Last week I felt horrible (indescribably fatigued, tingly, crampy hands, no appetite, passing out, etc.) I very nearly passed out in front of my GP at baseball practice, so of course the next day I was in his office for blood work. He said that I was dehydrated and had slightly low potassium. He told me to drink a gallon of fluid a day and take thermotabs (sodium and potassium tablets.)

By last Thursday I still wasn't feeling any better, so I called my surgeon to see if he had any ideas. More bloodwork, and again it said I was dehydrated.

It is now a week later and I still feel lousy. I haven't fainted since Saturday, but still black out several times a day, especially if I have been laying down and then stand up. My doctors have both told me to drink (and eat) more, so I have been trying to have high-water content foods (soup, etc) as well as pasta and things to thicken, and have been drinking Vitalyte, water and some diluted orange juice.

Will I be able to resolve this problem on my own, or do I have to have an IV to get on top of things? (I am surprised that neither doctor has mentioned one, and I am kind of wondering if they are both thinking the other one is taking care of things. However, they both also know how much I HATE the hospital and will do almost anything to avoid going there.) Does this sound like it is "just" dehydration?

Have you recently tapered off prednisone? The reason I ask is because your symptoms seem more severe than is typical and not responding to the usual fluid and electrolyte replacement. If you have recently tapered off prednisone or dropped below 10mg per day, you need to check back with your GP or surgeon and look into secondary adrenal insufficiency, because that can also have dehydration and electrolyte imbalance as a sign, along with drops in blood pressure and dizziness.

Ordinarily dehydration is not that bad, but some just have a terrible time, particularly when they have the loop ileostomy. It should improve greatly after takedown.

Jan

Hi Jan, thanks for responding.

I haven't been on Prednisone since September, and even then I had only been on it off and on for four months, although I know my doses were pretty high (up to 120mg) at times. If it were adrenal insufficiency, wouldn't it have appeared before now?

I am getting nervous that if I can't get this figured out that my surgeon will postpone take down, and I am already trying to just make it through two more weeks with stoma issues. (And I asked my doctor if it was possible that I had an infection where the skin is missing under my stoma and could that be causing these other symptoms, and he said no, that I didn't show any signs of infection at all.)

I fainted twice Monday morning and ended up in the ER where I got two full bags of IV fluids. They said that should help me stay on top of things for the short term and to keep drinking as much as possible. A virus has been keeping me from thickening up my output at all in spite of Immodium and Metamucil wafers. It's just very very liquid.

If you're still feeling that bad you may want to ask your doctor about IV fluids even if he didn't mention it. Or even heading over to the ER. If you feel light headed you may want to consider calling 911. If you arrive via ambulance you'll be seen pretty much immediately.

Meesh

Cant believe they havent ordered IV fluids yet. I was dehydrated 3weeks post op from colectomy and was ADMITTED over night for IV fluids. I was not as bad off as you sound, never passed out but had severely low BP, fatigue and dizziness.

After the night of IV fluids I was MUCH better and have been fine (as far as dehydration goes) since. Maybe that's what you need?

You are right. If it were adrenal insufficiency, it probably would have manifested before now. I would not worry that this will delay takedown. If anything, it might get it going sooner, since obviously it is due to your stoma and not being able to keep up with the output.

Jan

I've had to have IV fluids a few times, but last time it resolved itself in a few days- had a lot of broth. However, my doc did the first blood test, and another the next day which showed some improvement so we didn't do the IV fluids. He then did another two weeks later to be sure all my blood counts had resolved. Do your doctors know you still feel terrible? If not they need to know in order to investigate further or order the IVs. They only know what you tell them. I hope you see resolution soon, I know how miserable this can be!

Jan

The adrenal insufficiency may have manifested inself by now but the doctors might not be seeing the warning lights.

I tapered off Preds in Sept ended up in hospital week later sick sick sick. My surgery went ahead in Jan despite the problems I was having and ended up in Major addisional crises in HDU after. Finally left hospital 6 months later because the Endocrinologist was an idiot who decided I could NOT have Addisions as my potassium was down.

What is basic 101 Endocrinology is that Addisions and Adrenal insufficiency are slightly different and as I had chronic UC I was obviously going to have a low potassium.

I don't want to harp on or be a worry wort I just don't want anyone to go through what I did.

Do you have any other symptom...

* Sudden penetrating pain in the legs, lower back or abdomen
* Severe vomiting and diarrhoea, resulting in dehydration
* Low blood pressure
* Syncope (loss of consciousness)
* Hypoglycaemia
* Confusion, psychosis, slurred speech
* Severe lethargy
* Hyperglycaemia
* Convulsions
* Fever
Oh I also had a Major unnatural Thirst drank the ward dry I did. Like diabetics get.

As regards the confusion one I was perfectly clear in my own head at the time, however, my husband tells me I was not myself. Sometimes a bit manic sometimes just small things that were not me. So I have to think is this how I usually behave and not is my head clear.

How are you feeling now?

I hope and sure Jans right as she usually is though hopefully just your stoma

I am still not feeling great, although I am out of bed today (moved up to the couch!) Last night my sweet husband tried taking me out to dinner, but I didn't even make it through appetizers until I was laying my head on my arm on the table.

The only thing my labs showed were slightly elevated RBC and hematocrit levels, and slightly low potassium.

I talked to my surgeon yesterday because I was ready to give in and go to the hospital, and he told me that my blood shows I am not dehydrated, that something else must be going on. He said that if I wanted an IV then he would order home health, but felt it would be a waste of time and effort to go to the hospital, and that the fluids wouldn't help anyway. He said his gut tells him that we need to get rid of the ileostomy before I will feel better.

Of course, I told him that I was OK moving up my surgery date, but he said that we wouldn't even discuss that until after my pouchogram.

So, I am still blacking out, but hopefully we will get some more answers soon.

If your doctor is willing to send someone to your home to give you IV fluids I'd take him up on it, even if he doesn't think that's the cause. It can in no way harm you and perhaps it will help.

Meesh62

I agree that one way to rule out the dehydration is to get the fluids. If it does not improve your symptoms, then it is not dehydration. Being so weakened that you are passing out is definitely not something to be tolerated.

Jan

After step one when I was so poorly the Consultant decided to bring forward my takedown.
I had my 1st step around 15th Jan and takedown end Feb.

Unfortunately for me this was NOT the way to go as I had undiagnosed adrenal insufficiency and ended up in HDU after two ops with no steroids.

The weakness is way out of control and Jan is right as usual you cannot tolerate this. This is your quality of life the whole reason you had the surgery to begin with was to improve it.

Personally I would ask for an ACTH stimulation test to be done to rule out adrenal insufficiency.

Read up on it yourself and decide
http://www.mayoclinic.com/heal...sons-disease/DS00361

When to seek medical advice
By Mayo Clinic staff

See your doctor if you have signs and symptoms that commonly occur in people with Addison's disease. Most people with this condition experience darkening areas of skin (hyperpigmentation), severe fatigue, unintentional weight loss, and gastrointestinal problems, such as nausea, vomiting and abdominal pain. Dizziness or fainting, salt cravings, and muscle or joint pains also are common.

Your doctor can determine whether Addison's disease or some other medical condition may be causing these problems.

Just note that people with adrenal insufficiency do not suffer with darkening of the skin only primary addisionans do.

Interestingly enough I have never had a salt craving despite the Adrenal Insufficiency and the pouch and I don't eat salt.

You got yourself a good man there
It does make it easier to have someone to lean on

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