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coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/12/2009 2:30 AM (GMT -6)   
I have been having alot of problems with uc for a year now.  Too many treatments to list. Just started remicade going to second treatment in the morning. I am having alot of problems dealing with pain in lower back and sides, all the meds are driving me crazy. Any sugestions would be helpful.

PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/12/2009 3:19 AM (GMT -6)   

Dear C

Hi First of all I would like to welcome you to this forum, which I must say is of great help to the members.

In so far as your issue of UC is concerned, I would like to inform you that there have been lots of treatments in this field and one treatment may hold good for somebody but may not suit the other. However, one should be never loose patience. As it is the will power which cures you and not the medicine alone. As has been said by our Father of Nation - Mahatama Gandhi "Strength does nto come from physical capacity. It comes from an indomitable will. " Strength does not come from winning. Your struggles develop; your strengths. When you go through hardships and decide not to surrender, that is strength. So be cool. Do not take any stress. We are there to provide all kind of assistance to you any time of the day. cool


45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/12/2009 3:25 AM (GMT -6)   
As you have just been diagnosed with UC, we suggest that you may try some alternate medicines/treatments before going on for stronger ones. I had tried fresh home grown turmeric. I used to eat it first thing in the morning - empty stomach. It is a very good healer and antiseptic and creates a lining/insulation on the intestines, which prevents the bleeding, pain and mucous besides saving the colon from food allergies. I had also tried Sallaki - Bosenwalia - an ayurvedic herbal based medicine. It did lead to remissions. How acute is your UC as per the colonscopy.

45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/12/2009 9:29 AM (GMT -6)   
thanks to all for the welcome                                                                                                                                            I have severe uc affecting my whloe colon. Dont know if remicade will work no change after first infussion. Really hoping second infussion is the charm. Can't stand the steriods. Willing to try anything because dont wont to do surgury at 35. Go back to doc on wednesday to see if second infussion helps.Had a really bad last year due to 8 kidney stones, 4 removed and passed 4 what a battle. Doc thinks stones are due to uc, but mother has a history of stones. Starting to think about surgury, tired of the pain and the pain meds

PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/12/2009 10:46 AM (GMT -6)   
If you become sick and patient, one thing you should never loose is patience. Patience is the greatest virtue. Please copr. have patience. Don't get disheartened. The more tense or stressful you become, the more severe it becomes. The first thing to be hit by stress is the colon and not mind. So be cheerful. Relax. Meditate - Deep breathing. We have to find a solution to your problem and not aggravate it by loosing patience. Do you know that your immunity goes for a six if you are stressed out. The recovery becomes more difficult as the stress relates to more bile juices in the colon which do not permit the medicine to show result. So cheer up. We all are here with you.

45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/15/2009 3:21 PM (GMT -6)   

Well you will never belive it, no better after second infussion. Going to doc wed to see what is next.Hope for something that will help because living on pain meds is no fun. Family suffering due to me. Sure hope there is help fore me out there somewhere.

 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/15/2009 8:42 PM (GMT -6)   
Sometimes Remicade can take up to 5 infusions to work; it took me 4 infusions and the right combo of rectal meds to finally get remission.

Are you taking any probiotics? They've never made much of a difference for me, but they do help a lot of people.

Even if you are thinking about trying Remicade for longer, it still may be helpful to talk to a surgeon; they can tell you about the surgeries and answer any questions, so at least you have a contact if you ever do need surgery.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/16/2009 10:20 AM (GMT -6)   
The doc has me still taking prednisone but took me off all other meds. I am going to try to see doc today.  

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/16/2009 10:24 AM (GMT -6)   
Don't give up on the remicade yet.  It took me 3 infusions to see a difference.  But I also stayed on all my meds while doing that.   Most important is the rectal meds.  Those really help get you over the hump.  Why did the doc have you stop all your other meds?

Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid
Status: Remission!!


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/16/2009 10:41 AM (GMT -6)   
I dont know why to stop other meds, i just follow his directions. I think he feels remicade is the answer. He also talked about a self injected med, but wanted to try remicade first. I have to find something that will work. Uc is so bad right now i cant go to work. My back and right side hurt so bad cant do anything without pain meds, and boss don't want me on the job taking pain meds. 

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/16/2009 10:51 AM (GMT -6)   

Ask your doctor to put you back on the rectal meds.  For many that has been the life saver.  Myself included!  The injectable that he is talking about is Humira.  Similar to remicade.

What meds have you been on in the past?


Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid
Status: Remission!!


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/16/2009 11:12 AM (GMT -6)   
I was on alot of meds when it all started, but here are the ones i can remember
colazal  no help
entocort  no help
lialda no help
mesalamine helped a little
now on:
predinsone
nexium
multivitamine
imodium
tramidal for pain

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/16/2009 11:30 AM (GMT -6)   
How long did you give each of these things to work before you switched to the next one?  Colazal and Lialda are both maintenance drugs.  No matter what else you are taking - you should probably still be taking those.  Unless the reason you stopped is because they caused you side effects.  Otherwise - if you stopped just because they didn't make a dent in your symptoms - you should probably still be on them - in conjunction with the Remicade and Rowasa enemas (mesalmine enemas).  If I were you I would speak to your doctor about adding back either the Colazal or Lialda, and also the Rowasa enemas or Colocort enemas (steroid enemas).   I wouldn't decide to stop Remicade based on 2 infusions.  These things take time to work.  Maybe even try 2 enemas a day on in the morning and 1 before bed.  Does your GI specialize in crohns and colitis?  If not - it might be time to switch to one who is more familiar with the disease. 
Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/16/2009 3:08 PM (GMT -6)   
Thanks for the info. Still trying to see doc today. The meds I listed were all trials to try to get uc in remission, most by my first doc. He was in with a team of doctors at the first office I was seen, after colonospy the team said I had the worst case of UC they had ever seen. The doc that i was seeing there was a moran. I think that my case was too much for him to handle so he did not give me the care I needed. He said that UC is not painfull, I told him that he needed to have UC for one day and he would change his mind. With that said I went that day to see a new doc as of now I think he is pretty good but time will tell.

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/16/2009 3:21 PM (GMT -6)   
Let us know what he says after you speak to him.  Remission doesn't come overnight.  It comes with the correct medications and a healthy lifestyle!

Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/16/2009 3:39 PM (GMT -6)   
Ironic thing that started me to have problems is quiting smoking, two months later health went down the tubes in and out of the hospital with UC and kidney stones. What a life style change it has been for me.

Jody
Age 34-Male-South Carolina
Diagnosed 02/08 Severe UC
Colazal Predinsone Entocort Lialda-No Help
Mesalamine-Little help
Remicade-Second infussion-still no change


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/16/2009 3:44 PM (GMT -6)   
A lot of ex-smokers say the same thing!  for some reason smoking seems to curtail UC symptoms.

Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/16/2009 4:01 PM (GMT -6)   
up till i quit smoking, regular bathroom visits once a day, now cant go nowhere without knowing where a bathroom is located

Jody
Age 34-Male-South Carolina
Diagnosed 02/08 Severe UC
Colazal Predinsone Entocort Lialda-No Help
Mesalamine-Little help
Remicade-Second infussion-still no change


UC Mom
Regular Member


Date Joined Jun 2007
Total Posts : 146
   Posted 2/16/2009 4:34 PM (GMT -6)   
Hi Jody. Where in SC do you live? We are in Columbia.
UC Mom
Son diagnosed 10, 2006 at age 15
6MP 100 mg. per day
Vitamin Supplements
Culturelle


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/16/2009 7:31 PM (GMT -6)   
I live in Edgemoor SC just south Rock Hill

Jody
Age 34-Male-South Carolina
Diagnosed 02/08 Severe UC
Colazal Predinsone Entocort Lialda-No Help
Mesalamine-Little help
Remicade-Second infussion-still no change


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/16/2009 10:25 PM (GMT -6)   
Mamas Boys said...
How long did you give each of these things to work before you switched to the next one? Colazal and Lialda are both maintenance drugs. No matter what else you are taking - you should probably still be taking those.


Colazal is supposed to work right away though. When I had my second flare, my condition was so bad that my GI prescribed Colazal and scheduled me for a sigmoidoscopy a few days later. He wanted to wait a few days for the inflammation to subside before trying to look inside my colon. However, he did need to look inside so that he could make a diagnosis and prescribe stronger medicine (Prednisone). The Colazal helped reduce the inflammation.

Colazal is also used as a maintenance drug, because it's not as strong as some of the other medicines that are used to treat Colitis.

Colazal no longer worked when I got my third flare so there was no reason to take it. I find that alternative treatments work so much better. I know: alternative treatments don't work for everyone; however, conventional treatments don't either. Moreover, Colazal is bad for the kidneys.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/17/2009 8:57 AM (GMT -6)   
I don't know.  My doc told me that Colazal would take at least 2 weeks till I saw any difference.  And as for continuing to take them even when they seem to stop working, my doc feels that everyone with UC should be on a 5asa of some sort - even with the heavy hitters (like 6mp, imuran, or remicade) due to possibility of colon cancer.  The 5asa are good for helping to prevent it.

Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 2/17/2009 10:18 PM (GMT -6)   
Well found out doc is sick so he upped my prednisone to 30 a day and gave me stronger pain meds. oh boy there goes any sleep I would have got. Pain is getting really bad decided to try a liquid diet, ensure and yogurt. hope that helps i can really feel the swelling now hope i can stay out of the hospital

Jody
Age 34-Male-South Carolina
Diagnosed 02/08 Severe UC
Colazal Predinsone Entocort Lialda-No Help
Mesalamine-Little help
Remicade-Second infussion-still no change

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