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turnpkegates
Regular Member


Date Joined Jan 2009
Total Posts : 185
   Posted 1/29/2009 11:02 AM (GMT -6)   
Hello all,
 
I am a 25 yr old married man in the entertainment buisness.I was diagnosed with UC in December after over a month of uknown bloody mucus stools...first thought to be some type of infection but after a colonscopy it was confirmed to be Ulcerative Colitis(Pancolotis). After leaving the hospital i was put on 40 mg of prednisone and Lialida. I have since been switched to Asacol 3 pill 3 times a day. I went about a month with no blood or mucus but in the past week i first noticed mucus and more and more the blood is starting to return. I am trying to watch what i eat but not really sure what i should or shouldnt be eatting...anyone have any ideas? and is this normal to start with the blood and mucus so soon...this disease has really got me depressed, i am really scarred i am not going to be able to go out to dinner with my wife and friends and drink some wine or beer and enjoy a night out like we used to...any one have any insight...sorry for rambling...
 
 
Jason

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 1/29/2009 11:19 AM (GMT -6)   
Hi turnpkegates, and welcome to Healingwell. This is a tough illness to be diagnosed with, and we welcome you to ramble when you need to. That's what we are here for! It might be time to talk with your doctor again about another kind of med. Many here use enemas along with the Asacol for what we say is "treating both ends." Enemas sound daunting at first but they do help with the inflamation and mucous. As for the eating part of it, all I can say is that we are all so different in what we can tolerate for food. Keep a food diary and note which foods make your symptoms worse. You might also try eating mini-meals throughout the day; that way it's easier on your system plus keeps you going. Some of my favorite foods when flaring were natural creamy peanut butter, applesauce, scrambled eggs, yogurt...all stuff that's easy to digest. Just suggestions, but maybe it will help. Again, welcome!
Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/29/2009 11:43 AM (GMT -6)   
welcome
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09**down to 17.5 mg 1/22/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 1/29/2009 12:19 PM (GMT -6)   
Welcome you will find many friends here i have.
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started Mesalazine supps 1gm 26/6/08
  Mesalazine 400mg 4 tabsx2 day
  Domperidone 10mg as needed


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/29/2009 1:22 PM (GMT -6)   
Hi and welcome to Healingwell Jason :) I believe we all go thru or have gone thru so many emotions with this disease and yes depression can be one of them. Anytime someone is diagnosed with a chronic illness, they may go thru a grieving stage. It's so easy to think about what once was and wish you can have that back. And you may still be able to do that but with a few alterations. You just have to find your away around the obstacles. Uc is a very unpredictable disease. You never know when a flare is going to strike but as long as you keep it tucked away in the back of your mind that you will flare again; that it can actually liberate you. It sounds like a warped logic but this is what has helped me cope with this disease for the past 16 years. I know when I flare again and I know how my body responds at the beginning of a flare, I know that I can be proactive in my care and stop the flare before it becomes full blown.

Definately look into using enemas. Have you ever tried these yet? Sometimes the oral medications don't reach down to the rectum/sigmoid area and that is why the enemas come in handy. They handle sigmoid/rectal flares.
 @--->--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 -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


turnpkegates
Regular Member


Date Joined Jan 2009
Total Posts : 185
   Posted 1/29/2009 1:39 PM (GMT -6)   
I have not tried enemas, are these Dr prescribed or over the counter medicines?

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/29/2009 2:05 PM (GMT -6)   
Welcome. Your symptoms will come and go, at least that's true for most. I'm happy when I'm not having any urgency, that's the worst. I poo some blood, but my body makes more and it's OK.
You'll learn a lot here about how to manage, but don't think you'll get every problem that comes up here!

For example, I've been on prednisone occasionally for decades and have no long term effects that I'm aware of, but some people get terrible problems.

I have no kids (but not because of UC) and we go out with friends a lot but none of them even know I have this. Just some situations I avoid now, like hikes or picnics where there won't be any kind of toilet. And I think we all HATE road trips!!
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 wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/29/2009 2:48 PM (GMT -6)   
The enemas are by prescription only. You should call your doc and request Rowasa which is basically Asacol in liquid form.
 @--->--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 -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


turnpkegates
Regular Member


Date Joined Jan 2009
Total Posts : 185
   Posted 1/29/2009 2:51 PM (GMT -6)   
do you notice a difference...right now i am on 3 400mg pills 3 times a day and 30mg prednisone...havent been running to the toilet, just the last few days i started noticing blood and mucus again...does thie work above and beyond the two medicines i am on...anyone have any idea of what types of food i should be eatting... i am clueless

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/29/2009 3:37 PM (GMT -6)   
I do best on low fiber. Some people say the opposite is true for them. It's very individual.

Go into the profile tab and list your meds so we can see.
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 wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


turnpkegates
Regular Member


Date Joined Jan 2009
Total Posts : 185
   Posted 1/29/2009 3:44 PM (GMT -6)   
where is that?

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 1/29/2009 3:47 PM (GMT -6)   
Go to the control panel bar, and go into control panel; then edit profile. :-)

Carol

Remicade - will have my 257th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16289
   Posted 1/29/2009 3:51 PM (GMT -6)   
You can look up low residue diet on google and find out about low fiber diets. I don't think diet effects me too much but I do try to avoid processed foods and sugars when I am flaring. I was doing really well on Asacol for about a month and now I am starting to flare up again too. I am not ready to be running to the toilet so soon after my brief break in symptoms. I do think it is normal to have these types of relapses though. I personally am not ready to jump into trying a bunch of different meds but if you feel helpless, maybe it is best that you see a GI and see if they can offer you something stronger. I see people here who can't control their UC with any type of medication. I am so worried it will happen to me.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/29/2009 5:17 PM (GMT -6)   
Can you take more Asacol? Up to 12 per day is not uncommon if you are flaring, although it's mostly a maintenance drug.
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 wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 1/29/2009 5:21 PM (GMT -6)   
     Low residue diet while flaring is best.  I was in a doozy of a flare last year.  It lasted seven months but I am finally in remission.  I did the Cort enemas but in the hospital I couldn't retain them so the doctor put me on Canasa suppositories.  They seemed to help somewhat too.  It wasn't until my GI doctor jump started my prednisone at 40 mgm (he hates me being on it and usually will just start me at 30mgm but that just didn't do the trick and I relapsed twice after tapering off), with a 10 mgm per week taper.  That along with the 6MP, Cort enemas, Canasa and Colazal finally achieved remission.  Now I eat anything but crabcakes (I think they initiated or helped initiate two of my past flares) and real spicey food or fried food.
     If you like salmon that does wonders for the gut.  I bake mine with a tad of olive oil and paprika on top.  Some people in here say pineapple helps too.  Good luck.
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.


Teebs
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 1/29/2009 6:13 PM (GMT -6)   

I know when I was first diagnosed, I was also very depressed.  As time goes on and you educate yourself and figure out your body, it will get easier.  I agree with the enemas.  It's like putting an ice cube on bee sting (at least it was for me)

Diet is so tricky.  For me my biggest problem was dairy. Any form, any amount.  The food diary is a pain, but so worth it.  Make sure you keep track in the diary how you are feeling.  Some foods don't create problems till hours later.

Good luck and this is a great place for information.


UC diagnosed in 2002
total collectomy in 8/2008
j-pouch 11/2008
awaiting reconnection


turnpkegates
Regular Member


Date Joined Jan 2009
Total Posts : 185
   Posted 1/29/2009 6:41 PM (GMT -6)   
Has anyone else noticed that the Pred or Asacol makes them extremly thirsty...since i have been on this i am thirsty drinkning and peeing all day long...any connction?

turnpkegates
Regular Member


Date Joined Jan 2009
Total Posts : 185
   Posted 1/29/2009 7:04 PM (GMT -6)   
and i drink tons of Gatorade...anyone have any problems with drinking this?
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