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Mikepika
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/19/2008 10:43 PM (GMT -6)   
I have had ulcerative colitis for about 4 years now, it has been bad, but now its getting worse. I am currently taking 6 pills 3 times a day of colozal and each night taking an enima. I am lactose intolerant, gluten intolerant, but still having bleeding. I don't see what else i can do-there's not much left i can eat, and the medicine i take is already doubled-what should i do? My doctor presents no solutions besides getting a third colonoscopy, and after the first two didn't do much to help, i'm hesitant to get another one. Thanks

-Michael-19yrs old

---also, just got off prednisone steroids a week or 2 ago

Post Edited (Mikepika) : 12/19/2008 9:48:47 PM (GMT-7)


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 12/19/2008 11:15 PM (GMT -6)   

Michael, I would probably look for a new gastro first of all, someone you feel you can trust.  Are you currently flaring, or did the steroids stop your flare?

Good luck, and welcome to the site.

 

-------------------------------------------------------

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily to remain in remission 


Asia
Regular Member


Date Joined Aug 2005
Total Posts : 188
   Posted 12/20/2008 4:41 AM (GMT -6)   
Wow, it really sounds like you need to find a new GI. Doesn't sound like your current one is doing a good job.
When was your last colonoscopy? And did the steroids help when you were on them??

Suffered for my whole life before being diagnosed.

Told to "Eat more fibre "



Currently on:

Salofalk
1500mg x 4/day
Entocort 6mg once a day Completely off as of 10/21/08. Took 2 years!
Imuran 150mg once a day


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 12/20/2008 8:02 AM (GMT -6)   
Hi and welcome to HW :) I'm sorry that you're feeling "crappy". Uc is no fun at all. What is the extent of your Uc? Have you tried rectal meds? Please tell us more of your Uc history so we may be able to help you more.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 12/20/2008 9:13 AM (GMT -6)   
     Hi Mike,
           My GI doctor will not perform a colonoscopy while I am flaring, so I would look for another gastro doctor.   However, when I was hospitalized they did do one.  They just wanted to see how far up the UC traveled.  Mine is confined to the rectal area so I assume it is just ulcerative proctitis.
           Your Colazal dosage seems a bit high, but it may go according to body weight.  My doctor has me take 9 pills a day when flaring.  Did you try Cort enemas?  They work pretty well.  When flaring I had a bit of a problem retaining them so the doctor prescribed Canasa suppositories.  Is your GI doctor aware that your condition is worsening?  My last flare, which started in April of this year, lasted for seven months.  I, like you, had a hard time getting off the prednisone.  Whenever I was weaned off I was only able to enjoy two weeks of remission before relapsing.  The last relapse the doctor increased my initial dosage of prednisone to 40 mgm of prednisone instead of 30 which he usually started me.  My taper was 10 mgm a week until the final week which was a 5 mgm taper.  I believe the 6MP finally kicked in too which led to this remission.  Ask your doctor about the 6MP.
          Good luck to you.  Oh and one more thing...I don't know what your diet is like, but while flaring it is best to follow a low residue diet.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 12/20/2008 10:17 AM (GMT -6)   
I know the gluten free diet is hard. But there are stuff you can eat. You just have to look for the products and read the labels. Hardest part is if you want to eat out. Burger ( on a plate ) baked Pot. Are always good options. At home I eat oatmeal or eggs for breakfast. Lunch is normally potato or brown rice. Dinner is normally meat and veggies and or potato. You just have to be inventive with your cooking. I have even found gluten free pasta, made with rice. I also found rice flour. So I have made blueberry crisp with it. or apple crisp. You just have to be inventive.
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 12/20/2008 10:27 AM (GMT -6)   
I think you need to find a new GI. The first GI I went to wanted to do a colonoscopy. Luckily, it turned out he didn't accept my insurance. The second one said a colonoscopy was out of the question. He did a sigmoidoscopy, and even then he didn't get very far up the colon. He performed the colonoscopy later when I was in remission.
Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06

-------------------

Lexapro (for stress)
Probiotics (orally and up the but)
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 12/20/2008 10:39 AM (GMT -6)   
I agree that you should find a new GI. What kind of enema are you taking? If steroids and Colazal aren't doing enough, you might need to try a stronger med like 6MP or Imuran.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 12/20/2008 1:27 PM (GMT -6)   
The Colazol dose seems too high, and if you are still bleeding, it isn't doing the trick. I agree with the other posters. No Colonscopy for now if you've had one in recent history. A good GI can tell what is going on from your symptoms. During the time the steroid was being weened, they probably should have done blood work and started you on 6mp or one of its cousins. Doesn't sound like you've been in remission. Start reading the posts around here. They will help you bring info and good questions to your doc. I think a new doctor at a center of excellence/teaching hospital is the way to go. Call today, as getting in takes time.
Good luck,
K
Daughter,15 diagnosed 1-08 w/ UC .
Asacol, Prevacid, Flagyl, Prednizone 50mg, major flare, now off!, Hosp. four x this yr. Low residue diet still, an
6MP, Colazol ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Cortafoam enemas 4xweek
Trying probiotics, fish oil, and Mangosteen for kicks.
update:
Had 3rd infusion of Remicade, and still on all of the other drugs, except Flagyl and Pred. Better, not healed. In a drug trial for children. In an 'iffy' state-- on a flare's edge.


Mikepika
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/20/2008 3:12 PM (GMT -6)   
Thanks for all the responses :)

Had the second colonoscopy around 2 years ago

Now on rowasa enima and 18 pills a day of colozal

Steroids helped a lot, but 2 weeks later it started up again

The GI knows the condition is worsening, and has only suggested colonoscopies after blood tests (which came back normal)

Have been eating very carefully, which makes me even more upset when it doesn't help

Thanks again

quincy
Elite Member


Date Joined May 2003
Total Posts : 30587
   Posted 12/20/2008 4:55 PM (GMT -6)   
Hi..it could be that you're on too high a dosage of Colazal...never heard of one being on 18 colazal...

did you start at 18 or increase from a lower dosage?

Are you using the enemas nightly?

When did you get off pred?

Welcome to the forum.

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Mikepika
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/20/2008 6:31 PM (GMT -6)   
He doubled me from 9 a day to 18 a day when i was getting bad last year

yes every night, but sometimes i forget (not often)

got off the pred around 2 weeks ago

thanks!

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 12/20/2008 6:40 PM (GMT -6)   
Colonoscopies are not treatment!
It sounds like you need to get back on the steroids, if they were working. You have gone off them prematurely, perhaps.
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 powder at first, now Forte pills. Doing much better, but still having some bad days. 


ElizaLily
Regular Member


Date Joined Dec 2008
Total Posts : 34
   Posted 12/21/2008 11:16 AM (GMT -6)   
You may be in an appropriate situation to get into the Golimumab study. I'm in it (without any benefits yet, but hopeful). It's for someone who is flaring - speak to your Doctor- or your new Doctor about it. Good luck!

43 year old female
Diagnosed age 18
Salofalk
6MP
Golimumab study

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 12/21/2008 11:55 AM (GMT -6)   
You're taking twice the amount of Colazal that's normally prescribed. That can't be good, at the very least it's a huge expense for you or your insurance company. Have you used any other meds besides steroids? Usually if you've tried all of the 5-ASA drugs (Asacol, Colazal, Pentasa) they try an immunosuppressant next - 6-MP or Imuran. Beyond that there is Remicade, Humira (still in final stage trials) and the various new study drugs.

You probably are due for a colonoscopy, but it would be better to wait until things are a bit under control, if possible. Remember, the scope is used to see what and where the problems are, not to treat them. It can also protect you from colon cancer by finding pre-cancerous lesions.

I agree that you need to get a second opinion from a qualified GI, and you may well want to consider changing doctors. Seems like yours isn't treating you aggressively enough. And it's unusual for someone to need a diet as restricted as you say yours is, so proper treatment might allow you more dietary options.

Good luck, and welcome to HealingWell.
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.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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