HI All,

I appreciate your pm's, but have not had enough energy to respond. Had the one good day of eating and then resumed nausea. Am stumbling around feeling drunk on the first dose of fenergan. My surgeon's stand-in thinks I should go back to UCSF for nutrition/dehydration and to figure out what's wrong.

The doc said today I may have prednisone withdrawal if I had taken over 40 mg of prednisone during the past year. I have, and that withdrawal is what I feel like. She said to tak two days' worth of 20 mg prednisone each day, and if I felt better, then we'd know what it is. I've put off taking the prednisone today because it's so hard for me to wean myself. Could she be right? Sez that the surgery is so difficult that I could now be cortisone-deficient as a response to the trauma of surgery.

What do you medicoes think? Likely? The is a new study for UCSF.

Barbara

Barbara,

So sorry to hear that you're still not feeling good. If you were on the prednisone right before surgery, I would think that could be the issue. Docs usually recommend stepping down the doseage very gradually (5mg or less at a time) because the withdrawal otherwise can be wicked. I felt like I had been hit by a truck for about a week, and that was when I was weaning myself off of it. It does pass, but it is certainly no picnic. If they're suggesting it, taking a bit of the prednisone may help you feel a bit better, especially since you are so soon after surgery.
Hope you're feeling like yourself again soon!

I was never on prednisone, except during the surgery stays in the hospital. Even then I had to do the taper thing. I know you hate the stuff, but if it makes you feel better then that's a good thing. If it does nothing then you'll know it's not pred withdrawal.

You'll be good a new soon. One good day is one good day! And there'll be many more of them. Other than the nausea, do you feel better than when you had the naughty pouch? Or can you even tell yet?

kathy

Hi Barbara,

I think Kathy may have mentioned dehydration in another post and it may be contributing to your problems. I had a very high output (temp) ileostomy for 3 months over a hot Aussie summer. I needed to empty the bag every hour or so and I was absolutely exhausted, dizzy, nauseous etc. What really helped me were oral rehydration salts, lemon water (water with freshly squeezed lemon juice) and bananas. I started getting my energy back after about 2 months.

Take care,

Nikki

I had a bad case of Prednisone withdrawals a few weeks ago. I had been on 40 mg for many months and was inpatient to taper quickly so I wouldn't have to look like the Michelin man when I went on vacation... I ended up in my doctor's office thinking something was seriously wrong! Pain and more pain, plus an all over feeling of just being sick. My poor body was not happy. After upping the dose as suggested by the doc I felt back to normal within 24 hours. I have since been tapering much slower. Staying on each 5 mg stage for at least 2-4 weeks have been helpful. Currently on 10 mg, but I am not sure what will happen with that since I am having my 1 step of 2 surgery on Monday...

Barb, I am so sorry I missed this post before.

But, yes, yes, yes, you can definitely have adrenal insufficiency months and months after you have tapered off of the prednisone. You are at risk for up to a year when your body is under stress such as trauma or surgery. I hope you have followed your doc's advice and taken the prednisone. I do not want to alarm you, but avoiding this can be quite dangerous. So, if you are feeling dizzy and weak, it is really a sign to heed.

I hope you are home to read this and not in the hospital.

Jan

Ah, I'm so sorry it's taken me a while to get back when I see such concerned, thoughtful responses. Thanks to Michelle, Kathy, Nikki 2, SweFlo and Jan.

I've now had nearly 48 hours without upchucking, and have been taking 40 mg pred. for about 6 days, broken into two 20 mg doses. A hit of sub-lingual zofran supplemented by occasional medicinal cannabis controls any further nausea. Otherwise, as evidenced by my fuzzy first post at the top here, I am confused, unsteady, nauseous and or vomiting for hours (as in Sat. night from midnight to three a.m., both dry heaves and not so dry), exhausted, so weak I can't even stand to shower or walk across the 32 foot length of the house.

I know about tapering off, but how gradually is the question, so it's helpful, SweFlo, to know how very long it took to get off. I was last on pred in April and May, and have a new appreciation for its power. I had compulsions I've never felt in my life, was constantly high, cooking meals with 3 new recipes per day, buying exotic foods on-line as well as plants that we could not afford - just simply totally out of control. then coming off it was almost worse than Oxycontin three years before. I am just a very drug sensitive person. When I did taper off the pred, I was going absolutely mad, but the taper was too sudden - 5 mg or later 2.5 every three days. So, of course, I wanted some confirmation from all of you that I really had to do it, and that the withdrawal could be managed. Jan, your serious tone really helped; the surgeon said the same thing - no choice, just do it. I see her again this Thurs., as I've been able to avoid another hospitalization this week and have a post-op appt 8/24, and we'll talk about tapering.

I have these break through nauseous periods about 6 hours after I take prednisone: due to its appetite stimulation, I'm always hungry and eating lots of small meals, so if I eat anywhere after 6 hours from the last dose, in another 2-3 hours, I'm heaving again. Thus the zofran and herb. The good news is I've eaten more (still not much) in the past two days, kept all of it down, and my weight is holding at 100 lbs, about 10 lbs down from post-surgery. Nikki, I'm able to keep hydrated better now, too, although my output is about like yours right now. I'm doing sub-lingual lomotil and powdered benefiber. So thankful for both home health care visits (1-2 x week) with a stoma nurse, and great email support from the stoma nurse practitioner/partner to my surgeon at UCSF.Thanks Michelle and Kathy for such encouragement, too. things are better than they were with constant excruciating blockages. I don't know how I'd managed for almost the past year with the pain. I know I couldn't be doing it now, and in an odd way, having the ileostomy now with some adrenal insufficiency and its difficulties gives me space to appreciate the ileo - not spending hours in the bathroom, not writhing in pain on the couch for months. Otherwise, I would be longer in resenting it and adapting to it (remember, as all of us have, I had a HUGE investment in a continent solution, spending 6 months researching the possibilities, finding just the right fully-active-life-T-pouch solution for me, and all the revisions and failures and 'rhoids and J and incessant hospitalizations for the next five years. I DO wonder why I waited so long for the ileo, but I also know why. Jan, you put it so well a couple months ago - we are really good at being really sick after so many years!

Well, this draws on long, but I wanted to detail just what the surgeon thinks so that when another of us comes along with adrenal insufficiency (A.I.), one of us will remember and can offer encouragement. The informal study at UCSF points to increased risk for A.I. if at ANY TIME during the YEAR prior to colo-rectal surgery, the pt. has been on a dose of pred. of more than 40 mg per day. In my case, I was completely off my original 60 mg dose for more than two months before my surgery. and how did I get on 60 mg? Being hospitalized in a small local hospital with docs who are too unfamiliar with the world of IBD. My attending at a blockage hospitalization though perhaps a week's blast of 60 mg would help heal the fistula and give respite from cuffitis. Then my UC docs thought that week blast without taper, just stopping cold, would probably have done me in, so I was in for the game.

It was all complicated because of my weakness prior to surgery, mal-absorption, short bowel-ishness, drug sensitivity in general, extremely long surgery, and just the general trauma of this latest surgery as well as the toughness of so many surgeries in the past five years. I'm REALLY looking forward to some normalcy and getting out of this bottom 5 % of general crappiness and difficulty where I always seem to land (keeping in mind that I was almost totally asymptomatic for the 40 prior years - on NO meds, not even sulfa, so was totally unprepared to deal with all of this!!!)

Oh, I get tardive dyskinesia on compazine, and was really sensitive to phenergan, so that's why the zofran which is mighty $ and ins. has so far refused - am working on that. OK, wiped out, but just had to say that things are better, a little each day now, I hope, and that this little ostomy world is fabulous. You are each treasures to take so much time to read and respond.

Much love, Barbara

Now that's why you're my inspiration Barbara! Even when things are not going well, you still take the time to set out your experiences for our benefit.

I hope you are feeling better with each passing day and enjoying all the wonderful, gourmet meals you've been describing.

Please continue updating us. You have a huge cheer squad; it's just that some of us (me ) keep forgetting to check the Ostomy section!