I just got diagnosed with UC...help!

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soundlady
New Member


Date Joined Sep 2008
Total Posts : 13
   Posted Today 11:32 PM (GMT -6)   
Hi, as you can see from my subject, I'm new to all of this and very very freaked out by the fact that since I was diagnosed (sep 15th '08) by whole life seems to be changing quite rapidly.

I have many questions and came across this site. If anyone could help, it would be greatly appreciated! It is crazy to feel so lonely and helpless even with your family and friends by your side.

I've been reading books about UC and I'm on my 1st week of Rowasa 4gm; while I find it very annoying to use those enemas every night, I seem to be doing better (no more blood so far!). I still haven't got the results from the biopsy and the doctor told me after about 2 weeks, he may change me to a pill medication.

I'm very afraid to eat anything! and for the entire week since I left from my colonoscopy I've had 2 solid meals, other than that, I've been eating baby food every day... I don't really have an appetite anymore and I think it is mostly because I'm simply afraid to eat.

What kind of pill medications are out there, I keep reading about people NOT wanting to use Remicade. Why is that? I'm not really sure what my doctor will prescribe, since he's waiting for the results.

Also, has any of you gone to a nutritionist to go on a special diet?? I read that wheat and dairy shouldn't be consumed. But the doctor said that it doesn't matter what I eat.... I'm not so sure about that....

Please, your comments, input, experiences will be a tremendous help!
Thanks!

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1198
   Posted 9/23/2008 1:05 AM (GMT -6)   
Don't jump the gun to Remicade - that's a last resort usually. Just chill out, people's UC is different from eachother - some people only show blood and mucous symptoms but can eat what they want and lead normal lives - others have it worse - you are how you feel. There is no proven link between UC and food so don't worry about that so much. You have stopped bleeding which is the first sign of remisson so you are doing well. I know what it is like to be freaked out by this.

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/23/2008 2:28 AM (GMT -6)   
Welcome to HealingWell, soundlady.

I'm glad to hear the Rowasa is helping you, and you may want to consider using it every few days even after you start oral medications. The inflammation of UC usually starts in the rectum and spreads from there when it flares, and Rowasa is very effective at treating proctitis (rectal inflammation.)

Generally the initial drug you may be given is one of the 5-ASA's: Asacol, Lialda, Colazal or Pentasa. These are all in the same family, but each is delivered to your colon slightly differently, so sometimes you have to try more than one to find which works best for you.

For acute flares, Prednisone or other steroids are often used short-term to induce a remission. These drugs are not appropriate for long-term use and the goal is always to taper off of them.

For the minority of people whose symptoms are not adequately controlled on the 5-ASA's, immunosuppressants such as Imuran or 6-MP may be prescribed. If the immunosuppressants don't control the flaring, some people will use biologicals such as Remicade or Humira. This group of medications is the newest available to us and can work miracles for some of us, but also can have some scary side effects in a small number of people.

Diet is highly individualized. While lactose and gluten intolerance are more common among people with UC, not all of us have these issues. Your best bet is to start a food diary so you can watch over weeks and months to see what foods always bother you.
Judy - Southern US 
 
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.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/23/2008 5:32 AM (GMT -6)   
Hi,
     I've had UC for ten years and in this flare since April.  Some days are better than others but I am still bleeding.   Hospitalized for ten days in May.   I was quite concerned with the bleeding but have been to my GI doctor and a colorectal surgeon and they both took a look up there and were not worried...no cancer, thank God.  I am currently on Colazal as my inflamation is located in the rectum, 50 mgm of 6MP, Cort enemas alternate nights with Canasa but since I had a bad day Sunday, I am taking the Cort enemas at night and Canasa in the mornings.  I've been on prednisone a long time with this present flare but now am off of it.  I think my system wants the prednisone back but I am trying my darndest not to go back on it.  In the meantime I am watching my diet...baked salmon for dinner past two nights. 
 
Judi explained things very well.  I am not a candidate for Remicade as I was exposed to the TB virus back in the 60's.  By the sound of things, I think you will be fine.  Try not to get stressed out as this will aggravate your condition.  Keep to a low residue diet.  GI doctors always tell you this disease is not diet related but I find that certain foods do bother me.  I stay (or try to stay) away from fried, greasy, spicy foods.  Some people cannot tolerate milk.  I drink Silk (soy milk) in my cereal.  I also have trouble with high fiber foods.  If something is listed as 5 gm of fiber in its content, I will stay away from it while flaring.
 
Everyone is different and we will all try to help you.  Good luck and stay in touch.

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 9/23/2008 7:09 AM (GMT -6)   
Hi and welcome to Healingwell :) Judy explained things very well but I just wanted to clarify for you. You will see mention of 5-ASA's here on HW. This is simply a class of medications to reduce the inflammation in the colon. The 5-ASA's are Colazal, Asacol, Lialda and Pentasa. However, there are different form of delivery mechanisms for each and all of them except Colazal are mesalamines. Colazal is a basalazide. Each med releases differently mainly depending on the PH level in your colon. That is why there are different oral meds to try to find the right one for you.

Rectal meds are Rowasa or Salafolk which are liquid enemas (as you are aware), they are liqiud 5-ASA's, suppositories which are called Canasa. And steroid rectal meds which are Colocort (hydrocortisone enemas) and Cortifoam (hydrocortisone foam). These rectal meds are usually used if the liquid 5-ASA's don't help.

As for diet, I found that while in a flare that I need to avoid certain foods. But while in remission, I can eat pretty much what I want in moderation. You need to find what foods bother you because we are all individualistic when it comes to diet. The basic rule of thumb is to keep to the "white" foods such as fish, chicken, rice etc. But once again, you need to find the diet that fits your needs. The best way to do this is by keeping a food diary. Record everything you eat and keep track of your symptoms. Food takes 12-72 hours to digest so keep that in mind. You may find a common link. For instance, lets say you eat a salad one day and the next day you have an increase of symptoms. The possible culprit can be that salad. You can try it again in about a week and see if the pattern repeats. By finding the foods that bother and avoiding them, you can allow your colon to heal faster.

Do you know the extent of your Uc yet? Meaning, how far into the colon it goes?
 @--->--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
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Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 9/23/2008 7:25 PM (GMT -6)   
One other thing to add about diet - don't starve or deprive yourself by eliminating too many foods at once. I've had UC since last November and have been flaring pretty much the entire time. The times when my symptoms were the absolute worst was when I was cutting out tons of foods. Try to eat a balanced diet and be sure to keep the food diary, as others have mentioned.
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis
Current Treament:  Asacol 1200 MG 3X daily, Cortenama 100 ML nightly, Iron 325 MG 3X daily, Zoloft 50 MG daily, Bentyl 20 MG and Tylenol (as needed).
Diet/Exercise:  Avoiding trigger foods, eating very healthy.  Yoga or walking, when possible.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa.
Status:  Flare
 
 


seg123
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/23/2008 10:51 PM (GMT -6)   
yes, definately EAT! however, i do know how difficult it is. and definately don't jump to Remicade...thats definately 2nd to last resort from surgery. Since you have just been diagnosed your doctor will definately try all sorts of treatments in order to find the right one.

Unfotunately, I am on remicade and I hate it. I've only had 5 infusions but Ive alreayd had a reaction and have developed severe anxiety.

when i was first diagnosed 5 years ago I was put on almost 24 pills a day.
some meds i have been on over the years (asacol which is very popular and i am still on, imuran(azathioprine), ive tried neuron(sp?) which is a drug that transplant patients use, prednisone which you will most likely get on at some point very helpful but terrible sideeffects, iron which alot of people take due to lose of blood.)

take some multiviatmins and Omega-3. Yogurt has also been proven to show relief since its a bacteria eater. oh and do NOT stress it definately triggers it.

Anyways goodluck!!! hope things go better for you then they have been for me!!

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/24/2008 3:17 AM (GMT -6)   
This is probably the best intro to UC thread I've seen. It is a lot of info to digest all at once, so don't allow yourself to get overwhelmed. As said many times, diet is pretty individualized, but one thing that I found very useful for myself is to keep a food journal. Of course, you have to allow yourself to start eating again. The purpose of the journal is to help you track how different foods affect you, but remember that it can take around 24 hours before you know how something affected you. I also find it useful to track my meds when making changes, but I'd say keep the journal simple to start off with. Good luck. It is tough to accept that you have a chronic condition, but you've found a great resource here at Healingwell. This forum has some of the greatest people you will ever meet, and any questions you have, any topic, someone is always willing to share their experience.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort retention fluid, Prednisone 15mg and tapering down


soundlady
New Member


Date Joined Sep 2008
Total Posts : 13
   Posted 9/24/2008 7:50 PM (GMT -6)   
Thanks so much for all the wonderful information!!!
I just got my biopsies back and just like the doctor has said , I have UC. It is Proctitis, so he decided that the course of meds for this would be Canasa after I'm done with my second week of Rowasa. He gave me the option of taking the pill or the suppository... hopefully I chose right for the suppository, since the location is so far down the colon (and he explained it takes too long for the pill to have its effect vs. the suppository in my case) -not my favorite thing to do though...

I've been slowly trying to eat solid foods, I've had salads twice this week and today, I ate some rice and chicken. Overall, I think after the initial scare, I'm starting to adjust to all of this, it is definitely a lot to learn about and honestly I have to say it has been a blessing to find this site and been able to talk to people about it openly.

Thanks again!!
Danni.

30 (almost 31) y.o
diagnosed sept 15th '08
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