Your posts are helpful and hopeful

I know LS is supposed to be a rare disease, not much research, so there's nothing to treat it with except cortisone which has a bad rap of its own.

I'm in Ontario, Canada, which is a very large province with only two dermatologists that treat LS, and both are about to retire! Mine is handing off to gynecologists, but really the level of knowledge is kind of pathetic. I'm happy I have an excellent alternative practitioner who's a GP and a homeopath, who's done some good research on LS of his own, who trusts my research and my sense of my own body. He encourages me to experiment. He says we live with LS 24/7; we know more about it than anybody. Well, yeah.....

I'm lucky not to have internal itch. When I get external itch, soaking in warm water twice a day (I fill a plastic tub in my bathtub) is soothing. I listen to mindfulness meditation tapes while I'm doing this....can't believe I'm saying this online........whatever works! In between soaks if I need it, it was recommended I use coconut oil. You need to wait for the effect sometimes. It might get itchier for a minute or two but then the itch goes away. You can  use as much of that as you like. It's neutral, apparently.

Digestive enzymes. Products may be different where you are, but AOR brand works for me. I've found not to buy the cheapest brand - middle of the road usually works. One before breakfast and snacks, two before lunch and dinner, more if it's a heavy meal, but that's me. A nutritionist might know better for you. Alkaline water I get from my well! But maybe you can rent those stand-up cannisters where you are. At least try for no chlorine, even if it's not alkaline. I drink at least three litres a day. Clear tea, coffee, lemonade don't count. Lots of good water clears the system according to my good doctor.

The latest fibre I've taken is ground flax seed. I read somewhere on line that that's one of the healthiest things you can take for your gut. 

Mainstream vs alternative doctors. Yikes! What a story. Mainstream doctors in this country get minimal training in diet. About 3 months after I went on my restricted diet, I went to the dentist. The hygienist looked in my mouth (I'd had bleeding gums) and said, Wow. What are you doing differently? Your tissues are so much healthier looking! So I told him. He actually called in the dentist to have a look. Diet!! I figure vulvar tissue can't be that much different from mouth tissue. Meanwhile, the gynecologists at Women's College (mainstream doctors at the most prestigious women's hospital in Ontario) poo-pooh diet completely. It gives me such a head-ache!!!!

I can tell you a happy story around gut. In 2004 I had my first colonoscopy - no polyps but I did have diverticulosis. In 2014 I had another procedure. No polyps or diverticulosis. I went online and found they treat diverticulosis with antibiotics but I haven't taken any in ten years! So I put my faith in food - best drug around.

I will check out the Yahoo group. Thanks for that.

Great to meet up with you.

All the best!

Onwards to healing forever from LS!

I'll respond to your message interspersed in italics:

giving up dairy was good for asthma sufferers

dairy causes inflammation and mucus, according to all the natural health gurus I've ever explored in magazines, online, on TV.... 

I went back to my GP and told him of my findings and all he could say was 'oh really'.

This business with GPs is so distressing. They have nothing to offer us except drugs if we reach the stage of major disease, and yet they have no problem running down proactive practises offered by "alternative" practitioners that actually work!! That's a major problem if their job is to help patients and "cause no harm".

So here we are,  I am lactose intollerant, can't eat yeast products or spices.  I am predisposed to alergies such as hayfever and asthma, and have a history of psoriosis, thrush and UTIs.  

....and you found that all out by yourself with less than no help from the mainstream medical profession. Sorry to go on and on, but being 66 and having survived the system, I happen to know they've earned the cynicism. Imo what they need to do is incorporate *alternative* practices, not fight them - for the good of their patients.

My Mom said I was born with a cold (Dec 21 - right in season!), I always had allergies, and I had asthma as a child but "grew out of it" - (hah! )As an adult, dairy allergy/sensitivity eventually caused awful gas problems of the horribly stinky variety, and I expect excess gas was the source of my diverticulitis because gas would expand the bowels and cause splits where there was inflammation.....I know my Mom didn't go through any of this, so there wasn't a genetic component in this for me.

You're so right about sharing this info. Going to a doctor as one person and saying, "This is my experience" is one thing. Going in with a ream of similar testimonials from other LS sufferers is another. If they're so inclined, maybe they can use our info to find a cure for this nasty condition.

So thanks for tying all these thoughts together. Brilliant! 

I find these posts quite alarming in that we all seem to be LS sufferers but more noticeable, we seem to have same or similar other medical problems.

I have been reporting bowel problems for years, have had 3 colonscopies, 1 sigmoidoscopy, the only finding was Diverticulosos, no treatment offered. My mother had Diverticulitis, not sure what the difference is but was told Diverticulitis is more serious. Obvious there is some genetic link.

I also have chronic Sinusitis and have to use multiple sprays which dont help that much. With Sinusitis you have so much build up of mucous that it affects my voice and are forever trying to clear my throat to no avail.  Dairy just makes the mucous so much worse, ive since swapped to lactose freemilk, zymill brand. Helps somewhat but still with bowel issues continue to have constant gas and bloating problems and passing bowel movements has become probmatic .  

How can LS sufferers have any sort of nornal sex life with all these associated  conditions as well.

 I now get regular bloods taken also to test my ESR that shows any inflammation occuring in the body. Normal ESR is between 0-20, mine is 70 and even though i report chronic inflammation in the buttochs; nothing gets explored further.

Always acidic, UTIs, symptoms of thrush, bowel issues, stomach issues, this damn LS which is auto immune condition, disease and ongoing Psoriasis of the scalp all drive me crazy, another auto immune condition perhaps?  

So apart ftom treating my LS with steroids now having to use daily Elocon lotion which is also a steroid on the crown of my scalp daily.

Skin conditions/diseases, doctors need to be more aware of people with auto immune conditions.

terrible conditions we have where no cure currently exists just temporary management, hopefully things will change. I am now under a specialist in womens health and she is female.

Bye

This is wonderful news that you have been listened to.  I have a follow up appointment with my GP tomorrow and will do the same and report back here.  Where are you both from? I am in Bedfordshire England. It will be interesting to see how this is recieved by the medical profession across England and the globe .  knowing we have found this link is making me feel much more positive for a good outcome of at least keeping this under control and being able to deal with flare ups.  thank you all on here for sharing 

good luck with your new female specialist 

I am not sure what ESR means in medical terms but it would be easy to find out online.

ESR blood test shows your doctor whether you have any inflammation in your body that is out of the normal range.

ESR test does NOT indicate to your doctor where the inflammation is only that it is occuring. This would be up to your treating doctor to investigate further.

With me i know where the inflammation is because i can feel it all the time, uncomfortable. I would say in my case that its related to certain food intolerances as have IBS also or i have inflammatory bowel disease.

The standard blood test does not include ESR test but you can request that it be included.

In Australia you can get swab tester kits at the pharmacy to do yourself. I wpuld imagine that you could purchase them online also.  These kits come with a colour code strip like pool test strips and it tells ypu whether your too acidic, or alkaline and usually shows you the normal area.

from memory think there was information about what to do if too acidic.  There are certain types of foods you can eat to change the environment to stop certain infections from thriving.

I hear you about suspenders being uncomfortable to sit in. However - you reminded me of something that might help women heading outdoors into cold climates like Canada, which is where I live. I found someone who knits wonderful socks and she measured me up for some that are full  (nylon) length. I had to modify a garter belt to take the socks, which are obviously thicker than nylons. The modification involved changing the hang-down elastics to ones that had vertical slits in them (available at fabric stores). Then my knitter friend attached buttons to the tops of the black stockings. Bright pink, yellow and green!! They're gorgeous, and they let me skate, snowshoe, etc, in style, if buttons nobody but me can see are stylish..... I suppose if I took a fall.....anyway, I love them.

My alternative practitioner used live cell microscopy to figure out what my food sensitivities were, and once he found them and I started cutting out the bad stuff, I started to feel positive changes in my body within a couple of weeks. As I mentioned in an earlier message, my dental hygienist was amazed at the improved condition of the tissues when he looked in my mouth about three months after I started on my 'special diet'.  

When my doctor diagnosed that my body was acidic, he put me on an alkaline diet. With systemic acidity, you don't have much energy, so whenever I used the urine test strips to see how I was doing, I pretty much knew ahead of time what the reading would be. If I was on target, I had energy; if I was acidic, I didn't. Easy!! 

Christmas 2013, I overdid sweets, even though sugar, especially the processed stuff, isn't on my diet.  The effect on my LS was - flare-up!! It took me several months of minimal sugar before that started to recede.

The moral of all these stories for my particular body is that health / inflammation control is all about diet and maintenance. I drink 3 litres of chlorine-free water a day to flush out the bad stuff, make sure I get plenty of rest and exercise, and - touch wood - my LS isn't too bad.

Good luck to you!!

I'll respond to your message, interspersed.

I have been reporting bowel problems for years, have had 3 colonscopies, 1 sigmoidoscopy, the only finding was Diverticulosos, no treatment offered. My mother had Diverticulitis, not sure what the difference is but was told Diverticulitis is more serious. Obvious there is some genetic link.

Likely a food link too. If somebody has reactions to certain foods, the result would be bowel inflammation and inflammation compromises immunity elsewhere.

I also have chronic Sinusitis and have to use multiple sprays which dont help that much. With Sinusitis you have so much build up of mucous that it affects my voice and are forever trying to clear my throat to no avail.  Dairy just makes the mucous so much worse, ive since swapped to lactose freemilk, zymill brand. Helps somewhat but still with bowel issues continue to have constant gas and bloating problems and passing bowel movements has become probmatic .  

Dairy is notorious for making mucous, which compromises immunity too.

How can LS sufferers have any sort of nornal sex life with all these associated  conditions as well.

 I now get regular bloods taken also to test my ESR that shows any inflammation occuring in the body. Normal ESR is between 0-20, mine is 70 and even though i report chronic inflammation in the buttochs; nothing gets explored further.

I don't know about your country, but in our country, mainstream doctors know zip about food and how it can create inflammation in your body if you're sensitive or allergic to certain foods. If you can't find an alternative practitioner who knows about food, you can do your own work to find out what affects  you adversely. For instance, stop eating bread for awhile and see if you start feeling better. Same for sugar, but delete one at a time. And if dairy is a problem, try almond milk instead. 

Always acidic, UTIs, symptoms of thrush, bowel issues, stomach issues, this damn LS which is auto immune condition, disease and ongoing Psoriasis of the scalp all drive me crazy, another auto immune condition perhaps?  

Try googling alkaline diets on the net. You can buy urine test strips at a drug store to test whether your acidity is systemic. If it is and you go on an alkaline diet and take alkaline pills (I think the ones I took were called Alkala) you can bring that acidity under control within a few months. 

Doing all this stuff won't make the LS go away, but it will bring the LS 'flare-ups' under control, which are basically just one more inflammation!

So apart ftom treating my LS with steroids now having to use daily Elocon lotion which is also a steroid on the crown of my scalp daily.

Skin conditions/diseases, doctors need to be more aware of people with auto immune conditions.

terrible conditions we have where no cure currently exists just temporary management, hopefully things will change. I am now under a specialist in womens health and she is female.

Is your doctor an alternative practitioner  or a nutritionist - somebody who knows about food, and how it affects your body? If not, try looking around and see if you can find a good one. My local health food store owner told me the name I needed. If you live in a rural area, you can test yourself by withdrawing certain foods one at a time. The ones that tend to cause problems are dairy, wheat, sugar, flour, in that order. The best foods are whole foods, not processed foods. The trouble with 'processed' foods such as flour is that they go into your bloodstream like sugar.

For me it's been all about diet. Changing diet away from foods that aggravate your body can be a long-term challenge, but for me it was worth the effort!

Over time I've figured out some really good whole foods that I love that are dangerously healthy, so I don't feel deprived. My biggest thing was giving up chocolate treats, but cacao is actually a superfood if you don't cook it, so now I make my own chocolate treats, using organic cacao and stevia as the sweetener. They're sweets, but I could eat them for lunch they're so good for me. Lots of sites for raw foods and whole foods online.

This is just my take, Sarah. Changing my diet has helped me a lot - LS, low energy, mind fog - lots of things got better when I modified my intake.

Best of luck whatever direction you take.

Andrea

Goodness our messages are so long, so much to say, don't know whether to laugh or cry.

Thanks very much for all the information.  My doctor is a GP, he wouldn't know that much about foods but right right.

I will have a look at Alkala and never heard of cacao or stevia, thank you for that I will do some research.  I have plenty to look into from your posts.

I know that a change in diet will help but find it really difficult, I have a family and children who like certain foods and even though I don't have to eat the same foods, I find it really hard to get specific foods for them and specific foods for me, also find it expensive.  Here in Australia the unhealthy foods and foods that cause problems are so cheap.  The health foods cost so much and now our government want to apply a GST tax to all fresh foods which if it goes ahead will apply to all our vegetables from green grocers or supermarkets that are fresh, freshly cooked breads and anything else that is fresh in our supermarket, its really hard to compete.

Sarah

Thank you, yes i have thought of doing that my mother Inlaw was a regular fruit and veggie grower and I wish I had of got some knowledge and help from her before she passed away, would have been extremely helpful.

Thank you great idea.

Sarah

Looking at the bowel instead of the  undulating curves of a healthy bowel the edges look as if they have tassels or fringes along the edges - these are little pockets that have occured during the life time.- Diverticulosis-  I was told 80% of adults over the age of 50 have some form of these "pockets" It is unknown what causes one or more of these to get infected or inflamed, i was told not diet related, but if very constipated there could be a relationship with the sluggish movement and perhaps even some food getting trapped in one of these pockets causing irritation etc. The danger is that  the wall of the bowel will erupt spewing out infective material and bowel content into the peritoneal cavity - Peritonitis (the "bursting" of a boil for example) and death can occur from the shock to the system if not treated swiftly. It is VERY painful

Diverticulaitis is treated with intravenus antibiotics as the bowel needs to rest and becasue of the sluggishness - stasis- the oral route for antibiotics isnt adequate or very effective.

I was on a drip for a week and nil by mouth for  that period - including fluids

High doses of Morphine were prescribed but i am allergic to this analgesic so suffered. Only one bout but i make sure i dont get constipated

Thank you for your very informative post on Diverticulosis and Diverticulitis thats pretty scary information that I had not been told by any doctor, gastroenterologist or bowel specialist, information worth its weight in gold for any sufferers here, thank you.

I am sorry to hear you went through all of that and hope that you are recovering.

I am starting to panic about what is and has been occuring with the bowels for a number of years, the sluggishness you speak about the pockets ive been told i have and the frustration of reporting it to Australian doctors and specialists here and it getting no real attention or effective management particularly when my mother succumbed to Divertuculitis. So tired of reporting the same symptons over and over every year. Often bowel problems are so bad that i often wondered whether it could burst.

LS is least of my problems at the moment, going back to a specialist GP next week so will take bits n pieces of that information with me.

Thank you

You may have Irritable Bowel Syndrome... Check it out... There are medicines that will help the spasm. I have had only one bout of severe inflammation and that was over 10 years ago now. I do confess to reducing the amount of starchy foods in my diet now. Increasing your exercise will stimulate peristalsis...the movement of the gut...If you have  dog you will know how many times you have to pick up their litter after they have run about for a while!

you want to aim for soft formed stools, so keep a food diary to check your intake and your exercise to recognise the patterns that influence your bodily functions...including the LS!

good luck and relax...sometimes lying on your back gently massaging your tum from left to right will help to expell gases which can cause discomfort...it is better to do this alone if you don't want to lose friends!!! Sue

I do have IBS was diagnosed a long long time ago. Thanks for info on tum massaging good idea and tks for reply.

I second suedm's remarks about relaxing. It's key to find some time for yourself every day when children are young. I have a yoga tape that I pull out when I need to relax. Something like that might be helpful.

When my youngest son was 9 (he's almost 40 now) he became Type 1 diabetic. At that point the whole family changed its diet to accommodate minimal sugar for Eric. Interestingly, the following year all of us had fewer colds. 

Mothers and fathers would change family diets for the sake of one child with health issues, no questions asked. But sometimes it's not so easy when it's the mother. I think part of it is because the mother sees herself as the 'nurturer'. But if you think about it, if the mother gets sick(er), where do the kids end up? And for that matter, if she puts together a healthier diet all around, won't everybody benefit?

Veggies and fruit are key and I buy corn thins from Australia that are cheaper than bread, and are considered a whole food. Etc. Lots of info on the web for these kinds of diets and they're not necessarily "health food store" expensive. You  might want to check it out.

All the best, Sarah!!