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How on earth can you get 2000 calories a day in your body? (RANT/PLEA)

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Ulcerative Colitis
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Posted 9/22/2008 1:59 PM (GMT 0)

Hello Emory...what is making you nauseaus? Is it the Lialda? I am diagnosed with ulcerative proctitis (about one inch). I called my Dr. crying last night because I have had so much blood. BOOM - wants to put me on prednisone. I am refusing it! Unless they cart me away to the hospital.

I took Quincy's advice and am doing canasa in the AM and then at lunch and then going to do the cortenemas at night.

I am soo lost, depressed and scared right now.

Emory - with your proctitis....does eating scare you because the poo makes you bleed? I swear I am thinking of doing a liquid diet.

Posted 9/22/2008 2:01 PM (GMT 0)

I slept so good last night until 1:30 and then again until about 6 which is great.  I experimented by using a Canasa (which I had left from early treatment) instead of the Rowasa - mainly because my butt is sore.  Don't know if that has anything to do with sleeping better or not.  Feels good when you can sleep all night.  I have an overactive bladder so I have to get up about 4 times anyway most nights - but if I can get right back to sleep I don't mind!!

Good luck today!

ElaineNY

Posted 9/22/2008 3:47 PM (GMT 0)
Elaine, glad to hear you slept so well! Hurray!

WishfulMA, I haven't been nauseous for about a week now. When I was, I think it was a combination of Lialda, my period, and anxiety. You and I have about the same degree of proctitis. Isn't it crazy that such a small area can cause so much pain and trouble?

My new regime, which I've been doing since Friday, seems to be helping: hydrocortisone 25 mg in am, 2 heaping teaspoons of orange smooth texture Metamucil (NOT sugar-free) in 16 oz water in the evening, and Canasa at bedtime. I was a little constipated for a day or so, but starting last night, my BMs have looked almost normal, and I'm seeing very little blood. Friday i was turning the toilet bowl red.
I see you're on a very similar regime -- Quincy's advice to you, as usual, is fantastic. Maybe you should ask your doctor about adding Metamucil. My doc said it might be the most important part of my regime. If I had to do it again, I'd probably start slower with 1 tsp, working up to 2.

No, eating doesn't scare me because of the blood. I don't think many foods cause bleeding, except those that are hard and scrape against the fragile colon wall (popcorn, nuts, raw carrots...). My understanding is that foods cause other symptoms like abdominal pain and diarrhea. When I was having trouble eating, it was nausea and actual food revulsion. That said, I was scared to eat for a while because it seemed like everyone was giving me different advice on what to eat. Now I'm just following my own instincts, keeping it pretty bland and soft, but eating things like dairy products again. It helps that I was tested for lactose and gluten intolerance, and both were negative; that made me feel more free about eating.

I'm so sorry you're feeling so scared and depressed. I can definitely relate! You've probably noticed the number of medicines I'm taking for sleep and anxiety in my signature. I don't necessarily recommend them (clonazepam especially can be hard to stop taking because your body gets habituated really quickly), but they are allowing me to cope. And I don't think I can get my proctitis under control while my insomnia and anxiety are running rampant!

Is your acupuncturist treating points for depression and anxiety? If not, ask about that at your next visit.

Try to be patient with your treatment. My doc said to give this new regime at least a couple of weeks, and not to worry too much about the blood.

Take care, WishfulMA, and trust that we will get through this --
emory
Posted 9/22/2008 3:56 PM (GMT 0)
Thanks for writing....Try to be patient with your treatment. My doc said to give this new regime at least a couple of weeks, and not to worry too much about the blood."
Last night I used the Canasa suppository instead of Rowasa because my butt is sore and Canasa is kinder.  BUT, the third BM this morning was almost all red blood and little stool/mucous.  I haven't seen that for weeks.  It is discouraging.  I will call NP only if it gets worse in a few days or ? I was nearly perfect when I had to stop Colazal and Rowasa for side effects - good for two weeks but, of course, I knew I had to have something to stay that way - so far this is not working out too well.  I suppose immunesuppresants or predisone next (maybe steroid enemas).  I can't have knee surgery taking any of those but then again I can't have knee surgery in this condition either.

I truly hate this - too old for this - what did I do to deserve this.  I honestly felt better before all the meds - just went for colonoscopy because of blood and mostly afraid of cancer.  I do have IBS but dealing with that for years is like second nature. 

Oh well, we will get through this- we will get better.  I don't need to be perfect - just better -

ElaineNY

Posted 9/22/2008 4:47 PM (GMT 0)

I just started eating the metamucil wafers every morning with 16oz of water. Would that be compared to the heaping tablesp you are taking or should I switch? What is the point of taking metamucil? Is it to make your poo harder? I woould think I want it to be softer so it slides past all the bad areas in my rectum.

I recently got off my lexapro but have taking klonopin in the past and now i am taking valium to sleep.

Its good to hear that food doesnt cause PROCTITIS. I too stopped eating gluten products. Then went back. Then I was staying dairy free - now I am back. Its a fine balance. I know that eggs kill my stomach. I guess a food journal might be good.

I am going to see my Dr. on Friday. Again, I am not going to take PREDNISONE just so I can be fine for 6 weeks and then bleed again.

I am taking VSL#3 and noticed not a huge difference. Might switch to primal defense or cultrelle.

Emory - what is the hydrocortizone 25mgs?? Is it like my enema at night??  And who should do a food allergy test for me like you  had?

Posted 9/22/2008 5:26 PM (GMT 0)
Flaring is such a pain in the butt, isn't it?  I notice that trying gluten free, and low residue are popular methods of altering diet.  I tried both of those in my efforts to get out of my current flare.  As far as I could tell, all either did was get me eating bland food, and not much of it either.  I think that is what helped more than staying away from gluten products.  I'm still avoiding most gluten products, but the reason for that is it greatly reduces my food options, which is a good thing right now.  I started on prednisone a couple of weeks ago despite my efforts to avoid it, and lawdy, lawdy, that stuff gives me the munchies!  I've been eating lots of rice crispies w/ soy milk, and home made stuff like banana bread to prevent myself from ballooning out.  I have noticed a great reduction in symptoms lately, less blood, mucous, cramping, etc, but based on past experience that is the prednisone helping more than my diet.  Prednisone works as a wonder drug for me, gives me a stomache of steel, but I hate the side effects.  Fixes one problem, causes five others.

Emory - Glad to hear that you are finally getting some relief.  When you got the second opinion, did you ask the doc to refer you to a trusted colleague of his?  I'm not sure what part of MT you are in, but I do know when I lived in WY, the choice of doctors wasn't the greatest.  I had to do a lot of looking around before I found someone who I not only trusted, but who wasn't totally clueless about UC.  Hopefully you can milk the retiring doc for everything you can before he goes on permanent vacation.  Do you think the acupuncture is helping relieve some of the depression/anxiety symptoms?  I might be interested in trying that.  Have to see what my insurance will cover though.

Posted 9/22/2008 8:46 PM (GMT 0)
Oh, Elaine, sorry to hear about your setback. I hope it will turn out to be just a blip on the road to remission!

WishfulMA, I think the wafers are comparable to what I'm doing. The Metamucil is supposed to bulk up your stool, not make it hard, so I don't think there's anything to worry about there. The hydrocortisone 25 mg suppositories are basically hemorrhoid suppositories -- just a low-dose steroid where very little is supposed to get into your bloodstream (and believe me, I've asked just about everyone, pharmacists and doctors alike, about that). I had my test for gluten and lactose intolerance done by Prometheus, but they were very expensive -- $600 -- and I don't know how high their accuracy is. Maybe ask your doctor his/her opinion.

And yes, Brandon, flaring is a pain in the butt! (very punny) I didn't think to ask the second opinion doctor for a referral; I know his partner is also retiring. I'll try to do so when I check in with him again; great suggestion.

I do think the acupuncture is helping with both the colitis and depression/anxiety/sleep -- but it's NOT covered by my insurance, and at $70 a pop, I won't be able to go too many more times.

Best to all,
emory
Posted 9/22/2008 10:53 PM (GMT 0)
Talking about the Metamucil, have any of you tried the fiber capsules (not the hard tabs)? I've been using the capsules pretty regularly for years with good results. You can get them pretty cheap in generic form at Walmart or by bulk fiber supplement and get empty gel caps at a health store and make your own capsules. I'm not keen on the drink mixes, but I've also tried the Miralax stuff, which wasn't bad, but after my last c-scope prep, where I had to down an entire bottle of it, I don't want to mess with that stuff again!

Wishful, I don't think a liquid diet is going to help with the bleeding. I was practically eating nothing, and drinking my meals for a week, and never saw the blood in my stool go down. I did notice that I never had any formed stools either, just d, blood, and mucuos. The VSL#3 is tres expensive, how many are you taking a day? I didn't notice any difference until I was up to 2 caps, 3x/day. I know the pouches are supposed to be better for delivery vehicle of the bacteria, but I'm pretty adverse to those med/juice concoctions.

Kops2, I was sort of excited to be taking the "Once a day UC medication: LIALDA!" until we upped the dose and I started taking them twice a day. Still better than the 3 times a day with Asacol, but I'm trying to reduce the number of times I take pills, and when I eliminated the Asacol, I was thinking I could just take my morning pills and be done with it...that lasted about a week. I haven't noticed any side effects except my appetite was a little stunted until I started the pred. I'm not sure if it was the Lialda or simply an aversion to food like Emory had. I just didn't feel like eating anything for about two weeks. Then started on pred, and now I can't stop eating. Very annoying!

Emory, if you liked the last pun, how about this one: Have your retiring doc recommend someone who knows his crap. Or maybe you could bribe him to just be a consultant on your condition. It must have felt good to get out yesterday and enjoy the parade. We really do takes things for granted when they become common place. I felt good enough to go for a walk today along a nearby park trail that follows a creek for miles. It made me get reminiscent about my marthon backpacks I used to do...hike in 12 miles, set up camp, go climb a mountain, and make it back to the tent during a beautiful sunset. Luckily I took lots of pictures to help me remember my years of hiking, but I'm a little scared and depressed that those days are gone. I can't believe how much of a crimp in my physical activity this disease has caused. I tried a backpack on the other day, and the pressure on my abdomen from the hip belt made me have to use the loo! I will get better though, I have to. I moved to CO to enjoy the mtns, and I will get out there someday.
Posted 9/22/2008 11:52 PM (GMT 0)

Brandon - unfortunately Lialda does nothing to stop me eating - not much does.  Even with nausea I eat.  I am obese - about 70 to 80 lbs. overweight and NEED to lose some appetite. 

I loved living in Colorado too (1970 to 1973) - you will get out there and hike again - I am sure of it!!  I need two new knees so I will be happy to just be able to go to the mall and walk.

ElaineNY

Posted 9/23/2008 12:25 AM (GMT 0)
Another good pun, Brandon! I second Elaine -- don't give up on backpacking, you'll be able to spend time in the backcountry again. (I'm counting on doing so myself...)
Posted 9/24/2008 2:18 AM (GMT 0)

Interesting....instead of giving into the prednisone....I have been doing the canasa 2x a day and then the hydrocotisone enema at night...and BOOM no bleeding for 2 days. This is the first time since July that I have not bled, without prednisone. I also added flaxseed pills 2x a day.

I am wondering if I should keep up with this routine or start tapering the enemas?

I also noticed the VSL#3 is tres expensive -- I take the pills and for 60 pills it runs me around 42 bucks. I take 2 pills 2x a day. I am thinking of switching probiotics but want to make sure I switch to a comparable strength, any suggestions.

I am hoping QUINCY will read this post and give me thoughts/ suggestions on my rectal meds.

I think 2 canasas and 12 asacol is WAY too much melsamine. I will have no hair by next year.

Posted 9/24/2008 4:04 AM (GMT 0)
Wishful,

Before you start changing things around, make sure to check with your doctor. I'm not sure about too much mesalamine, but 12 Asacol is quite a few. Is the canasa a mesalamine med? Why are you taking two types of the same thing? Do you order the VSL#3 online, or does your local pharm get it for you? The store I've gone to locally ran me $57 for a bottle. This is WAY too much to be shelling out for pro-bs. If only it wasn't helping me. When I increased my dosage, I began to notice some improvement, but then I started all these other meds, so it's hard to tell what is the most beneficial. I see my doc Thursday, so I'm sure there will be some changes in meds.
Posted 9/24/2008 5:26 AM (GMT 0)
WishfulMa, Hi there...It's not too much mesalamine.  I take a 4000mg enema plus the 6 asacol...the 12 is for treatment and can be tapered eventually. 

Is your UC throughout?

how long have you been on the steroid enemas?  Which one are you taking?

The Canasa is fine to use twice daily plus the enema at night. 

Continue until you're NORMAL..and then so for another week...then taper one of the Canasa supps. See how you do.

You should probably be able to eventually taper the Asacol by one a week...once the rectal meds are doing their thing.

Regarding probiotics..you could consider Culturelle, Nature's Way Reuteri, ProBio, Natural Factors Protec,...there are many kinds to try .

I don't know about the flaxseed oil.  I don't use it.

Happy to hear you're feeling much better.

quincy

Posted 9/24/2008 6:50 PM (GMT 0)
My area is limited to one inch of my rectum. I am taking 4 asacol pills 3x per day. I am doing canasa in the AM and then at lunch and then hydrocortizone rectal suspension enema at night. Not sure how long I have used the steriod enemas. I was using cortifoam 2x a day and that wasn't doing anything. I have been avoiding going back on prednisone since August.

When you say taper one canasa...would you do that before tapering the enema?

Posted 9/24/2008 7:10 PM (GMT 0)
I did mean that...but maybe you can taper the enema instead, but replace it with a Canasa...see how that works.

Personally, I don't think you need to be on that high of Asacol...That could be contributing to "some" of your symptoms....have you discussed with your doc to taper the Asacol?

q
Posted 9/24/2008 9:15 PM (GMT 0)
I started flaring and I used to take Asacol 3 times a day, does this mean even if I get it under control with steroid suppositories that I will never respond to Mesalazine again as it's stopped working?
Posted 9/25/2008 12:14 AM (GMT 0)
how does high doses of asacol contribute to symptoms? i was taking colazal since March (when I was hospitalized) and then recently switched back to asacol because i felt i was getting no where with the colozal.

when i was released from the hosital in march (and this was for that ONE INCH in my rectum)...I was on prednisone, 9 pills of colozal, rowasa in the AM and hydrocortisone enema in the PM. I went into remission for about ONE month after tapering all rectal meds. then BOOM in june i started bleeding. Ignored it for a while. Then went BACK on prednisone in July. I tapered that because it was time for me to do my embryo transfer with IVF and was bleeding ever since. THIS past monday was the first time I stopped bleeding. ....perhaps due to the 2x canasa and the enema...who knows.
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