more bad news...

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kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 10/23/2008 7:13 AM (GMT -6)   
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.
steph - 32 - female - gold coast australia - UC since 2000
severe UC in descending colon and sigmoid colon ONLY
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
prednisolone 25mg x1 a day (ick ick and did i say ick?)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
tumeric capsules - if i remember to take the bloody things.
i still eat what i want, when i want, if i feel like eating at all :(
 
 
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/23/2008 7:51 AM (GMT -6)   
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.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Meds & supplements:  Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema every other night, Prednisone (down to 5mg), flaxseed oil, L-glutamine.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/23/2008 9:21 AM (GMT -6)   
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.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/23/2008 9:22 AM (GMT -6)   
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.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


men8ifr
Regular Member


Date Joined Jul 2008
Total Posts : 124
   Posted 10/23/2008 11:00 AM (GMT -6)   
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!
Ian

Currently in no mans land between flare and remission


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/23/2008 11:09 AM (GMT -6)   
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.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


cra43
Regular Member


Date Joined May 2008
Total Posts : 172
   Posted 10/23/2008 11:13 AM (GMT -6)   
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.

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 10/23/2008 7:59 PM (GMT -6)   
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?

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 10/23/2008 8:39 PM (GMT -6)   
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
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/23/2008 9:17 PM (GMT -6)   
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.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 10/24/2008 2:09 AM (GMT -6)   
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
steph - 32 - female - gold coast australia - UC since 2000
severe UC in descending colon and sigmoid colon ONLY
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
prednisolone 25mg x1 a day (ick ick and did i say ick?)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
tumeric capsules - if i remember to take the bloody things.
i still eat what i want, when i want, if i feel like eating at all :(
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 10/24/2008 12:51 PM (GMT -6)   
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.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/24/2008 1:52 PM (GMT -6)   
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.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/25/2008 7:26 AM (GMT -6)   
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.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/25/2008 2:33 PM (GMT -6)   
Hang in there...it will get better! :)
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


katintx
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/25/2008 3:49 PM (GMT -6)   

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.

 

 


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 10/26/2008 8:18 PM (GMT -6)   
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.
 
:)
 
 
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept

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