Hey Gang,
I'm new to the group and I love the site! You are all a very well informed and candid bunch of people who I wish I could meet you all in person just to have some laughs. On to my serious stuff. I was diagnosed with UC in 1990 and failed all drug therapy by 1993. I was then and still am a lacto-ovo vegetarian. I was in the Navy on recruiting duty, single , partying, dating, etc. High stress job with an unhealthy lifestyle to boot. I was still in good shape, captain of the base swim team and an avid golfer. I was around 6 foot tall and 180 pounds. After 6 months of prednisone, my weight went into orbit at about 230 and the rest of the meds they had me on turned me into Mr. Hyde. I finally gave up on the meds and flushed them all down the toilet and asked the military to do the j-pouch surgery on me. I had the top colo-rectal surgeon in the Air Force fly out just for me and he did a great job.

After the surgery, they neglected to ween me off the prednisone instead just stopping me cold turkey. My endocrinologist later told me I was lucky to be alive. I spent weeks not being able to breath or walk without help before the endo Doc caught it and put me on cortisone which turned me around in a matter of hours. That was all a long time ago. I finished my career out with the Navy on submarines being the only guy in the Sub force without a colon. Now I'm retired in Florida.

Here are the problems: Hypoglycemic like symptoms (fatigue, shakes, depression, tremors, blurred vision, headaches, etc.) Sometimes light, other times moderate to heavy. Fatigue is the overwhelming element. Of course you add this to all the other J-pouch issues of no sleep due to frequent bathroom trips, gas and bloating, and weight gain. I work out as much as I can, eat vegetarian, don't have a colon and still can't lose the weight now at 217.

Blood tests were normal. 45 days of Prozac did nothing. Iron tablets helped a little. I take multi vitamins and C. I drink lot's of water. Don't smoke, and rarely drink anymore due to low tolerance of alcohol.

Questions: Are the vegetarian J-Pouchers out there seeing any of this as well? Has any one else been treated for Hypoglycemia? Any weight gain issues out there? I feel that if I can beat the fatigue I can increase my metabolism and get more out of my exercise and lose more weight. If I lose more weight I will start feeling better but right now I AM STUCK AT 217!!!

Thanks for any suggestions.

Paul

Hi Paul,
Welcome! I have been on this site for a while, even tho I do not post a lot, but I have a similar situation to you, although, I am not a vegetarian. I have the chronic fatigue and hypoglycemia and a raft of auto-immune diseases.
I am in the same rut as you with not being able to loose weight and have not a lick of energy.
I really am sorry that you are having these problems and just want you to know that you are not alone!
One thing you may try to help you get a little more sleep at night is to take straight codeine.
Codeine constipates or in our case may reduce the number of trips to the can. Even if codeine cuts down a trip or 2 at night, that extra sleep my help some. (30 mg codeine is probably the dose you may need to get some relief).
Best of luck.
Tazzy

I assume you had a fasting blood test?

I get some of the same symptoms, shakes, tremors, and headaches if I am not consuming enough salt. You might be drinking plenty of water but are you getting enough salt in your diet to retain it? I also drink Hydralyte by Gookinaid www.gookinaid.com It's great for staying hydrated especially in extreme heat of while exercising.

You might want to try a different antidepressant. It can take several attempts to find the right one that works best for you. I saw a psychologist who specialized in chronic illness and she identified my symptoms and my doctor picked the right AD for my symptoms. I was lucky in that the one selected was the one that worked. It doesn't always work that way. I also take Forvia vitamins, www.forvia.com developed for people with UC or Crohn's. I have better results with those vitamins than with the regular ones.

As for fatigue, for me I am more fatigued if I am not getting regular exercise. I know that sounds contrary but I have more energy when I am actively working out regularly. I am right there with you on the weight thing, I was at the right weight before surgery and am now 20lbs over weight. I exercise frequently but can't seem to get the weight off. I finally decided that for me it was better to be a bit fat and healthy than sick with UC and think. I am not happy with it but, oh well...

Sue

Thanks Tazzy,
Codeine makes my nose itch like crazy. I would be up all night scratchin'! How are you treating your hypoglycemia, are you under a Dr's care for it, does the Doctor think the j-pouch contributes to the hypoglycemia?
Paul

are you on any meds you just stop taking cold turkey also if ya taking prozac do not stop taking cold turkey you can have bad with drawels.

I agree with above get something else prozac is strong stuff and can mess with your body and head hardcore. To me sounds like with drawels from some sort of drug I went through this so thats what I think best of luck to you .

Hi Paul,
Diabetes runs in my family, so in my case the hypoglycemia may be an early indicator that my pancreas is acting up.
I find that cutting out caffeine (no caffeine more than anything seems to help), eating smaller more frequent meals and less carbs seems to help, but with a vegan diet I would guess you aren't carbing out?
Also, eating more protein (not sure what type you can have) is good. Of course sometimes I think a lot of what we go through is because the food flies through us so fast that we aren't absorbing what we need to (except the darn calories!!!!).
Sorry you can't take codeine, I can just see it now, a codeine... and a benydryl for the itching...
would probably get you some sleep but the result of sleeping thru the bathroom calls...yikes!
can you take any other pain meds just at night to help?
my doc tried a couple different pain meds for the constipation factor, luckily she is good about trying what she can to help me get a few hours sleep a night.
Good luck,
Tazzy

Paul,

I should have mentioned that depression can manifest itself in a host of physical symptoms. I think it would be wise to pursue treatment for the depression.

Sue

Tazzy,
I drink a lot of coffee. 22 years in the Navy, it's pretty much a part of my life like...air or sunlight. I have switched over to small meals and snacks instead of 3 squares a day. I really try to stay as drug free as possible (caffeine one of my exceptions). I admit that I don't have a specialist following me for any of this. I pretty much have just been sucking it up for 15 years. I need to find one who can help me with this.
Paul

I'd say it's definitely worth investigating whether you are properly hydrated. As Suebear pointed out, you can be drinking plenty of water but you can still be dehydrated if you aren't absorbing enough sodium and potassium. Obviously, you've had some unusual problems because of the sudden steroid withdrawal but, if it's not connected to this, then my bet would probably be dehydration. You may even find drinking lots of coffee exacerbates that (depending on how strong the coffee is). Check out as well whether you're anaemic, just in case.

Paul,

How long have you had these symptoms? Ever since you got off prednisone or are they recent symptoms?

I would be curious to know if having an adrenal crash like you did has any long-lasting effect on your adrenal system. If it weren't operating up to snuff, you might find yourself lacking in energy. I wonder if Jan knows of any long-term effects?

Other than that thought, I can't think of anything other than what everyone else has mentioned.

You do eat chicken - right? Maybe you could see if more protein in your diet helps with the energy level.

Also, in the General Discussion there is a thread on Salba. I am finding it gives me an energy boost in addition to the other benefits. You might give it a try for grins.

Elmer,
I had my prednisone crash in 1992! I have never felt the same since. My therapist says that every person he has ever worked with who had ever used prednisone, no matter what their situation, has never been the same after they stopped using it. Something was different about them. Thats hard to interpret but I trust his intuition.
Paul

I am addicted to coffee....strong coffee....and I find I'm far more thirsty when I drink more coffee than usual. So, I always try to drink at least 8 ounces of ice water along with any cup of coffee I drink. So far, so good on the hydration issue. I've been told caffeine is very dehydrating.

I was also thinking, have you had your thyroid checked? Dehydration will also cause a lot of symptoms. Maybe eat small multiple meals and snacks a day to keep your blood sugar in check. Try to balance protein, carbohydrates and good fats in each meal. Peanut butter on whole wheat crackers or peanut butter on apple slices type snack.

Being ovo-lacto vegetarian should give you all the animal protein you need (for those who don't know what that is- it is not vegan- but just vegetarian that also eats milk and egg products- no meat, including chicken and fish). Anyway, B-12 should not be an issue for you because you'd get plenty from milk and eggs.

However, you could have low iron stores, but that should not make you fatigued unless you showed anemia in your blood counts. You say that they are normal, so I am puzzled that iron would help somewhat.

Dehydration could really be an issue for you for several reasons. The main one is that once you have the j-pouch you are perpetually at risk for dehydration, and many of us are on the edge all the time. Consuming lots of caffeine certainly does not help. It is a diuretic, increasing your fluid loss, plus it is a stimulant, increasing peristalsis and fluid loss through your gut. I was a serious coffee junky before surgery (years and years of working graveyard shift), but made the decision to go decaf after surgery. To prevent the headaches and shakes of withdrawal, I gradually reduced by just gradually increasing the ratio of decaf to caf in my brew, until it was 100%. I still have the occasional full leaded stuff. All the symptoms you describe could be from dehydration. Mild, chronic dehydration fits with your description. If it was hypoglycemia, eating simple carbs would cause an immediate reversal of symptoms.

Thyroid issues are something to really consider. Simple to rule out with blood tests.

You should not have long lasting effects of prednisone use. However, since you do have the history of adrenal insufficiency, it is entirely possible that your adrenals never truely came back online 100%. How long has it been since you had a cortisol level done?

No chronic fatigue workup would be complete without checking liver and kidney function, along with viral causes, such as hepatitis, epstein-barr, and mononucleosis.

Jan