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I am 9yrs post takedown and still have issues more often than not. The repeat offender seems to be skin erosion in the anal area. I can see the broken skin myself, but my doctor(s) never do by the time they examine me. Even though I watch my food intake, I think it might be the root of my problem. Eating bulking food items in addition to fiber wafers still produces soft output. I have tried many creams and medications without much improvement. The worst part is that my doctor(s) are out of ideas and far from being proactive. They even ignore my requests for outside referrals... that brings me my first question.

1. Does anyone have/know a specialist that I can contact? I live in CA, but will travel for the right connection.

2. What is your daily regimen for bulkier output?

3. If you've had erosion issues, then what healing options were you given?

I assume a contributor to my issues is the many BM trips. I hoped my body would adjust after 9 years, but I guess it's still not used to the frequency. I did not have UC or any other bowel issues prior to my cancer diagnosis in 2008, so it was never a problem before.

Hope to get a better hold of all this soon!

Christian

 

 

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Christian,

Sorry to hear of your struggle & issues.

For me after 2.5 years of similar issues I by chance improved to less than 6Bms a day & none at night by eliminating lactose, at the same time I looked into low Fodmap foods & so eliminated Apple juice which was a staple for me. Worth a try if you haven't already done so. An easy way to access info on Fodmap foods & beverages is from an App by Monash University. 

Good luck

Paul

Paul H

Hello, Christian. 

I hope I can help you with food suggestions. The foods that helped me settle down from 12 -15 BMs after my takedown was soft cooked eggs, salted, on toast (no butter in the beginning, just plain, dry toast). The toast was easy on my insides, and the egg gave me protein and energy, vitamin B, and helped my tissues heal. Also organic peanut butter or almond butter on toast. White rice with baked or roasted chicken (no sauces, just salt and a bit of pepper -- but easy on the pepper in case it irritates). Steamed fish, and especially pasta. You could also try orzo if you tire of rice. I still stay away from grains, wild rice, seeds, nuts and anything that is insoluable. Insoluables don't break down in your digestive system, especially a shorter system that j pouchers have, so I could not eat vegetables unless they were peeled and cooked very soft, as if for a baby! Even now, raw vegetables cause pain and frequency.

I also drink a lot of bone broth, a bowl per day. It is easy to make bone broth (Google for instructions). Or buy cartons of organic chicken or vegetable broth. Bone broth, for me, is soothing, mineral rich, easy on my system, and - really important - it keeps me hydrated. I add chopped carrots to the broth and simmer until the carrots are soft. I add a few spoons of cooked rice that is always in my fridge. If you want to add spinach, chop it up, simmer it well in the broth so it wilts completely. A colourful, easy meal. In my cancer support group we learned to make soup-as-a-meal and you can make yours from all the things you like, even add chicken cooked in the microwave and add to the broth. Whisk an egg and add it to the simmering broth. Egg drop soup! It's a good, hearty, comforting, easy way to eat nutrient dense meals and keep hydrated. I keep mason jars of broth in my fridge, ready to go. If it's easier, you can buy cartons of organic chicken or vegetable broth for quick meals. Read the labels to avoid preservatives and MSG. I don't find the "salt free" cartons any good at all because without salt it is flavourless, and pouchers need salt. I try to stay on this plain, whole food diet and try to avoid processed food.  I am now at 5 or 6 BM in a 24 hour period. I also use raw, unpasteurized honey in my coffee and tea. No white sugar. When I fall off the wagon, I fall into a vat of french fries or fish and chips. 

After using Calmoseptine the first few months I found it was irritating on my broken, raw skin because of the menthol. It was too strong for me. My doctor recommended Zincofax, the brand used on babies for diaper rash. Now, whenever I have skin irritation because of occasional frequency, one application of Zincofax starts my skin healing within hours. I didn't believe it would work because it's a baby product, but it worked miracles for me. Babies' bottoms are always rash-y and painful because they always have wet or poopy diapers on their skin, so Zincofax has to work fast. I hope this is helpful and I hope you find relief. It is hard to have this after so many years, but please don't be discouraged. If your doctors can't give you referrals, look up some specialists in your area and give the name(s) to your doctor and ask them to send a referral to those names. They will see that you've done your own homework and are serious about having new opinions and help. They have to remember it's your health, and that you are the boss. Good luck.

Winterberry

Thank you for the replies!

Paul,

I also avoid lactose as it seems to be a trigger for most pouches. Thanks for suggesting Fodmap foods, I haven't heard about that one before. My nutritionist couldn't help me from the beginning, so its always been my own trial and error with different foods. I think the right diet will drastically reduce my issues once found... most meds go right through me. 

Winterberrry,

I follow a similar diet to yours except for the bone broth, that I haven't tried. Because my output is mostly soft I try to avoid extra fluids. I don't eat much soup for example. Calmoseptine didn't work for me either. I'm convinced that some of the creams keep the area too moist and it adds to the irritation. Ilex works occasionally, but not when my issues become long-term. I will look into Zincofax and give it a whirl. I came across this stuff called Triple Paste that is also for babies and it provided enough relief in the past. Unfortunately, Im not having the same success this round. Thanks for the tip!

tenaciousC

Bidet!!! Changed my life!!! Almost never have anal area skin issues any more, and I have a messed up sphincter to boot!!! 

I have a biobidet i3000-no electricity needed, $100. It more than paid for itself in just a couple months due to no more wipes, creams needed.

prior I had about a 4/10 pain in anal area all the time due to chronic anal tissue breakdown. I also find my continence is much better when the anal tissues are clean and healthy-before was a downward spiral of broken down/sore tissue, lead to worse function, more leakage, more sore skin/tissue, etc. With the bidet I swear it is like magic. I love to travel, but the best part is always coming home to my bidet-not kidding (travel bidet helps, but nothing beats the real thing!

J

Hi Christian have had my take down same time frame as you lots of troubles constant toilet trips skin breaking my husband brought me a bidet love it hate to leave home , found Sudocream which is Zinc oxide base really good carry small tube with me when I go out also have had great success with FODMAP the Monash app is really helpful when shoping I had a dietician help me through and explain how and why it works has greatly helped my problem lately has been blockages just has adhesion surgery two weeks ago hoping this will help all the best.   Susan 

S

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