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Ulcerative Colitis
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Posted 10/23/2008 12:13 PM (GMT 0)
well, finally saw my doctor (gp) yesterday for colonoscopy results (from last thursday) and the news is not good.

the only good news is that my whole colon is not affected.

it is only in the descending colon and sigmoid colon... not the rectum or rest of colon.

bit weird doc said that the rectum is fine... they're not sure whats going on there.

but... the bad news...

i have "florid" confluent left sided colitis.

i didnt know what 'florid' meant, so i asked doc and he said that is the 'worst' word they have for it.  it cant get any worse in that spot.  it means that there is absolutely NO LINING left there.

the confluent means its not patchy and is affecting the entire area. 

it is very severe.

and, get this, 'im gonna be in a lot of pain'... sheesh, tell me something new please.

ive starting involuntarily puking when i go to the toilet due to pain being so bad.  good fun.

had a burrito tonite and half hour later had to run to the toilet and vwhalla!  up came the burrito into a nice old grocery bag that i have stashed by the loo.

just proves that its not the food you eat that makes UC hurt right away.

its anytime you eat and you salivate to digest the food that the colon gets 'moving' to make room for new stuff on its way. the pain is from the food eaten ages ago and needs to exit.

been given 25mg of prednisone and starting pentasa tomorrow (through both ends)  ..suppositories and granules.

i guess we'll see how it goes.

doc said it will be hard to heal if things keep passing over the 'florid' area, but how do you stop that? impossible.  like rubbing an open wound so it cant scab up.  great!  this is gonna be fun.

Posted 10/23/2008 12:51 PM (GMT 0)
Steph -

I am really sorry to hear that your UC is that bad. I'd never heard of florid confluent colitis before now. I hope for your sake that you can find something to provide relief soon. Did your doctor have anything positive to say, or did he just stick to the depressing news?

At least you still eat what you want, when you want...even if you don't want to. More than I can say.
Posted 10/23/2008 2:21 PM (GMT 0)
25 mg. of pred sounds like a pretty low dose for someone with severe inflammation. Most GI's start at 40. If you don't get relief, you may want to talk to your doctor about this.
Posted 10/23/2008 2:22 PM (GMT 0)
You can try a low residue diet for a while to see if that helps you heal. A low residue diet will not make the colon work so hard and it will be easier to digest which in turn allows it to not "rub" that affected area as badly as other harsher foods. Also too a bland diet may help your nausea.
Posted 10/23/2008 4:00 PM (GMT 0)
If it were me I would try fasting for as long as I could stand to try to get the colon to heal. I've done it in the past a couple of times when i was starting to flare and it helped (me) both times. it's hard though but doesn't sound like you are enjoying food anyway. The first time I tried a water fast for 2/3 days which wasn't brilliant as work due to headaches (despite a lot of water intake) and feeling lethargic. If I could have slept through most if it it would be a lot easier! Anyway this seemed quite effective - I followed with a low residue diet for 4/5 days but I think I did this too long as when I did have stools they were large and hard and I think didn't do any favors pushing them out.. (don't know how else I explain that...) The second fast (at a much later date again when I was starting to flare) i tried a jiuce fast with also tea coffee and glucose - the idea being nothing solid but keep my energy up. This was far easier energy wise able to work etc no problems and still beneficial but not as good as the water fast I thought (but still worth it). If I get bad enough next time I may try a water and glucose only fast this should give me enough energy but be more 'dissolvable' than juice and tea/coffee fast where I was still having stools. The only problem is water and glucose won't taste that good compared to fruit jiuce and tea/coffee!
Posted 10/23/2008 4:09 PM (GMT 0)
Not eating makes me feel and bleed worse. It my gut feeds on itself (although I know that's not true).
And juice and coffee are irritants, generally. So be cautious!! I agree, low fiber, low residue.

And that dose of prednisone is really low for your condition. I'd be looking at those injections, but have no personal experience.
So sorry you are suffering so. I feel your pain.
Posted 10/23/2008 4:13 PM (GMT 0)
One other thing you could try that helped my son, was drink chicken broth,  beef broth,,, put some V-8 juice with it.

Drink juices, like apple juice, grape juice.  NO ORANGE JUICE

and lots of water.  That way there is nothing to digest and you stll get vitamins you need and nourishment.   Hopefully you can let the colon rest and it will not have to work hard and get aggravated.  Do the liquid diet as long as you can.  The longer the better.    I also agree that that is a low dose for the Prednisone.  When my son has a bad flare, he starts out with 60 mg. and then tapers for 2 months.  So far he hasn't had a bad flare for over a year, but still goes about 6 or 7 times a day.  Kinda loose, no blood though, very little bit of cramping.

His is just on descending colon and rectum and is hoping to be approved for Remicade treatments very soon.   good luck to ya.

Posted 10/24/2008 12:59 AM (GMT 0)
Just me, but I'd be careful with the fruit juices. They can make anyone with a healthy bowel get the runs if overindulged. Drink lots of water. I'd cut grains, and all sugar. Burritos would not be on my list of things to eat. Sounds like you may need to give your body some tough love...eat only foods that have nutritive value (no processed foods) so you can heal yourself. Eat to live, not live to eat, at least for now. Easier said than done, I know. Have you tried the SCD or Maker's Diet, or an antifungal diet?
Posted 10/24/2008 1:39 AM (GMT 0)

kazygirl said...

doc said it will be hard to heal if things keep passing over the 'florid' area, but how do you stop that? impossible.  like rubbing an open wound so it cant scab up.  great!  this is gonna be fun.

Another option is to put yourself on an elemental liquid diet. It allows you to get the nutrition you desperately need while still allowing your colon to rest and heal. You can check it out here:

http://www.holistichealthshoppe.com/astragalus.php?id=6#7

Posted 10/24/2008 2:17 AM (GMT 0)
Odd, if there was absolutely no lining left there then you'd think it would pretty much be an open hole leaking feces into your system where it shouldn't be and you'd think he'd have you in the hospital with a TPN and giving you some extensive treatment to try and heal up the area as much as possible.

:)
Posted 10/24/2008 7:09 AM (GMT 0)
well, the wall of the colon is still there, but the mucosa lining is all gone. like the lubrication part or whatever.

i think im gonna try drinking resource fruit drinks and ensure. since those are meals in a glass. the resource are complete meals and are in little juice boxes. gonna order some and see.

funny thing is.. i do not feel as awful as my bad flare a year ago. that was way worse. but this is just beginning so we will see.
my psoriasis is already gone from the pred. so thats a bonus since its summer here.

i just spent the day walking around indy races over here. im not having the urgency to go 100 times to the toilet and seem to always find one nearby when i get the shivers.

im taking the pain meds regularly so as to avoid the pain coming back. doc said to keep it away is important, cuz once it comes back, i gotta get rid of it again.

i will talk to doc about pred dose. last time i was on 60mg rather than 25mg.

anyhoo.. i have to run to the can now, so i will be back.
thanks for the good words and advice
Posted 10/24/2008 5:51 PM (GMT 0)
I'd encourage you to check out the link I posted above for Absorb Plus as an alternative to Ensure. It's predigested and developed specifically for people with IBD. Ensure isn't and is full of sugar and unhealthy fats.
Posted 10/24/2008 6:52 PM (GMT 0)
Yes, even things we drink can lead to a bad reaction if it's chalk full of garbage it will have a negative effect and exacerbate symptoms just like some foods can.

:)
Posted 10/25/2008 12:26 PM (GMT 0)
I have to agree about the Ensure. A few years ago, I was trying to gain some weight so I added Ensure to my diet. I was doing fairly well meaning I wasn't going to the bathroom 10xs with D, more like 3-4xs with D at the time. I started drinking Ensure and wouldn't you know it, I started having bad cramps, nausea and increase D back to 10+xs. And once I stopped drinking it, I went back to my semi balanced state. So be careful of any nutritional drinks by reading the ingredients - try to avoid the sugars since it may make you worse.
Posted 10/25/2008 7:33 PM (GMT 0)
Hang in there...it will get better! :)
Posted 10/25/2008 8:49 PM (GMT 0)

sorry to hear you are having a rough time.  i am new to the site and have been looking for others that share my disease.   i was diagnosed at the age of 20 with uc.  i was 6 months pregnant when diagnosed.  my flareups were usually treated with steroids and rowasa.  i have been feeling pretty good and full of energy when i was hit with a stomach pain that made me hit the floor.  i was rushed to the er-all i remember is waking up one week later in icu.  my bowel bascially exploded-now i am a proud owner of an ileostomy.  i was told this could not be reversed.  i finally went home after 3 weeks in the hospital only to end up back in the next day with a blood infection.   i again went home after 2 weeks in-and on home antibiotics-then again back in after being home only 3 days with a blood clott in my right leg and lungs.  i am now a proud owner of an ivc filter-this prevents anymore clotts from my legs to go to my lungs.  i was told that i was very lucky.  the reason my bowel busted open was from an erosive ulcer in my colon.  i only have a stump left which has to come out soon.  i am not in any hurry to have this done.  i fatigue easily and get short of breath with activity. i am back to work after only three weeks of being home.   i have started exercising again-this is a slow process.  i worked out the morning before i got sick.  this disease sucks-which i am sure you are well aware of that. 

ii guess what i want to say is-hang in there and stay on top of your uc so you are not caught by suprise like i was.  be sure your dr is taking care of you and meeting your needs. 

i would love to hear from you.  btw-i will be 50 next month.

Posted 10/27/2008 1:18 AM (GMT 0)
katintx - welcome and sorry to hear u went through the ileostomy route the hard way.

steph - sounds bad. hope you get the doses right. i have only ever been on 25mg oral steroids and they never seemed to affect me. maybe the specialists are more conservative in oz. anyway - rightly or wrongly i tried 40mg and have felt a lot better in fact so much so that i am wondering if i am doing the right thing going for the op. anyway i feel that on balance i should still go ahead. the fact that there is a WOW expansion has nothing to do with the decision.

:)

 

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