followed by severe constipation etc). What dose of mag would you recommend for the next couple of months to pick things back up? I would love to give that a shot before I even consider going doing surgery path.
Thanks!

Post by **tex** » Sat Mar 24, 2018 8:17 pm

The RDA for women is about 320 mg, but to correct a deficiency requires more, especially when we're still having malabsorption problems due to MC. Too much magnesium can cause diarrhoea. The type of magnesium that's the least likely to cause diarrhoea is magnesium glycinate. Most members take Doctor's Best brand. It's 100 mg per tablet. Magnesium is an electrolyte so the body can only utilize moderate amounts anyway, and any excess amount absorbed must be removed from the blood by the kidneys (weak kidneys or too much magnesium can be hard on the kidneys) in order to to keep the blood level of magnesium within the normal range. And too much unabsorbed magnesium left in the intestines can cause diarrhoea. So a dose of about 400–500 mg daily, scattered throughout the day with meals usually works best. That should work fine, but if you feel that amount causes diarrhea, you can take less and use topical applications of magnesium oil or lotions, or foot soaks in Epsom salts, or even add Epsom salts to the bath water. Some members take twice that much, but not every one can tolerate that much. We're all differenct.

But the main point is to take it because it usually takes at least a few months to correct a magnesium deficiency. And magnesium is important for healing

Tex

Gabes-Apg · Post by **Gabes-Apg** » Sat Mar 24, 2018 11:40 pm

Mel
the Doctors Best Magnesium is cheapest via iHerb - I order most of my capsule/tablet based supps from iHerb, they are cheaper than any online or retail outlet based in Aus, delivery is within 5-7 days.

The best MC safe magnesium option that is on sale alot in Australia is the Ethical Nutrients Mega Magnesium tablets, chemist warehouse frequently have them discounted.

I personally use the magnesium lotion. Ancient minerals or NTS health hope this helps

MelDR · Post by **MelDR** » Sun Mar 25, 2018 3:59 am

Thankyou! Im suspicious on the vit D supp I have bought as it doesnt state its soy free (i think soy is a trigger for me)

Gabes-Apg · Post by **Gabes-Apg** » Tue Mar 27, 2018 1:39 pm

Mel
apologies for delay in replying, big weekend at car show/retro nostalgia fest!

in my Mc journey the only Vit D3 i have used is the bioceuticals lingual Vit D3 forte drops. absorbed lingually. 1000iu per drop.
larger chemists stock this - on bioceuticals website you can input your postcode and find local stockist.

hope this helps