My Experiment

Hi everyone,

I hope you are holding the fort better than I am right now.

I am very hopeful that I'll be able to figure out this condition soon.

At this point, I tend to believe that Colitis itself is a symptom of another pre-existing condition...possibly Adrenal Fatigue, which has been talked about many times on this site.

Sometime in March I will enter a clinic to have my sleep monitored because I'm not getting eight hours of "sound" sleep, even when I think I'm getting it, I'm not...I believe that's the reason for the stress my body is under, which leads to bowel issues. The only remedy so far is exercise, which as we know relieves stress. I believe the root cause in my case, is low cortisol levels...in 2008 I took several tests and the cortisol, progestrone and testosterone levels were all low. Cortisol controls heart rate, blood pressure and inflammation.

Hopefully, the blood I gave recently and the sleep over tests will put me (and possibly all of us) on the road to recovery. I know this sounds kind of like "he thinks he knows it all", but it's the last bit of hope that I have right now and I apologize if it comes across as cocky...I'm really, really tired of colitis and I need my life back, so I hope something positive comes out of this.

Please keep me in your prayers,

NBT

Who is doing the cortisol, etc. tests? I've looked into adrenal fatigue before since my UC is in remission and I still feel like crap, but my PCP didn't think I had it because my thyroid blood tests were always normal. What are the treatments for adrenal fatigue?

I had a consultation with a sleep doctor who said my unrestful sleep and fatigue sounded like hypersomnia. And if the sleep test matched the diagnosis of hypersomnia, then I would have to take something like Provigil forever...I'm not too keen on this idea. I'd rather just get my 10 hours of sleep than take an addictive drug forever.

For the last few months I've been writing a feature story regarding sleep disorders. This is a portion of my findings:
"A study points out that changes in sleep is often one of the first responses to acute inflammation and infection. Evidence shows that sleep disturbances can worsen chronic inflammatory conditions, aggravate disease symptoms like pain and fatigue, increase disease activity, and lower quality of life.
Sleep disruptions can lead to immune suppression and increase in cytokine molecules that control the body’s immune response."

But the study shows that sleep disruptions won't cause IBD but can effect it significantly.

Hope this helps.

What if it is adrenal fatigue ? What is the remedy for that ? Prednisone is not an acceptable answer.

Let's continue to share information, especially in regards to cortisol levels and I will also keep you posted when I get results...hopefully something will become apparent.

ps.
one of the best remedies for adrenal fatigue is rest; going to bed by 10pm...taking your multi-vitamins and occasional light exercise.

NBT

FWIW my sleep problems disappeared when I got inflammation down. IMO the UC is causing sleep issues not the other way around, at least I've never seen any scientific studies saying lack of sleep causes UC but many people report having sleep issues after getting UC.

I see your earlier sig. said that your colon was 100% healed so perhaps your sleep problems aren't UC related.

I take an OTC sleep aid (for years), same ingredients as Benadryl, and I'm out like a light in 15 minutes.

Have you tried hypnotherapy? It could work well if there are no physical reasons for waking up (bathroom etc).
There are MP3's available.

kiolm said...

Sibby said...
I didn't find any studies that said sleep was more important than water. But my thesis was on how sleep disorders effects health and quality of life.
I do know that some people can have restored sleep by 5 hours and some need 9 1/2, which I found interesting.

Well we need to breath first and then not freeze or burn up but next comes sleep. We can go a lot longer without water than we can sleep. I think 5 days without sleep and you die. There's even a rare disease where people die from lack of sleep as it progresses.

Sleep is puzzling.

It truly is. Sleep and water go hand-in-hand really. Before we're at a critical stage beyond sleep deprivation, we'd suffer from micro sleep. Both water and sleep energizes our bodies, without it we can't heal or reboot ourselves.
I'm not sure on the 5 days. I can't even remember how long we can go without water before our bodies takes it from our organs.
But after this feature story I wrote, I've found out more information regarding sleep and disorders. Interesting to say the least.

After 5 days of no or little sleep, you don't die but you have hallucinations. You're mind starts to enter a REM sort of state, trying to compensate for the lack of sleep. It is approximately 1-2 weeks of no or little sleep that it becomes dangerous and/or deadly. I am a chronic insomniac. I have had it for about 8 years. It started slowly but it progressed to where I was lucky if I was getting 4 hours in 5 days. Yes I started hallucinating - kept seeing floating flowers like you see when a kid draws them. Not fun! I use a sleeping pill every night but I have been thinking of asking for a sleep study as well. Let us know how the results turn out okay?

With water, you can last approximately 5 days with no water but at 3 days you become dehydrated. It depends on how hydrated you were to begin with. I know with food, you can last 2 weeks or longer with no food, depending on your fat stores.

Hmmm Well I am not your sweetie and do you think in 8 years that I haven't already pursued all avenues of the whys and whats of my insomnia?

kiolm:

I thought you were "done with this"?

It is not nice to call people sweetie when you don't know them well. It is condescending. This is not an opinion, it is a fact.

Please drop it.

notsosicklygirl said...
kiolm:

I thought you were "done with this"?

It is not nice to call people sweetie when you don't know them well. It is condescending. This is not an opinion, it is a fact.

Please drop it.

I think it is how the word is used. My dentist calls me sweetie, and I really like it.

I used to have big issues with people calling me "ma'am" until that is people started calling my younger daughter "ma'am." I thought "ma'am" meant that they thought I was old. Clearly, my younger daughter, at 21, is not old.

I've heard other women have issues with being called "miss." They think "miss" means the other person doesn't think they are likable enough to be married. I still, at 49, prefer to be called "miss."

Poor men. They get yelled at by women no matter what they do.

However, if you tell someone that you don't like being called something, then that person should stop calling you that. It's kind of like if someone gave you a nickname that they liked but you didn't.

Hi Everyone,

I hope you are having great holiday, one of enjoyment and no flares. Let me apologize for not keeping this thread up-to date, but I didn't want to make a post unless I thought I had something worthwhile.

The sleep study results showed nothing abnormal, except a slight abrupt shake during the night. I also had complete lab work done, which showed nothing out of the ordinary. In fact, my family doctor kept saying the results are "perfect" and now he doesn't want to see me in his office because of the results (he probably thinks I'm a head case now).

I have tried all sorts of things to figure out what can help me live a normal life with UC, at least until someone figures out what UC is. I have discovered the following things not only help "me" recover from flares, but they also prevent them from happening in the first place.

1. Go to bed no later than 10:30pm whenever possible.
2. Exercise at least every other day, light jogging to break a sweat 40 minutes.
3. Follow a strict sugar free diet and reduce starch intake, this is to control yeast/candida.
4. Take vitamins & minerals daily; a nutritionist may help to determine what you need (Iron, B12 & vitamin C are vital)
5. Take a good probiotic daily (see my signature to see what I take -- culturelle is also good)
6. Take Konsyl (I use orange sugar free flavor, psyllium fiber).

I recently started taking garlic supplements called, "Garlicin", I did a lot of research before buying this particular product because not all garlic supplements kill yeast, but this one does. I take more than the recommended dose...after each meal I take 4 tablets and since then I have been able to eat "cakes" and all sorts of stuff that I really shouldn't with little or no problems in terms of UC. It is truly amazing....once the holidays are over, I will go back to my diet and I am sure I will feel normal because I am almost normal now. I have been breaking all my rules and I am still ok. I purchased them online from amazon and the tablets are odor-free although, in my opinion it's not totally odor free as advertised, sometimes there is a slight garlic odor in my mouth, but it's bearable.

I am really shocked by the results and for about $10 to $15 bucks for 180 supplements, you can't go wrong. But bear in mind, that just because this works for me, doesn't mean that it will work for you. The garlic pills have given me my life back, I've been going to restaurants like Applebee's and I'd order desserts like chocolate cakes...in fact, a few weeks ago I ordered a chocolate cake with a warm fudge center "AND" a maple butter blondie ---- that's TWO desserts! I think I took 6 garlic tablets after that meal and I was fine after that. Normally, eating one desert would put me into a flare that would take weeks to recover from, but not anymore.

My advice is if you decide to follow a regime like mine, please be more serious than I am once it works...

Well, this is my holiday gift to you and I hope it helps and that it brings hope and joy to your lives.

Love you all,

take care,

NBT

aguywithUC said...
I am very sensitive to initial signs that things are slipping from normal which for me is a bm once per day or every other occasionally. If it happens twice in one day I drop everything outside my trusted list of anti-inflammatory foods. I get back on track quickly.

My strategy is very similar to what is mentioned above. Besides subsisting only on 'safe' foods I increase supplements especially psyllium seed and probiotics, VSL3 and Culturelle. The key is to prevent the flare before it starts, an ounce of prevention is worth a pound of cure.

So far it has worked for the past 20 months but who knows how much longer? There are too many people here on this forum who have tried diet, supplements, safe meds, and biologics with only temporary success for me to think I have all the answers. All I can say so far is that I have been in remission for 20 months without meds and I hope that my luck continues to hold out. There is no way I will "order a chocolate cake with a warm fudge center "AND" a maple butter blondie", no matter how well I am feeling.

(Between you and me, I would have to be on my death bed before trying any toxic meds. But that is me, I have been a health freak all my life. But I would never, ever recommend someone else not to take meds.)

Your recommendation for Garlicin is interesting. Before my UC I had trouble with plantar warts. I would get them burned or frozen off but they would always return. Out of desperation I bought a bottle of Garlicin and never had a problem with warts again.