Hi I'm new to the forum...And I'm kind of scared.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

ErikAnthony
Regular Member


Date Joined Oct 2008
Total Posts : 21
   Posted 10/2/2008 11:40 AM (GMT -6)   
Hi My name is Erik. I was told I have UC 3 days ago after having a colonoscopy. The biopsy is not back yet until this coming Tuesday. The GI did write that I have "inflammation throughout the colon". He prescribed me Asacol 1600mg 3xs daily. and A loe residue low fiber diet. No Polyp removal. I'm new to this I'm concerned, scared, kind of depressed about it. I been reading lots of post from this site trying to learn.
I'm 33yr old male and healthy until this. I'm guessing I had this for a while in my body, and something set it off. I have had diarrhea for 2 and half months now straight lost 10 lbs in that time I'm weak and I get bloating and bad stomach pain mostly after i eat no matter what I eat. Any feedback would be greatly appreciated.
I have to admit I don't have much trust in doctors.
Some of my major questions if anyone can help me are...

I have read asacol has bad side effects I wonder if i should stop taking it??

Because the GI said my entire colon is inflamed im guessing i have severe colitis?

How do they know it's not CD?

I'm now scared about cancer?

I don't know guys/girls my mind is stressed and it's overwhelming so i'll stop here for now and anxiously wait for any feedback.

Thanks Erik.

ErikAnthony
Regular Member


Date Joined Oct 2008
Total Posts : 21
   Posted 10/2/2008 11:55 AM (GMT -6)   
Anybody???? I was reading about the spinach/ seeds diet I'm going to start that today and hope for a miracle..

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 10/2/2008 12:15 PM (GMT -6)   
ErikAnthony said...

I have read asacol has bad side effects I wonder if i should stop taking it??

Because the GI said my entire colon is inflamed im guessing i have severe colitis?

How do they know it's not CD?

I'm now scared about cancer?

I don't know guys/girls my mind is stressed and it's overwhelming so i'll stop here for now and anxiously wait for any feedback.

Thanks Erik.
 
Don't stop the Asacol until you've given it a chance to see if it helps you. If you find your symptoms aren't improving, then ask your doc about another ASA.
 
Yes, if the whole colon is involved, that's considered to have progressed, although your symptoms may or may not be that severe.
 
In general, the pattern of inflammation is different between UC and CD. Your doc should be able to tell the difference, although some of us struggle with questionable diagnoses for years. There is an expensive test, the IBD Serology 7 test, that will tell you with almost complete accuracy which you have:
 
 
Cancer risk is a factor after you've had UC for several years. Regular scopes will allow your doc to keep an eye on things.


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.
 
 


UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 10/2/2008 12:18 PM (GMT -6)   
Hey Erik =] Im Katrina. Im a little younger than you lol but I know exactly what your going through. We all do. Welcome to Healingwell. Im sure youll get a lot of help here.
I was diagnosed with UC in March of this year. I was in my junior year of high school so things for me were pretty stressful! I was getting behind in my school work which is really important for me because these years are the ones that count for getting into college! I tried Remicade infusions and right now im taking a methotrexate shot once a week. My info will tell you all the meds im on. Anywho, dont be afraid. There will be good and bad days with UC. You just have to listen to your GI and deffinately dont stop taking the Asacol. Ive not taken it but whatever side effects it has, make sure you ask your GI before taking or stopping ANYTHING. You wouldnt think it would hurt you too much, but it will. For example, I took migraine medicine and it made me have a flare. The only thing i can take for pain is acetaminaphen(sp?)
UC can be pretty crazy somedays. Im still kinda new to the disease so im sure a lot more experienced people will come along and help you =]
Just keep your head up. Youll get through this! Like you, I have severe pancolitis. Since nothings working right, Ive decided to get surgery. Gonna try to wait til after I graduate =] But just because nothings working for me doesnt mean they wont work for you. Everyone is affected differently when it comes to having UC. Stay positive.
God Bless You =]
Katrina, Senior in high school! =]
Dx with UC March 18,2008
 
Methotrexate shot,Iron,Folic Acid,20mg Prednisone,Probiotic,Multivitamin,Calcium
                                                                    
Getting surgery since nothings working right..dont know when yet.
 
 


ErikAnthony
Regular Member


Date Joined Oct 2008
Total Posts : 21
   Posted 10/2/2008 12:19 PM (GMT -6)   
Thanks Princesa. I guess the biopsy may tell more..

ErikAnthony
Regular Member


Date Joined Oct 2008
Total Posts : 21
   Posted 10/2/2008 12:24 PM (GMT -6)   
Thank you UCat 16 Those are inspiring words. And I wish you the best as well. I'm sure it's not easy being that young. But like you said we must keep are heads up and fight through this. I will stay on this forum and talk and try to share and learn as much as I can. Sometimes I feel as though my Doctors have no compassion. I'm not saying they need to hold my hand. I just think they used to seeing us, and they forget the humane side of this.
I don't know maybe I expect too much.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/2/2008 12:33 PM (GMT -6)   
Asacol saved me. Give it a fair try. It's just an anti-inflammatory with a special coating that makes it not dissolve until it reaches your colon. All meds can have some side effects (although I haven't identified any for me with asacol) but can be well worth it! It's probably smart to try asacol before trying prednisone. I wouldn't worry about the severity labels on your diagnosis, which seem pretty subjective to me. But my understanding is if your whole colon is involved (like mine) it's sometimes called pancolitis.

My stomach doesn't usually hurt or bloat, it's lower than that. Is that what you feel? You sound stressed which probably adds to your physical distress, I hope you can find some peace.

Be careful with the spinach and seeds if you are really inflamed, they are high fiber foods that could irritate. I think it's good your doc knew to recommend the low fiber diet, I wonder about any doc or nutritionist that suggests high fiber with UC! I think the spinach is doing me some good now but I was in pretty good remission when I started it. I would never eat spinach if I was in a bad flare. I'm not planning to try the seeds. That's my two cents!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. Use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free diet, also none of the other foods tested sensitive to (cow's milk, soy, tomato, egg white, others)
Achieved remission for the first time in many, many years! 
Replete probiotic. Slow-release iron and B-12 shots for anemia.
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/2/2008 12:34 PM (GMT -6)   
Welcome to Healingwell.

Sorry to hear about your recent dx, but having UC isn't the worst thing in the world, it just requires a few adjustments to your life style. As Princessa said, don't stop the Asacol, it really does help, it just takes some time.

Before you start panicing, wait for the biopsies to come back and you've talked with your doctor again. In the beginning, it is really scary to find out you have a lifelong health condition, but once you find what works for you, things will smooth out.

It is important to remember that UC is a very personalized disease and what works for one doesn't always work for others. Please read through some of the threads here and on the Crohn's forum. You'll soon understand what I mean by personalized disease.

I wish I could paste a "What to do when you have Ulcerative Colitis" instruction manual for you, but there isn't any. Just try to educate yourself about what UC is, and gather as much info from this forum as you can. I always say this, but the most useful tool for me was to keep a food journal. List what foods you eat everyday, and how you felt afterwards (keeping in mind that sometimes you don't know how it affected you for 24 hours!).

Here is a thread that I found very helpful, and I've been living with UC for about 3 years now.
 

The thread is titled : I just got diagnosed with UC...help!

If you have any other questions, don't be afraid to ask, but be patient. Not everyone is online all the time.


Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (down to 10mg...yay!)

Post Edited (beartooth) : 10/3/2008 2:15:50 AM (GMT-6)


ErikAnthony
Regular Member


Date Joined Oct 2008
Total Posts : 21
   Posted 10/2/2008 12:49 PM (GMT -6)   
Thanks everyone for the many responses. It really feels good to know that good people care and want to help.
Like some of you had said it's new to me and I'm confused and not sure what to expect. I guess time will tell.
It's a long week i want to know what the biopsy will tell. I guess I hold off on the spinach. because I'm pretty sure I'm not in remission. I just hope some sort of remission will happen soon. Ohhh yes PEETY i'm really stressed!
I'm trying not to be but it's easier said than done. I have to admit I'm still kind of in that not wanting to accept phase where i'm stilling trying to tell myself it will just disappear one day. I guess that is not going to happen.

Then I wonder what to blame. Is it in my genes? i wonder was it that darn Clindamycin that the derm. prescribed
me for acne. (topical foam) I read that can be to blame...wish he told me to watch out for D or what it could do I would have never used it. Funny thing is I'm still using it because my pcp and GI both said it's VERY unlikely that was the cause.... does anyone have any info regarding that??

I need to get ready for work soon...it will be a fun day consisting of pain and many trips to the bathroom.
but i'll get by... Thanks again everyone i'll be checking often to chat :)

~erik~

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 10/2/2008 1:12 PM (GMT -6)   

Hi Erik,

Sorry to hear about your diagnosis.  I was just diagnosed last January, and it is definitely a huge blow after leading a very healthy life up until then.  I totally understand how you're feeling.  Over time you'll find acceptance of your condition.  There will definitely be struggles with medication and trying to decipher who and what to believe about how to get better. 

Since you were curious about it, I should tell you that I just started the spinach and sunflower seed thing yesterday.  I did have a big increase in diarrhea, but I started eating a homemade yogurt that has helped calm it down.  Since you're new to UC, you probably haven't heard of the Specific Carbohydrate Diet.  Its a very controversial and strict diet that has worked for some and not for others.  One of the elements of it is eating homemade yogurt that has a ton of good bacteria (more than any store-bought probiotic as far as I know).  I no longer do the diet, but I have continued to eat the yogurt and find it really relieves my symptoms. 

Here is a link with more info about it:

http://www.breakingtheviciouscycle.info/beginners_guide/yoghurt/yoghurt.htm

I hope you find that helpful.  Keep the questions coming - we're here for you!

 


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
 
 


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 10/2/2008 3:20 PM (GMT -6)   
Hi Erik, Sorry your having to go through this. I'm in kinda a hurry, so I'm just gonna throw out my thoughts.
~Look at the links on the top of UC forum, i think there's a heading called UC resources. There's a really good explanation of the differences btwn UC and Crohn's. It's the very last post from Judilyn. It's a website from John's Hopkins.

~I'm on your dose of Asacol and don't have any side effects. Not everyone gets side effects from meds.

~You must have "pancolitis", because it's throughout your colon. You'll probably always have this diagnosis, but you can go through stages of severity from mild to severe. The inflammation may be severe right now, but properly medicated, it can reduce.

~The GI would have done biopsies. They'll check for cancer. because you have UC, you're at an increased risk for cancer, but that's usually after 10 years. The meds help reduce your risk.
Tressa 35 (F) in WNY
UC w/skip lesions & stomach ulcers
Asacol 12/day, prilosec twice/day, Canasa as needed


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/2/2008 4:02 PM (GMT -6)   
I doubt a topical acne medicine can affect your colon. It's Accutane that apparently can cause/trigger UC, that's the acne medicine to avoid.
Although I wonder if acne might also be caused by excess yeast, which is what we apparently have in our colons when we have this disease. I still have breakouts, but since I was treated for MRSA earlier this year (with an antibiotic, before I knew that it would trigger a flare but I really had no choice), I noticed my skin has been a whole lot better.
So treat the yeast (probiotics) and you might not need the topical!

And, I agree, don't worry about cancer. Now that you know your disease, any cancer signs will be caught early. My GI says she has never had a UC patient develop colon cancer.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. Use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free diet, also none of the other foods tested sensitive to (cow's milk, soy, tomato, egg white, others)
Achieved remission for the first time in many, many years! 
Replete probiotic. Slow-release iron and B-12 shots for anemia.
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/2/2008 4:43 PM (GMT -6)   
Hi! Welcome to HealingWell :)

A UC diagnosis isn't the end of the world, but it sure does change your perspective of the world. Even though it's easier said than done, don't freak out yet. Write down all of the questions you have and take the list to your next doctor's appointment. Maybe even start a notebook to journal your experiences and keep everything in one spot. That way you can look back at your questions and answers for a refresher.

Keep reading through old posts and asking questions - that's the best way to learn. There is a bunch of information on this forum - it takes time to absorb it all.

Don't start or stop medications on your own. Discuss any concerns with your nurse or doctor.

Hope to see you around!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next infusion: 10/07/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 10/2/2008 5:04 PM (GMT -6)   
you could start taking lots of probiotics and stop sugar, yeast and carb intake. It helps.
26y old male medically disharged USAF veteran.Diagnosed with UC (lower proctitis) in 2004.
 
Current daily treatment:                               Probiotics & supplements:
1000mg sup asacol                                      50 Billion CFU's acidopholis&Bifidobacterium daily
2400mg oral asacol                                      Digestive enzymes before each meal
20mg prednisone tapering                             5grams of glutamine
75mg azathioprine                                       folic acid & calcuim with V-D
20mg Nexum                                               Whey protien  
 
Diet:Little/no sugars, fats, carbs, caffine,sugars,yeast. Stay natural as possible.  
 
Results:1 Bowel movement in the morning no blood! Remission

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, June 20, 2018 7:51 AM (GMT -6)
There are a total of 2,973,529 posts in 326,103 threads.
View Active Threads


Who's Online
This forum has 161099 registered members. Please welcome our newest member, Falksi.
380 Guest(s), 12 Registered Member(s) are currently online.  Details
ezhoe, 81GyGuy, Inspiredby3, tickbite666, compiler, Serenity Now, Kat1000, convertible68, Brook58, Szabo246, straydog, iPoop