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Posted 9/16/2008 12:54 PM (GMT 0)
Hi - I am 37 years old and just diagnosed with UC. I am currently on Asacol (12 pills per day) and 30mgs of Prednsione. My dr. did some blood tests and told me that I am the 1 in 100 people who cannot take 6MP due to a lacking enzyme. I was wondering if anyone else is that "1 in 100" and how they have done on other meds.

On a side note... I am an emotional mess!  I keep reading others stories and am overwhelmed with what lies ahead for me. I am naturally an anxious person and now this has totally put me over the edge with anxiety!  I am afraid to eat - fear of getting worse.  All I want to do is curl up in a little ball and forget that this is now my life. But I cant - I have a husband and 2 young children that need me.

Any suggestions to help overcome this would be greatly appreciated.

 

Posted 9/16/2008 1:07 PM (GMT 0)

Hi Michelle,

 

Try not to worry! I was diagnosed with UC nearly 15 years ago and have learned how to cope with the illness. Most of that 15 years I have been in remission and able to lead normal life, I have partied like there is no tomorrow, travelled extensively all over the world and work full time in a very stressful organization.

 

It is hard to deal with the diagnosis, but try not to get too scared over it, you will be able to cope and learn how to live your life to full, even with UC. Once your medication is tailored to your needs, you will feel different.

 

If you have any questions, feel free to ask them here, the support provided here is a blessing!

Posted 9/16/2008 1:13 PM (GMT 0)

Thank you... .I just cant stop crying all the time.  I am so scared.  I have never handled stressful situations well and am a very emotional person (all the time!).  

I am disappointed that I cant take the 6MP should I need to ...down the road.  I am worried that will have an impact on the progress of this disease.

I still have such a hard time saying disease.... I keep thinking....Oh maybe its just a bad bug and someone made a big mistake.  Yes... I am in denial! :)

I have read many posts on this board and it seems like such a loving,caring community of people

It sucks to be sick but I am so glad that I have found this site!

Posted 9/16/2008 1:41 PM (GMT 0)
Hi Michelle, and welcome to HealingWell. Being dx'd with this disease is a hard pill to swallow, so don't feel badly for taking time to grieve. Most of us have been through the same process, and this is a great place to find the support you need. As for meds, there are several different meds you can try and many of us have had to try different things to get us into remission. The same with food...some try different diets with success, other don't have much success with them. Some foods bother one person, another can eat the same food with no problem. Because we are all so different, each person needs to take their own lead in the road to remission. This is a great forum for info, support, and some great discussion. Make sure that you are comfortable with your GI; remember that you are in charge of your body!
Posted 9/16/2008 1:58 PM (GMT 0)
Michelle, I want to add my welcome; we're glad you found us.

It is hard to think of having a disease. I look at it as I have a chronic condition that I live very well with. The good news is that for the majority of people, UC doesn't get worse as the years go by; it's pretty stable. And most UC-ers are maintained well on only a 5-ASA such as Asacol with occasional short courses of Prednisone to bring the flares under control. So it's entirely possible you'll never need to try any of the other drugs that are available. If you do, take heart from the fact that there is a lot of research on new treatments for our condition, and new things are being approved regularly.
Posted 9/16/2008 2:11 PM (GMT 0)
Hi and welcome to Healingwell :) Yes, we understand your fear and anxiety. We have all been there and some are still there. When you are first diagnosed, it is hard to accept that you will have a lifelong condition (unless you opt for surgery) that requires medication on a daily basis. Keep in mind though that most of who you see here on HW are having a hard time with their condition. What you don't see are the ones out there that are doing well and living their life as if they have nothing wrong with them. So don't let the stories you read here scare you. You may be one of the lucky ones that get into remission (lack of symptoms) and hardly have any troubles again. I was in denial too in the beginning and lived like I was too. So please, do not stop taking your meds even if you are feeling well ok? There may be a time that you can reduce the amount of Asacol you are taking though but don't ever stop them unless you have the approval from your GI or you start having adverse affects from it.

Diet is very individualistic but I would have to say that the most typical diet is to avoid raw fruits and vegetables, spicy and greasy foods. Try to stick to a bland diet such as chicken, fish, rice, potatoes (this bothers some though) at least until you start to feel better. This will give the colon a chance to rest and heal faster. Also know that when you start to taper the prednisone, you may experience a slight increase of symptoms until your body gets accustomed to the lowering doses.

Do you know the extent of your Uc? Meaning, how high into the colon it goes?
Posted 9/16/2008 2:11 PM (GMT 0)
Thanks to everyone! I know how important it is to keep my spirtis up - I do believe in the power of the mind and its effects on the body.

A question.... I see that alot of people take probiotics...can someone give me some insight on the effectiveness and suggestions for types/brands? I am interested in learning about supplements to add to my medication.

Thanks
Posted 9/16/2008 2:21 PM (GMT 0)
Sherry
I have not had a colonoscopy yet so I do not the extent of the disease at this point.
My doctor wants to wait until things "calm down" since I am still so "active" right now.
He said regardless of whether he does the colonoscopy now or later....his treatment plan would be the same.
I am up to 12 Asacol a day with no side effects
I am taping prednisone by 5 mg per week.... I am on 30 mg right now
I am feeling good - no more pain and minimal diarrhea ( I was going 10-12 times per day initially!)
I have a silly/embarrassing question.......
I have hemorroids - which I have never had before
I have been doing sitz baths, witch hazel and preparation H
Nothing seems to work! They are getting bigger by the minute
Anyone have any good suggestions for this "pain in the butt"?????? :)
Posted 9/16/2008 2:24 PM (GMT 0)
Michelle, I know it is tough when first diagnosed with UC. Believe it or not, it will get easier. It does take time to find the meds that are going to work for you. Keep in mind that the prednisone can wreak havoc on you also as far as feeling out of sorts, depressed and what not, makes you feel jittery, on edge alot, interferes with your sleep. It should help you quickly as far as the UC goes, but it will definitely play with your head, so keep that in mind. It's a tough drug to be on for awhile. Has your doctor prescribed any rectal meds for you? These can also help quite a bit, sounds gross, I know, but we do what we have to do and if they make us feel better, we get over the "gross" factor. Good Luck, try to keep your spirits up. I hope you find some relief soon.
Posted 9/16/2008 2:36 PM (GMT 0)
If you have external hemmies you can try an OTC hydrocortisone cream but if they're internal you may have to ask your doc for steroid suppositories to shrink them.
Posted 9/16/2008 2:39 PM (GMT 0)
Donna
Just curious....where are you in Mass?????
Posted 9/16/2008 2:52 PM (GMT 0)
Brockton, are you in Mass also? I used Tucks medicated pads for my hemmies, they did help, but you need to wear a panty liner along with them or your pants will get a little damp.
Posted 9/16/2008 2:57 PM (GMT 0)
yes....I am in Holden... near Worcester
Posted 9/16/2008 3:01 PM (GMT 0)
Also for that sore bottom remember to get some wet wipes; I think Prep H makes some, but I use Cottenelle with aloe.

Posted 9/16/2008 4:00 PM (GMT 0)

thanks again to all!

I never imagined I would be talking to so many people about the shape, size and frequency of my poops!  And...having a Dr. look at and poke my hemorroids! (he-he)

Believe me....I am NOT a modest person...I am very laid back and open about everything in my life

I find it all so silly sometimes! :-) !

Posted 9/16/2008 4:20 PM (GMT 0)
Keep smiling Michelle........
Posted 9/16/2008 5:48 PM (GMT 0)
I'll throw in the .... why are you not on rectal meds???

It's unfortunate the doc put you on prednisone firstly.

Were you diagnosed via a sigmoidoscopy?

q
Posted 9/16/2008 6:28 PM (GMT 0)
michelle8871,

Worcester is only 15 mins away from me lol but another thing is i was advised to keep a diary of "specific" thingys like what you ate that day or how many times you went to the bathroom, just in case you have a little trouble staying in remission, knowing exactly what foods that trigger a flare is very useful
Posted 9/16/2008 6:45 PM (GMT 0)
Just a quick question Michele.  How did your doctor diagnose you without doing a sigmoidoscopy or colonoscopy?  I can understand his wanting things to "calm down" before doing a colonoscopy because I was in a flare a few years back (and my GI knew it), took the prep all for naught , and he could only go up 20 cm.  Couldn't go up further for fear of perforating the ulcers.  So your doctor is cautious...good thing.

 

Try not to stress too much, it aggravates your condition.  I have had UC for ten years.  Also, I have been on 6 MP for the past four years or so and it has NOT kept me in remission, so don't fret about that.  I've been in this flare since April, hospitalized for ten days in May...slooooowly coming out of it.  I take 9 Colazal a day, down to 5 mgm of prednisone from 30 (and by the way, prednisone can make you feel anxious), Cort enemas alternate nights with Canasa, 50 mgm of 6MP daily. 

 

My UC is primarily in my rectum. I am pretty clear further up, thank GOD.  Today was the first day I only saw a twinge of blood.  I have been bleeding since this flare started.  Been to a colorectal surgeon last month and he said I am not "yet" a candidate for surgery and that UC sometimes can "burn" itself out.  That was good to hear....LOL.

 

Take care and God bless.  OH...I am an "old" lady of 62.  So I feel for you "young-uns" out there. This is not easy to cope with.

Posted 9/16/2008 6:46 PM (GMT 0)
Hi Michelle, welcome, I just want to say that I was Dx in 2003 and have never taken anything but asacal and canasa suppositories due to the fact I cant take pred. are any sulfar drugs. And the asacal has kept mine under control for the most part. I only take 6 a day at this point. and if it starts acting up I use the canasa suppositories. works pretty good.So try not to worry about not being able to use the other drugs. good luck to you.
Posted 9/16/2008 7:42 PM (GMT 0)
Another long-timer here, you learn how to manage things. Everyone has their cross to bear, I suppose.

The suppositories for roids work well, and quick. See if your doctor will call in an Rx.
I have not taken 6mp, so don't worry if you cannot, I would say. Your meds are like mine.
Be happy your GI is not eager to do the colonoscopy already, they irritate an inflamed colon.
My GI has never pushed the probiotics, but I think they helped me but I also stopped gluten at the same time so I'm not certain. Can't hurt, a lot of healthy people take them just because we seem to have killed off our good bacteria with today's antibiotics, antibacterials, etc. I get Replete from the naturopathic doc. It's expensive ($5/day), maybe more than you have to spend but at least I'm sure it's quality stuff.

Be well, don't panic, give yourself peace to do what you have to do to feel comfortable.
Posted 9/16/2008 8:45 PM (GMT 0)
Hey Q, I was going to say something about rectal meds, but I knew you'd pop in and say something about them! ;-) Hee hee. Really, the rectal meds help quite a bit.
Posted 9/16/2008 10:39 PM (GMT 0)
Thanks again to everyone! I saw my Gastro this afternoon. He is treating me as colitis based upon my symptoms, excessive bloody diarrhea, weight loss, blood work, etc. No sigmoid or colonoscopy has been done...yet. He said he would be using the same treatment plan regardless of the colonoscopy results at this point in time. He did prescribe a suppository for the hemorroids and Cipro for my new bout of bronchits! Figures.....I get bronchitis with all of this going on! :)

I like my Dr. alot - he is very well respected in the medical community here. I guess I have to have faith that he is doing everything right. Most importantly - he is very calming for me. He demeanor is very compassionate and understanding. I sat and talked to him for 1 1/2 hrs today.....he never made me feel rushed or that he had other patients to see.

Kymie.....where do you see your Dr. at????
Posted 9/16/2008 11:22 PM (GMT 0)
Michelle, you asked about probiotics. Yes, a lot of us do take them. With UC, the number and variety of "good" bacteria in the colon tends to decrease, leaving a perfect environment for bacteria that can make us sick. Probiotics replace the good bacteria. It's similar to the Activia yogurt they advertise all the time, except that doesn't have enough probiotic in it to do us much good. Probiotics are especially important when we have to take antibiotics for some reason. The diarrhea that antibiotics give some people is caused by the meds killing off the colon bacteria; this is worse in us because we already tend to have that problem. Probiotics really help.

What probiotics have done for me is to make my stools more solid and decrease my gas (although be aware that they may at first give you more gas, but that should go away after a few weeks.) This after my medications got me into remission. I take Primadophilus Reuteri, which has a blend of three different types of beneficial bacteria. It has to be kept refrigerated, and isn't available everywhere. I order it off the internet. Other probiotics that I've seen people mention frequently are Culturelle and VSL#3. Both also seem to be effective.
Posted 9/16/2008 11:33 PM (GMT 0)
When I was diagnosised 8/25/08 I was in total shock and thought how do I live my life now? I too was afraid to eat and still am to an extent. I am fortunate in that I am starting to get better w/ the meds and my diet. But you just have to take one day at a time. You have to also be strong because you have children and they need you. It seems it's the end of the world at first, at least it did for me, but you move forward. This is not life threatening, it's a disease we have to learn to live with. This forum has been a Godsend for me. Learning from others, getting support, and yes, at times laughing. Stay close to us - we're here for you - we understand first hand what your going through. I'll pray for God to give you strength and to help you thru your flare and that He'll put you in remission soon for at least 20 years.

Wishing you the best!

Gigi1227
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