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In a flare and can't eat anything? Is this normal?

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Posted 1/21/2012 10:26 PM (GMT 0)
Hello everybody,

So after 15 years of no blood and no flares I am finally back in one.  Had a colonoscopy last July (as I do every other year) and Mayo told me it looked like I didn't even have UC (after thinking I did for 17 years).  They told me to taper off my Colazal and Mesalamine enemas, which I did, and low and behold the beast is back. I'm back to bleeding and had a flex sig 2 days ago. It confirmed the UC (again).  But as of yesterday, the day after the flex sig, I can't seem to eat a thing without getting horrible stomach cramps and running to the bathroom. I was able to at least while being sick the past few weeks, but now I can't even drink Ensure or have a piece of toast without feeling horribly sick. 

I never not been able to eat anything - I usually can at least have Ensure at the very least.  I started taking 40mg of Prednisone too so that only upsets the stomach more.  I don't mind the Predinose - I'll take anything to get me back to feeling like I don't even have UC. I just need to be able to eat something!

Has anybody else had this issue? I mentioned it to the doctor  yesterday and he didnt' seem too concerned, he seemed to think it would just go away. But so far it hasn't and I've barely eaten in 2 days now. I just hope I can get back to the way I was!

Thanks all, Nikki

Posted 1/21/2012 11:41 PM (GMT 0)
Never take prednisone on an empty stomach. Eat a cracker or something- it can cause stomach ulcers, cramping, nausea...

Drink some broths, nibble on bananas, rice (white), applesauce, toast (BRAT diet for diarrhea). You sound just like me,
it will go away, but you have to nibble on something.

Did your doc prescribe anti-spasmodic? He should have.

Carlie
Posted 1/22/2012 12:02 AM (GMT 0)
I take levsin but it hasn't been working.
I always eat with the prednisone, in the past I've even taken tums with it just to be able to tolerate it. Luckily this is only the 3rd time in 17 years I've had to take it.

Just tries some soup and so far ok, hopefully my body was just upset from the enema prep and flex sig. Still seems like a drastic turn for the worst right after the test day.
Posted 1/22/2012 12:17 AM (GMT 0)
MNbeachgal,

Sometime after I have a scope done I am much worse because of the prep that they give to clean the colon out.  It strips all the good bacteria from the colon. 

I would first stop the ENSURE DRINKS they have alot of bad oils in it that can make things worse.

Start or increase your probiotics.

Do nightly enemas either mesalamine or hycort to calm things down.

Eat lightly,  if you can stay away from raw veggies and high fibre things until cramping calms down.  I agree with the bananas, rice and rice products, clear broths.

Posted 1/22/2012 12:24 AM (GMT 0)
Thanks for the reply.  I actually used to take meslamine enemas nightly but stopped per the doctor's request (and then proceeded to get this flare-up).  For some reason he said he doesn't want to me to start the enemas again. I think its mostly because he feels I shouldn't be stuck my whole life taking them, although my moto has always been I don't care what medication I take if it makes me lead a 'normal' life.  So I do think I'll start those again tonight - if I can hold it in - and see if it helps.

It's strange, with the 8 colonoscopies I had only once did I have stomach pains after (mostly from eating chocolate cake when I got home :) ).  All those liquid preps the night before. But didn't have to do that this time - just had a tap water enema when I got there - and I swear that messed me up more than drinking the other preps! 

Thanks for all the suggestions. My stomach is rumbling after my soup/broth. Hopefully that's all it does!

Posted 1/22/2012 12:40 AM (GMT 0)
MNBeachgal,

I'm sorry you are having such a tough time of it.

I agree with puffedrice, stay away from Ensure, it's loaded with high fructose corn syrup and junk.

I would suggest you try making some protein shakes with almond milk, several times a day - so at the very least you'll be guaranteeing your body some much needed protein and won't be giving your stomach the work of breaking anything down.

Absolutely, add probiotics, like VSL#3.

Have they checked your blood levels of vitamins d3 and b12?

Personally I never had any luck with the mesalamines (suppos, enemas, pills), but I found that slippery elm bark powder worked great as an alternative.


 

Posted 1/22/2012 3:21 AM (GMT 0)
yeah, no matter what i eat when i am sick, it hurts. i found it's better to not eat but then you end up starving. it's a lose lose situation. the only thing that helps is getting the inflammation under control.
Posted 1/22/2012 5:45 AM (GMT 0)
I find it odd your doctor took you off the enemas and Colazal completely. Most of us stay on at least low doses of those meds for maintenance. I would absolutely add the enemas back into your routine right away...even if you can only do half an enema, sometimes that's easier. Did they start you back on your colazal as well or just pred?

Who do you see at Mayo? I went there once for a second opinion (I used to live in Decorah, Iowa, about an hour south of Rochester)

Don't worry about the food thing too much right now. When I first got diagnosed I felt horrible no matter what I ate or drank. Just try to stay hydrated at least. Hope you feel better soon.
Posted 1/22/2012 9:24 AM (GMT 0)
Docs told you to go off your 5ASA oral/rectal? Did you happen to mention it to any of us and we suggested you stay on them?

Why aren't you on them at this point rather than the pred?

Regarding food.....just eat. Maybe a boiled egg, light toast, fish, chicken, rice, whatever you like to normally eat.

Ensure...ugh, although that's a personal thing...I wouldn't ever be drawn to drink it.

q
Posted 1/22/2012 11:08 AM (GMT 0)
Just eat????
I know how you feel. I ate nothing for a week before I was diagnosed. I would rather starve than go through the pain! Even pethadiene shots werent working Ended up in hospital on a drip with severe dehydration though. Started me on IV pred and was able to eat about 3 days later somewhat pain free. I agree that you need to get the inflammation under control before the pain will subside.
Antispasmodics didn't do much for my pain either. Only thing that worked was endone which a lot will say is a no no but hey it worked for me.
Good luck and hope you're feeling better soon!
Posted 1/22/2012 6:09 PM (GMT 0)

Sarah, I see Dr Grover at Mayo.  My initial appt was actually with Dr Tremaine and Dr Grover was shadowing him at the time.  They had me come back a few months later for a colonoscopy and seemed to pass me off to Dr Grover at that point. I had some skepticism - I specifically picked Dr Tremaine because he was one of my brother's doctors 15 years earlier. The doctor I originally had at Mayo 17 years ago is no longer there I guess.

The reason they took me off the enemas and Colazal was the colonoscopy showed no signs of ever having UC.  I thought it was strange as Mayo is the one that diagnosed me with it 17 years ago but figure hey, this is Mayo, they know what they are doing right?  They suggested I stop the meds and see what happens, as I shouldn't be taking all those meds if I didn't need them.  Still seemed odd that I clearly had UC (alot of bleeding and a few month flare back in college when this all started), but they said they had no signs now that I had it.

Even way back then during that horrible flare I was at least able to drink Ensure (hence why I tried it now) and eat bagels with peanut butter on them - that was about it though at the time.

Quincy, the reason I stopped my meds is because the doctors told me to.  And I"m on pred because I need to get the inflamation to go away quickly - mesalamine meds won't do that for me. I know if I do have a flare, pred is the only thing that will get it under control. Mesalamine are purely maintenance meds for me.  I think the doctors at Mayo, at least the one I see, feels you shouldn't be shackled to enemas your whole life so doesn't want me to take him. But at this point I've decided to go back on them - I'd rather take those everyday then be sick.

In retrospect I find myself thinking why didn't I leave well enough alone - but the Dr care I was getting in the Twin Cities was not good so I decided to go to Mayo. I'd have having alot of symptoms without bleeding (fatique, joint pains, bloating, etc) and the drs here could never tell me what that meant.  They kept trying to put me on Imuran which seemed like overkill since I was having no bleeding and hadn't in over 10 years. Still, after having this so long I'll admit going to a doctor at Mayo who likely wasn't even in med school yet when I was diagnosed with this didnt' sit well with me.  But at this point there is no use in looking back and wishing I wouldn't have played with the meds. It's done, now I just need to get better. I can lay awake all morning wishing I was back in the 10 year long remission but all that does is depress me. I just need to get better now.

My biggest fear is I can't get back into the same remission I've had for so long, I just want to be back to where its like I don't even have this disease. It is possible! 

Posted 1/22/2012 6:21 PM (GMT 0)
Poor thing, I know how you feel and unfortunately, I find that I can't eat much when I am flaring. I ususally just have a piece of toast with nut-butter and preserves. It's not the most healthy way to eat but if I eat a big meal, I feel awful and I am on the toilet all day. How long have you been on prednisone? Hopefully the prednisone works quickly and you can eat normally again.
Posted 1/22/2012 6:32 PM (GMT 0)
Only been on Prednisone for 2 days now, I can't remember how long it usually takes to work?
I was able to hold in 1/2 of a mesalamine enema last night (thanks Sarah for that suggestion!). It didn't seem to do too much as I had to run to the bathroom first thing in the morning and still had blood. I feel nauseas now, hopefully not from the prednisone. Never had that side effect with it in the past.
Ate a piece of toast this morning and was able to keep that in me. Seems like now I can eat soup or toast and feel ok, just feel sick once the food has moved through me. So hopefully my stomach is at least doing a bit better!
Posted 1/22/2012 7:31 PM (GMT 0)
Actually the docs were wrong in taking you off the 5ASA oral/rectal. And....they can get you in remission as well, and should have you on the oral/rectal regardless.

Regarding "not wanting you to be shackled to the enemas your whole life"....geez, what does pred do for you over the long-term?

It's your butt...you had been well for a long time, too bad that was taken away, because to me it was.

Still push for the oral and get refills for the rectal as well.

It's good you retained part of the enema...eventually you'll get to a full one (yes, that is a good idea to use half if retention is difficult).

Try to eat more, especially a protein. Eggs have lots of good stuff in them. Boiled or poached would be best. Small meals, but don't skip any. You'll be having bms anyway...

q
Posted 1/22/2012 10:08 PM (GMT 0)
Thanks everybody for all your advice and support. I think the moral of this story is, everybody's disease reacts differently to flares and treatment. It's so hard for me to remember how I dealt with my last major flare since it was so long ago. My body is completely different now (although I wish my body was still like it was in my early 20's!). Thanks to all the advice on here, I've decided to get back on my mesalamine enemas despite the doctor's opinion. I'm back to taking my Colazal and will switch to Lialda in 2 weeks. I'm on 40mg of Prednisone and will start tapering in 2 weeks. From past experience I've learned, at least for my body and UC, I need the Prednisone to quickly bring down the inflamation, then the mesalamine to remain in remission. I hope it all starts working soon!
Posted 1/23/2012 5:09 AM (GMT 0)
Hey there. So I'm curious what the Mayo docs told you was the cause of your joint pain, bloating, etc. if they told you you had no signs of UC? Sorry you are having to go through this. Hang in there...I'm glad you went back to the enemas. You know your body better than anyone, including any doctor out there.
Posted 1/23/2012 2:35 PM (GMT 0)
Hi Sarah, the Mayo doc told me to go see a rheumatologist for my joint pain and fatigue. He said the rest was from sigificant IBS. I still always wondered how on earth back when this all started I had so much bleeding and they clearly called it UC back then. What else could even cause those symptoms for months? Just seemed like they were brushing off the diagnosis they themselves gave me 17 years earlier. Strange.
I'm not looking forward to telling the doc I've decided on my own to start the enemas again. I need to get a refill and don't think my old doc in the Twin Cities will refill since I haven't been there in over a year.
Posted 1/23/2012 3:02 PM (GMT 0)
That is strange. I think it's from your UC, but I guess it couldn't hurt to see what a rheumatologist thinks. Don't be scared of telling the docs about re-starting the enemas...I know it can be uncomfortable but you know what has worked best for you in the past. Personally, I'd be complaining to them that they took me off the meds that had kept you in remission for so long, but that's just me. I only went to Mayo once and for me I wasn't too impressed...although I think that was just the doctor I got and I like someone who I feel is really listening to me and not rushing out of the room after spending 20 seconds with me. I have a great GI at Gunderson Lutheran in La Crosse now.

Glad you were able to hold in half the enema! They take time to work so be patient. They can take several weeks before you see much improvement.
Posted 1/23/2012 3:15 PM (GMT 0)
Thanks Sara! Strangely enough I was able to keep in a whole enema last night and am feeling much better today so far. The meds seem to be kicking in. Definitely another reason to tell the doc I'm taking the enemas and just want to get back the way I was for so long.

And the search for a good doctor continues!
Posted 1/23/2012 3:40 PM (GMT 0)
That's awesome! Hope you continue to improve.
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