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Crashed real bad, now on steroids, please help

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Ulcerative Colitis
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Posted 10/7/2016 3:50 PM (GMT 0)
Hi, everyone, few weeks ago I wrote about my management of UC without drugs, just with the diet and supplements. I was doing OK for almost year since diagnosis. But somehow in a few weeks time it has all changed into a nightmare.

My health started to go down rapidly at the end of September after stressful family event. I think I was also adding gasoline to the fire with some last resort experimenting with enemas. Well in a few days time I went from 2 BM's a day to 10 all with blood. I tried Salofalk and it did help me but I got strange bad reaction (nausea, fever, extreme neck stiffness and huge lymph nodes behind ears). I stopped the Salofalk, so stopped my reaction but in day I was up to to 30 BM's. At that point I went to hospital. At first it was thought to be some bug and I was put on metronidazole and Salofalk. Though I got better during day at hospital, in the evening all the Salofalk problems came back and that's when they put me on hydrocortisone IV. This alleviated the Salofalk side effects and next day I was feeling much better but the rectoscopy showed severe proctitis (they didn't risk to go deeper). During 6 days in hospital I got much better, down to 1 BM per day.

Now I'm out and on Medrol (methylprednisolone) 32 mg/day with 8 week taper. I don't know what to start with now, I was so confident with my diet before and now it's all crushed down. I even don't know with what foods to go now. Should I stick with my vegetarian diet or maybe I should try SCD, GAPS or something else. In hospital they gave low residue with meet and eggs. I tried eggs but they surely made thinks worse.

On top of that I got fast HR, weakness and weird chest pains when prednisone goes out after 20 hours. Also sleeping is nightmare, I sleep short intervals and wake up every 40-50 min. I was competitive runner two weeks ago, now I can't even jog and hold my kids without feeling exhausted after minutes.

Now I know this sounds stupid, but is this going to end? Are these just temporary side effects of steroids? I would appreciate any experience with steroids and how you did with side effects?
Posted 10/7/2016 4:28 PM (GMT 0)
Sorry to hear you're flaring badly Globetrotter.

I'd stick with flare safe foods, as they're always quite different than what we can handle while in remission. I'd stick to very bland and simple things, like chicken, rice, potato, and various soups and broths. As right now, raw vegetables, fiber, spices, caffeine and alcohol are going to give you a lot of trouble.

Were you tested for pathogenic causes to your symptoms, as nausea, fever, and huge lymph nodes behind ears all sound like an infection? Although you said that cleared up after ceasing the mesalamine, that's really weird.

All forms of steroids are going to cause insomnia, rapid heart beat, etc. You can always ask for a prescription sleep aid like Ambien, as it's sometimes necessary.

The moment we forget about UC, is when it reminds us it's still there. I believe that our inflammation creeps in slowly until it reaches a critical tipping point, after which we start seeing UC symptoms reappearing. It's silent, and persistent until the slouses open up all at once, unfortunately.
Posted 10/7/2016 4:31 PM (GMT 0)
wow, no fun - sucks when we think we are doing the right thing and then our UC rears it's effing ugly head and kicks our ass !

pred can really mess you up while it helps a lot of things - most side effects go away quickly once you're off the pred -

what exactly does your vegetarian diet look like - do you eat a lot of grains ?
Posted 10/7/2016 4:33 PM (GMT 0)
Difficulty sleeping is not a steroid side effect that goes away once you get used to them. That will ahve t wait until you finish the taper.

Exhaustion is usually not experienced from steroids, but is more likely due to UC, stress of a chronic condition, and possibly anemia form blood loss. You may also have low vit-D, due to poor absorption in the colon. I would have you iron levels checked: hemoglobin, ferritin, binding capacity ... etc. If you iron is low, as for an infusion, because supplements are hard on the gut and problematic when flaring.

What with enemas might have been a problem? It is hard to say if the severe proctitis might have been a temporary result of experiments w/o more information.

I would recommend probiotics, taken opposite from the abx. I would also ask about getting of of the Flagyl. It causes nausea and odd taste in throat. If your cultures did show infection, finish the course. But otherwise discuss suspending with your doc. If you get worse you can always restart.

If eggs really did make your symptoms worse (as opposed to any solid food), you are going to have to explore food sensitivities - and this can take weeks. But if your gut microbes are in disarray, then you could have temporary insensitivity to things you can normally eat. For now, low residue, and a few foods you feel very safe with.

If urgency is a problem, and given that the proctitis was severe - you should have some rectal medication: mesalamine, or even more steroid.

Ultimately the steroids you are on only by time. Usually time to let some other med work. You are not on any other med however. It is possible that once steroids tame this flare, that you return to a level you can manage without meds and only diet restrictions. I think it would be good if you could try different mesalamines to see if there was one you tolerated better. If none is found, you may want to consider 6mp or other purine drug.

Eventually it is going to be useful to know how far the inflammation goes. This is crucial for the balance of oral versus rectal treatments.

good luck
Posted 10/7/2016 4:36 PM (GMT 0)
Those sound like side effects from the steroids and once you get down to a lower dosage they should start to ease and will disappear within a few weeks after you complete your taper. How have you been instructed to taper? Don't rush it. Your goal should be to do it very slowly and if symptoms get worse as you taper you may need to step back up temporarily. Be sure to work with your doctor for the taper and if symptoms get worse

What are you going to use for maintenance after the taper is complete? Diet alone wasn't enough for you and relying on steroids isn't a good idea. They are a rescue drug to act fast as a bridge until your maintenance meds can kick in. At a minimum you should be on rectal meds, but you probably need a full colonoscopy to determine the extent of your UC to decide on the best treatment.

As for what you can eat right now ... go with low residue and add other foods slowly and let your gut decide. We're each different as to what foods we can tolerate.

Whenever I have had to be on steroids I drink a lot of water to help minimize the side effects, but nothing eliminates them completely. And each time you have to be on them you can get different reactions.

Hang in there!!
Posted 10/7/2016 6:03 PM (GMT 0)
Seems like you have some pretty good advice already. I agree that the steroids could be causing your elevated heart rate. Also look into some sort of med beyond them for long term use.
I find that a very bland, low fiber diet helps when I am flaring, as much as I don't like eating that way normally. I also cannot tolerate dairy very well when flaring. Hope you fee better soon!
Posted 10/7/2016 6:47 PM (GMT 0)
"Now I know this sounds stupid, but is this going to end?"

I am sorry to tell you but most likely no. Maybe never.
You may suffer like me like a tortured street dog lying
in an alley for the next 8+ years of your life. I hope
you enjoyed the life you used to have as you may
never ever have it back again for as long as you live.
That is just the way this tortured evil life works
out for some of us. In the end you become ok
with death and find ways to survive until death.
For me I refuse to get surgery and will die if
that is my only option left. Until then I am trying
to get entyvio or FMT while surviving on LDN
which is the only thing that helps me without
any bad side effects like prednisone the drug from
Satan.
Posted 10/7/2016 6:57 PM (GMT 0)
What to eat: chicken, turkey, ground meat will all give you energy and they have vitamins in them too.
Make a big pot of homemade chicken stock using chicken thighs, necks and inexpensive parts with bones.

I make mine in big pot that starts on the stove, bringing the chicken and a gallon or so of water to light boil then put the covered pot in a 220 degree oven for several hours or all day. End of the day you have lots of good chicken broth for the week. Your gut will thank you. Add a little salt to your taste and have a cup for breakfast, lunch and dinner. I make gravy, soup and sauces with it too. So healthy and versatile.

Eat well cooked veggies that don't have a lot of fiber, to give your gut less work to do. My gut likes carrots, spinach and green beans. You can also look for baby food that has been blended smooth. If you have a juicer you can make veggie juice that has the fiber removed. Don't go overboard with juice, it's very healthy but too much can cause D. I buy organic carrot juice in the grocery in the Produce section.

Do you think you are allergic to Salofalk and/or mesalamine? Some people are so it makes taking those RX impossible.

Flaring also happens to people who take RX meds so not surprising it happened to you too. It hasn't happened to me since diet modification got me into remission but it's always a possibility.

Best wishes for feeling better.
Posted 10/7/2016 7:50 PM (GMT 0)
Thank you everyone for the support, suggestions and experiences.

I must have been more specific about my meds - currently I'm on Medrol 32 mg/day and will taper off 4 mg/week for total of 8 weeks. I'm also on Salofalk tablets 4x1000 mg daily and 2x1000 mg supp. (I don't have side effects now, probably steroids removed them, but the effects were strange as iPoop also noticed). I'm also on Omeprazole 1x20 mg day.

I'm not on Flagyl anymore and I started to take Vivomixx probiotics once I was out of hospital. But Flagyl did cause me oral thrush (at least I assume so since the tongue is all white and hairy now). I'm taking anti-fungal mouth wash for this but the progress is kind of slow.

Except for general weakness, some weird chess pressure, rapid heart rate and sleep problems and mood changes I feel more normal now. Hopefully this resolves.

Today I had 2 BMs, both more or less solid, with some black/purple additions. I searched for this here and it seems to be Salofalk can cause black/purple additions to stool. I certainly hope it's not blood from upper GI tract.

about my diet before this all. I was completely off of all animal protein since I noticed that meat, eggs, dairy, fish etc. cause problems for me and I also limited sulphur rich vegetables. I also avoided gluten and grains as much as possible. It was drastic diet but I was willing to pay the price of being med free.

Now that I'm not med free anymore it's hard to push this diet for myself. I've lost the dedication and started eating cheese and white bread. I still am afraid of animal protein since the eggs in the hospital definately made it worse though I was on IV steroids at that point. Actually when I think back now, I tried to introduce fish into my diet for 10 days straight of 50-70 g/day just before the major flare set out.

Thinking about how to manage this afterwards. I was wondering if anyone takes LDN or Wellbutrin here and how they feel about it? Has anyone noticed benefits of vitamin E or rutin supplements?
Posted 10/7/2016 8:23 PM (GMT 0)
I am sorry you're struggling. I think you need to be patient and try to think positive, perhaps after you taper off, you will get back to normal and manage well with your diet. I think a lot of the awful things you describe are side effects of the prednisone. I had exhaustion and also insomnia at the same time, pounding heart, sweating constantly, I gained tons of weight, felt awfully depressed, skin broke out... It's a terrible drug, a very useful one in some cases, but terrible when you're going through all this. I was depressed enough from the UC, but the side effects of the prednisone caused me severe self hatred. I have tried some antidepressants while on prednisone and it worked well for me, so far as making me less affected by the side effects of the pred. I think you're talking about using wellbutrin for the AntiTNF properties? I was a nonresponder to anti-tnf treatment, so I didn't bother with that. I would have tried LDN, but getting a script isn't the easiest, and besides, it's all just buying more time in my opinion. I wanted to be free of UC. I tried vitamin e and I didn't see any improvement. I tried SCD without luck. You should try though, it can't hurt.
Posted 10/9/2016 4:44 AM (GMT 0)
Hi globetrotter, I'm sorry to hear of your miserable flare. I know it doesn't seem like it will end but you have many meds available that you haven't used yet so keep a hopeful outlook. When I am flaring, I can't eat anything. Even water causes intense cramping and a run to the bathroom. If I could eat, I would stick with bland foods. Pretty much what's been mentioned already. Unfortunately, prednisone side effects are many times profound. Early on my disease, I never experienced them but now I gain lots of weight, have a high heart rate and insomnia. It will resolve and the good news is you will get better.
Posted 10/11/2016 5:49 PM (GMT 0)
OK, it's been a week since I'm out of hospital and I am down to 28 mg/day Medrol from 32 mg/day. I'm taking my steroid dose in the morning and I can almost feel that it wears off in the evening/night since I start to get strange low grade fever 98-99°F, sweating, chest tightness and fatigue at night/evening. I read that fever, fatigue and sweating is one of the side effects of steroid tapering. But not sure what could cause chest tightness/ mild pain on inhale (it seems that exercise/walking alleviates pain). Has anyone experienced these kind of symptoms when tapering down? Also I've noticed that my vision has become somewhat blurry.
Posted 10/11/2016 5:55 PM (GMT 0)
Sweating, fatigue, and vision issues are all associated with steroids and/or tapering. I'm not sure about the fever or chest tightness?
Posted 10/11/2016 10:46 PM (GMT 0)
But 32 to 28 is hardly a taper. You raise the question of an opposite-the clock withdrawal as the morning dose leaves your system. Possible, but also possible that it it the steroid that remains in your system interacting with being tired at end of day.

good luck with taper, and I hope the nighttime discomfort lessens
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