I never did when I had or before I had my pouch. 

Only thing was before my pouch was steroids. 

With my pouch I was taking nothing. 

I was always wore out when waking. Sometimes and most days it lasted all day.

I was lucky to get 5 hours of sleep. 

I was miserable  But. And this is not for everyone.  I had mine taken out. It never quite worked right. From the start. Now that I have an ileo I sleep 9 hours. Funny thing is it takes an hour and two cups of coffee to get me going  ow. 

Sorry to hear your going through this  It's not easy and I know  I went through it for so long I can't say. But decades of no really good sleep. And towards the end before my removal it was high on my list of reasons to remove it. Not number one. And it's not a solution for everyone. 

Definitely not your solution. 

Sleep is so important especially if you are working and have to get some sleep to be able to work. 

I only hope you can find a solution. I couldn't  And I'm sure some here will have a less drastic solution as mine. But mine wasn't for just sleep alone. 

I sleep well now. Better than I have in a long long time. But I still wake tired. (I'm  it a young man any longer) But it dissapates quickly  Not like before where I was so fatigued before even going to work. Not gonna even mention how tired I was by the end of my shift. Wow.

So to answer your question  I woke up like I hadn't got any sleep with a pouch. 

Does your feeling of being sick and tired when you wake dissapate as the day goes by? 

Richard  

(sorry for rambling. Most of what I said wasn't necessary  

Lol.

Richard  

Try taking vitamin D to help your sleep. I don't take any other vitamin or supplement of any kind, only D. I suffered years of poor sleep and, as you do, waking up feeling sick and weak, barely functioning. After my surgery, my doctor told me to take vitamin D because bloodwork showed I was low. The unexpected result was deep sleep. It has something to do with daylight (which is the D vitamin, after all) and melatonin. You could also try taking melatonin tablets. I did for a short time and had great sleep, but switched to vitamin D and still get deep sleeps every night. Don't take vitamin D in the afternoon or at night. This timing will keep you wide awake all night, again it has something to do with the sun and light cycle and how your body perceives it. Someone with more knowledge please chime in and explain!  Take vitamin D in the morning, at breakfast, with some good fat (peanut butter, avocado, cheese). It will absorb much better.

You might be sleeping 11 hours, but you might not be in deep restorative REM sleep. Costco has great prices for vitamin D. It's a 2 bottle deal (360 tiny tablets in each) that will last you two years. Try it. It's an inexpensive experiment. I wish I had done this years ago. It is so simple. Good luck.

Yes it dissipates after a couple coffees within the first hour or so of waking but I never quite feel 100%.  Its just enough to zap my drive to workout like I used to.  There is a temptation to hit the caffeine hard to compensate but the anxiety keeps that in check.  Sometimes I wake and almost dream of the times of feeling refreshed upon waking pre colitis.  I can't even remember how I felt pre pouch bit I think I felt better upon waking even with my colitis colon still, although that was likely only a matrer of time as well. 

Thanks i take vitamin D but have not been consistently taking, will take in the mornings.  

I have the same feeling but since I have had IBD for 46 of my 55 years I haven’t attributed it to the IBD, but rather the poorer quality of sleep I have experienced as I have gotten older. Much of that is due to my sedentary work and lifestyle. I have observed that my highest quality sleep comes when I am most active both physically and mentally. Unfortunately the physical part lags behind the mental due to sitting at a desk and working at a computer most day. I sometimes wake up and feel as you do, not sickly but lethargic, and I need to drink an extra cup of coffee in order to have the requisite energy to go about my work day.

asdfqwer posted:

I have come to realize I may never wake feeling truly refreshed and good like I used to.  Even on the weekends when I cam sleep longer, often 10-11 hours in bed I still have kind of a fatigued sickly feeling in the morning.  I feel especially bad during work week when I may get 6-7hrs.  I wake up feeling worn out, lately it reminds me of how I feel just before I become ill with a cold.  I take cipro and amoxicillin every 4-6 weeks and Im in my early 30s with a j pouch that I have had for about 10 years already and just started monthly antibiotics about 4 months ago due to very mild but chronic pouchitis.  Does anyone actually wake up feeling good anymore, or is this what I can expect and worse as I age?

You're waking up either dehydrated or maybe hydrated but lacking essential electrolytes.

  I've endured this for many years with my ileostomy but never realised I was dehydrated or lacking the essential electrolytes; Doctors gave all kind of reasons as why I was constantly fatigued but none ever suggested dehydration.

  Whilst awaiting takedown, I suffered many episodes of dehydration which all resulted in Hospital admissions.

Since takedown, I've experienced similar feelings of fatigue and also not feeling refreshed after a night of undisturbed sleep.

I've recently realised, I can actually be hydrated but still lacking the essential electrolytes.

With the removal of our bowel we no longer absorb fluid like we once did, nor the essential electrolytes.

So the longer us J pouchers sleep, the more dehydrated we can become.

After all, we're sleeping 8-9 hours without fluid intake, nor do we have a digested mass within our bowel we can extract fluid from.

During one of my Hospital admissions for dehydration, I was advised to ensure I urinate no less than 3 times per day and my urine be of a pale straw colour; which I ensure to adhere to, however, I can achieve this and still feel lethargic.

I must consume fluids as often as I can, plus at least a litre of the St Marks emix rehydration solution every couple of days, more during hot weather or if more activite.

Never thought of the dehydration thing. Always stopped drinking before bed cause it wakes me. 

But  now I'm gonna try that myself. Even if it wakes me to go to the  bathroom  

Thanks. 

Thanks I may buy some of the rehydratiin droplets, maybe start with sone bottles at grocery to see if it works 

Within the UK Dioralyte is a product taken after a bout of diarrhea, it's a product such as this which is required; not sports rehydration drinks, as they may contain too much sugar, I guess other than glucose, which can have a negative effect.

I make my own solution by following the St Marks emix recipe:

20g (six level 5ml spoonfuls) of glucose

2.5g (one heaped 2.5ml spoonful) of sodium bicarbonate

3.5g (one level 5ml spoonful) of sodium chloride (salt)

Dissolved in 1 Litre of tap water.

The following is an extract from the St Marks emix solution pdf:

Drinking Two to Three litres per day may be necessary to maintain hydration.

The powders can be purchased from Pharmacies and Supermarkets, and will be cheaper than a NHS prescription charge.

The patient may find the solution bitter in taste due to the Sodium Bicarbonate; this can be minimised by storing the solution in the refrigerator and by the addition of a small amount of fruit juice or flavoured squash and sipping through a straw.

If this continues to be a problem, the Sodium Bicarbonate can be replaced by the same quantity of Sodium Citrate.

I do think there is something to be said about Strange's point that there is a tendency for J Pouchers to dehydrate at night and wake up with less than ideal hydration.  The proof of this is many times I wake up and go for the blood tests where the orders are "nothing by mouth after midnight" and the phlebotomist cannot get a vein because I am so dehydrated. I have a protocol of drinking a big mug of herbal tea (peppermint or chamomile) at bedtime and I also keep a bottled water on my nightstand near my bed, primarily because I take my synthroid pill at night and do so with a sip of the water.  Despite these measures, I think I am still dehydrated when I wake up in the morning.  Caffeine also dehydrates, so if after waking up the first thing you do is make coffee, this is probably not helping the situation, unless there is significant other rehydrating fluids imbibed as well.

I've been dehydrated multiple times , just because where I live its generally hot and I am not very much used to drinking water all day long. My urine is never yellow so I dont drink any extra fluid. I hit the gym very early in morning so I dont feel much fatigue. I just eat 2-3 bananas and sip a turmeric tea. Sometimes I'll have a tea/coffee instead. When I had UC I wouldnt be able to stay up for long but after my surgery I've been up and working for 1-2 days with minimal sleep. Though not exactly an ideal thing but just had some urgent work that needed to be taken care of. Anytime I have to stay up for long I just dont eat heavy meals.

I've found I can be hydrated when I awake, as first thing in the morning, I will urinate and my urine is clear, yet I still feel tired, rough and exhausted; kinda like suffering from a hangover, although I don't drink alcohol.

Normally, a hangover occurs due to the loss of electrolytes as a result of urinating more frequently than normal due to the level of fluids consumed. 

  During normal circumstances, a person  with a functioning bowel and consuming a normal level of fluids through-out the day, will be absorbing fluids and the essential electrolytes from the digested food within the bowel as they sleep; a task us J pouchers can no longer achieved, hence the electrolyte deficiency.

strange posted:

I've found I can be hydrated when I awake, as first thing in the morning, I will urinate and my urine is clear, yet I still feel tired, rough and exhausted; kinda like suffering from a hangover, although I don't drink alcohol.

Normally, a hangover occurs due to the loss of electrolytes as a result of urinating more frequently than normal due to the level of fluids consumed. 

  During normal circumstances, a person  with a functioning bowel and consuming a normal level of fluids through-out the day, will be absorbing fluids and the essential electrolytes from the digested food within the bowel as they sleep; a task us J pouchers can no longer achieved, hence the electrolyte deficiency.

I have a habit of adding salt to almost all my meals. I like the taste of it on my fruits, veggies, I also supplement potassium once in a while. Maybe that is keeping in check the electrolytes . I usually prefer more salt than others in all my meals. But I dont understand how dehydration can cause so much fatigue. I wanted to know because whenever I've aksed my surgeon he said jpouchers mostly suffer from iron and B12 defficiency. For electrolytes he just said drink a lemonade or a rehydrating drink if you feel like but thats highly unlikely.

It's not necessarily the dehydration, it the loss of electrolytes.

   Before takedown, I was unable to absorb the fluids which I was drinking, I dehydrated often and was admitted into Hospital on each occasion.

Doctors said to ensure my urine was of a pale straw colour and to be urinating no less than 3 times per day.

Judging by how often I'm urinating and its colour or lack of colour; I can be hydrated but still lacking the essential electrolytes.

Thanks going to buy some Pedialyte and try while i wait for order.  I ordered some droplets called Lyteshow on amazon has 2500 good reviews... 

Its been a good week or longer since my last cipro, amd although I felt better this morning Im having a lot of brain fog today...  are these sides really normal and acceptable? 

I can't help bit think 10 years from now these certain antibiotics will no longer be used for this due to dangers, really disturbing conundrum to be in. 

If you’re still having brain fog a week after your last Cipro dose then the brain fog most likely has nothing to do with Cipro. While it’s true that some side effects can persist, it’s much more common for the side effects to disappear as the drug does.

asdfqwer posted:

Thanks going to buy some Pedialyte and try while i wait for order.  I ordered some droplets called Lyteshow on amazon has 2500 good reviews... 

Its been a good week or longer since my last cipro, amd although I felt better this morning Im having a lot of brain fog today...  are these sides really normal and acceptable? 

I can't help bit think 10 years from now these certain antibiotics will no longer be used for this due to dangers, really disturbing conundrum to be in. 

Be good if you can report back after a few weeks use of the Pedialyte, then also the Lyteshow and whether their use has you feeling more refreshed ?

If you decide to try Vitamin D3 to help sleep, you need at the very least 25mcg / 1000 IU per tablet.  If you're taking a multi vitamin that contains some D it will be very low dose, around 200 to 400 IU, which is nothing, and it won't work at all. Some people take up to 4000 IU per day (that's four tiny tablets). I take 1000 IU at breakfast and it gives me deep sleep. Bottles of Vitamin D3 are usually sold in doses of 1000 IU tablets. 

A good way to remember to rehydrate is drink a glass of water after each visit to the washroom. This could be up to 10 times a day!

strange posted:

asdfqwer posted:

Thanks going to buy some Pedialyte and try while i wait for order.  I ordered some droplets called Lyteshow on amazon has 2500 good reviews... 

Its been a good week or longer since my last cipro, amd although I felt better this morning Im having a lot of brain fog today...  are these sides really normal and acceptable? 

I can't help bit think 10 years from now these certain antibiotics will no longer be used for this due to dangers, really disturbing conundrum to be in. 

Be good if you can report back after a few weeks use of the Pedialyte, then also the Lyteshow and whether their use has you feeling more refreshed ?

Yes Ill report back probably in about 3-4 days.  Thanks for info

Wanted to wait awhile to see if results lasted.  I was really impressed the first couple days with how much better I felt and the energy.  I bought 2 bottles of Hydralyte 1L from Riteaid and drank about one a day.  The boost did seem to wear off a bit but I have still been taking daily and I think it's helping. 

Since the liquid bottles are a bit expensive to drink every day I have used droplets from amazon, just use 3ml mixed with water and seems to work OK. 

I assumed I was decently hydrated because I would almost always drink at least 2 - 12 oz cans of sparkling water, many times up to 5 a day but it's not enough without electrolytes.  

I would highly suggest everyone supplement with electrolyte solution, especially in the mornings and maybe evenings.  

Hey, I'm pleased my suggestion is working for you.

I find salty snacks appear to make a difference; I tend not to add salt to my food and on occasions when feeling exhausted, a packet of Salt flavoured Crisps (UK equivlent to Pringles) helps, although my Doctor dismisses this, suggesting it's more likely a sugar rush.

I've found I can actually be hydrated to the extent that my urine is clear, yet I'm still lacking the essential electrolytes; it's possible to drink so much fluids, far less than we realise, that the electrolytes can become diluted; some fit and healthy Marathon runners have colasped during a race and died from such a condition.

Rather than buy ready made electrolyte supplements or drops; I make my own rehydration solution, which was provided by St Marks Hospital, they call it the St Marks e-mix solution, it's cost a lot less than ready made suppliments; I posted the recipe within my second reply to this thread.

Strange,

Do you know if sugar free Gatorade (G2) would be similar to the concoction you describe above?  

rustyskyline posted:

Strange,

Do you know if sugar free Gatorade (G2) would be similar to the concoction you describe above? 

The concoction I described is not something I've conjured up myself; it was supplied by St Marks, London; the Hospital where the J pouch preceedure was pioneered; St Marks is also a Centre of Excellence.

The e-mix Oral Rehydration Solution is also recommended by the World Health Organisation.

I've be informed by GastroIntestinal Doctors that sports hydration drinks tend to contain too much sugar; this has also been reiterated by some members within this forum.

An article I read, specifically mentioned that Gatorade contained too much sugar for Rehydration Therapy.

According to the Gatorade website, it states that one 355 ml serving of Gatorade (G2) contains 7g of Sugar.

Other than the serving quantities, I'm unable to confirm the sugar content of the e-mix hydration solution compared to that of the Gatorade (G2).

According to the Gatorade website; it replenishes lost electrolytes with half the sugar, so I guess it's a similar substance to the St Marks e-mix Solution but whether it's as effective, I would think not, due to its sugar content.

Actually, sugar free Gatorade doesn't have sugar in it. That's kind of why it's called sugar free.

I just don't have the time or patience to run around collecting all those ingredients if I can find a premade option.

rustyskyline posted:

Actually, sugar free Gatorade doesn't have sugar in it. That's kind of why it's called sugar free.

Think you best inform Gatorade that their sugar free Gatorade doesn't contain Sugar because their own website says it does. 

https://www.gatorade.com/produ...ety-12-fl-oz-24-pack

Scroll down to Nutrition Facts/Total Carbohydrate 8g  3% /Sugars 7g

Lesson learnt

Strange,

If you focus your google machine on sugar free Gatorade, you'll discover that it has zero sugar in it.

Having said that, sugar is not always bad. You need it to push nutrients into your cells. Your recipe contains sugar too in the form of glucose. If it ends in "-ose," it's a sugar.

rustyskyline..... If you're such an expert, why are you asking me.

In regard to rehydration, the concoction as you call it; has to contain a specific quanity of sugar/glocose in relation to the salt content and it's such a ratio which enables optimum absorption.

During my episodes of severe dehydration, which all resulted in emergency admission into various Hospital, many specialist Gastro Intestinal Doctors all advised against sports rehydration drinks, stating they contain far too much sugar to be effective.

I don't have the time or patience to be answering your questions, so focus your google machine on rehydration therapy and draw your own conclusion.

rustyskyline posted:

Actually, sugar free Gatorade doesn't have sugar in it. That's kind of why it's called sugar free.

I just don't have the time or patience to run around collecting all those ingredients if I can find a premade option.

Gatorade sugar free contains sucralose  and acesulfame potassium which might mess with the brain/gut connection, I try to avoid regular use of artificial sweeteners.  Other than that the gatorade looks to lack magnesium, chloride, zinc like many of the other dtronger electrolyte solutions contain.  Good chance it does more good than harm so worth a try maybe in conjunction with other things

strange posted:

Hey, I'm pleased my suggestion is working for you.

I find salty snacks can make all the difference too; I tend not to add salt to my food and on occasions when feeling exhausted, a packet of Salt n Vinegar flavoured Crisps (UK equivlent to Pringles) really does make a difference, although my Doctor dismisses this, suggesting it's more likely a sugar rush.

I've found I can actually be hydrated to the extent that my urine is clear, yet I'm still lacking the essential electrolytes; it's possible to drink so much fluids, far less than we realise, that the electrolytes can become diluted; some fit and healthy Marathon runners have colasped during a race and died from such a condition.

Rather than buy ready made electrolyte supplements or drops; I make my own rehydration solution, which was provided by St Marks Hospital, they call it the St Marks e-mix solution, it's cost a lot less than ready made suppliments; I posted the recipe within my second reply to this thread.

 

Great thanks!  I'll be reading up on the e-mix solution.   I find the electorlytes an exciting option as I see no downside to it, at worst I just become well hydrated which has many healthy benefits.  I do feel it is nudging up the energy levels too.   Glad I found your post on the subject as it never occured to me.

asdfqwer,

Thanks for answering my question.

Do you know of a premade option?

rustyskyline posted:

asdfqwer,

Thanks for answering my question.

Do you know of a premade option?

Hydralyte, Pedialyte, or their generics all found at Walgreens/CVS/Riteaid or walmart target etc.  A little cheaper option might be droplets found at amazon and elsewhere like Lyteshow, maybe can buy powdered glucose to mix in with drops amd water for more effectiveness, although I would use minimal amounts as we know sugar can have negative effects on the pouch, experiment with and without glucose I guess

Definitely felt that way in my early days of takedown, I am still tired now, especially being tired a lot from going to the bathroom all of the time but totally worth it. I would just make sure to drink when you first wake up.

Sleep is a thing of the past for me now , I fondly remember the days where sleep was an actual thing  lol .

I am 12 years post take down and have always had an issue with waking up in the night. I do find it helpful if I avoid any food after 7pm; otherwise, i will wake up multiple times in the night.