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butafly30
Regular Member


Date Joined Oct 2008
Total Posts : 24
   Posted 10/5/2008 12:38 PM (GMT -6)   

Hello everyone

I'm new to these forums so I don't know where to start.. I'm 29 years old and in September of 2008 I was diagnosed Ulcerative Colitis, it's only been a month and I feel I have so much more to learn about this! I have so many questions that I don't even know where to begin. I have good days and then I have days I just want to crawl under a rock and just hide, I'm sure we all feel like that sometimes. Anxiety has taken a HUGE part in this, I can't seem to control it! Does anyone else deal with really bad Anxiety? I would love to chat and learn more about other people's stories

Thank you all listening :)


Have a great day :)

Post Edited (thankful30) : 10/5/2008 2:07:27 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 10/5/2008 12:42 PM (GMT -6)   
Hi...welcome to the forum!

We all have "anxiety" of varying degrees.

Where in the colon is your UC...limited or throughout?

What meds are you on at this time?

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


butafly30
Regular Member


Date Joined Oct 2008
Total Posts : 24
   Posted 10/5/2008 1:14 PM (GMT -6)   
Hey quincy thank you for welcoming me!

It's almost throughout the whole colon.. I'm on colazal and tapering down off prednisone, and hopefully I wont have to go back on it but we'll see.

What meds are you taking?
Have a great day!


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/5/2008 1:59 PM (GMT -6)   
Welcome to HealingWell, Thankful. You'll get a lot of information and support here. Also check out the UC resources thread at the top for some great posts and informative links.

Hint: if you look at people's signatures under their posts, a lot of us have our current meds and status listed there.
Judy
 
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.


butafly30
Regular Member


Date Joined Oct 2008
Total Posts : 24
   Posted 10/5/2008 2:02 PM (GMT -6)   
Thank you Judilyn,

Everyone seems so nice here.. I think this is going to be a great place for me to learn alot about UC!

I will have to set up my signature, I'm all new to this.. thank you for letting me know about that =)
Have a great day :)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 10/5/2008 2:03 PM (GMT -6)   
Welcome Thankful,
     I was diagnosed in 1998.  My info is listed below.  I don't have much anxiety lately, but I have had a good deal in the past.  My doctor prescribed xanax for it.  Perhaps your family doctor could help you in that department.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


butafly30
Regular Member


Date Joined Oct 2008
Total Posts : 24
   Posted 10/5/2008 3:44 PM (GMT -6)   
Thank you!

so you've had it for awhile now.. I'm still trying to learn as much as I can about this.. so I do apologize if I ask alot of questions. How are you doing with it to this day? I just pray that once I'm off the prednisone I wont have to be put back on it again.

My doctor recently put me on ativan which seems to help alot with my anxiety. I was going into panic mode and didn't know how to control it, but it has been helping me alot. It's crazy what anxiety can do.
Have a great day :)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 10/5/2008 4:04 PM (GMT -6)   
     No need to apologize.  We are all happy to help you if we can.  I think we all draw comfort from each other.  My hubby said to me today "Don't you get depressed talking to sick people?"  Sometimes he just doesn't understand, he means well though.  I felt so sorry for him while I was in the hospital, he looked soooo worried.  He gets so frustrated that the doctors are having a time of it trying to get me into remission this time.  By the way, my answer to him was..."No way does the healingwell formum depress me.  I feel like I learn something from everyone."
     I see you were diagnosed in September.  September was the month I became ill for the first time too.  Since then, my flares have always been either in the spring or fall.  I just know they are going to find a common seasonal allergen that sets us all off.
     I am doing pretty well now.  My prednisone is cut down to 25 mgm today.  Tomorrow I see my GI doctor.  Prednisone is the wonder drug for me...always has been.  Unfortunately, side effects are not good.  Before I started this last regimen of pred (a week ago Thursday at 40 mgm), I was having six to eight BM's a day and bled all over the bathroom floor before I made it.  Terrible urgency too.  I started the pred that day...by Saturday, no sign of blood, no urgency, no diarrhea.  Everything still under control.  I do feel tired but my heart doctor (no heart problem, just high blood pressure) put me on a water pill while I am taking the prednisone to keep my BP down.  Been on prednisone better part of six months this time...oh well.
     Glad ativan is doing the trick for you.  Yes, anxiety certainly is NOT pleasant.  You have a great day too!
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


butafly30
Regular Member


Date Joined Oct 2008
Total Posts : 24
   Posted 10/5/2008 5:34 PM (GMT -6)   
It's good to talk to people who suffer from the same thing.. my family and a few friends of mine said that I should find a site to go on and talk to people who have the same thing and get to know more about it, which was a great idea and I'm glad I came on here :)

My husband was the same way when I was in the hospital, he was so worried and didn't know what to do. But he did a great job just by being there, which is all that matters.. along with my family, they are all AWESOME!

I'm glad you are doing well now :) I'm a little nervous once I stop the prednisone, alot of people have told me that they tend to have to go back on it and then they are on it for a long period of time, so we will see how I am once I finish *fingers crossed*

Do you have an email?

Diagnosed Sept 2008

Colazal, Prednisone tapering off, 3 weeks to go

Anxiety medication

Iron


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 10/5/2008 6:05 PM (GMT -6)   
Welcome to the forum thankful30............Has your doctor talked about rectal meds at all? I will always choose rectal meds over the pred. There are a few different rectal meds. They do have one that has some steroids in it, but it is much safer than taking the oral pred.
*******Donna*******
 
South of Boston, Ma
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


butafly30
Regular Member


Date Joined Oct 2008
Total Posts : 24
   Posted 10/5/2008 6:36 PM (GMT -6)   
Hey Donna! How are you?!

No my doctor hasn't talked to me about rectal meds at all.. you prefer them over reg meds, they seem to work better?

wow that's great 16 years without any meds!
:)

Diagnosed with UC in September of 2008

Currently on Colazal, Prednisone (tapering off), Anxiety and Iron pills


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 10/5/2008 8:20 PM (GMT -6)   
I'm on Sulfasalazine along with the rectal meds. I only do the rectal meds once, maybe twice a week. I think they get to the "heart" of the problem quick than oral meds. They have certainly been a big help to me. I'm not on the hydrocortisone enema (which is on of the steroid ones) I'm doing the rowasa ones. But I definitely prefer the hydrocortisone enemas over the oral pred any day. Good Luck, hope you see some improvement.
*******Donna*******
 
South of Boston, Ma
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


butafly30
Regular Member


Date Joined Oct 2008
Total Posts : 24
   Posted 10/7/2008 6:05 PM (GMT -6)   
I'm glad they help you!

Thank you.. I'm still trying to get use to all this, but I'll get there =)

Diagnosed with UC in September of 2008

Currently on Colazal, Prednisone (tapering off), Anxiety and Iron


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/8/2008 4:05 AM (GMT -6)   
Hey Thankful,

Welcome to the HealingWell. Your family was right in saying it is important to find others who can relate with your experiences, and this is a great place to find those people.

It took me quite a while to accept that I had UC, because prior to my dx, I'd never had any really bad symptoms or flares. I've had anxiety issues in the past, took clonazepam for a number of years, but I finally got my anxiety down to a level where I can cope without needing a pill for it. It is definitely something to consider to help get yourself through the first few months. It is really kind of scary to find out you've got a lifelong illness, but hopefully you can get get a grip on it quicker than I did. It took my first full on flare to really accept I was ill, but I'm glad it happened, because I'm taking much better care of myself now than I was.

It really helps to educate yourself about this disease, so read through as many threads as your mind can handle. We all have such different experiences with UC. BTW, in your signature you don't mention taking any probiotics. Don't know about them yet, or just don't want to take them? I'd also like to advise you stop taking the anxiety, maybe switch to a happier feeling, like hope? lol
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 (trying to taper down)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/8/2008 12:34 PM (GMT -6)   
I have found it very reassuring to participate on this message board. The first few weeks I found it surreal, because I have never known anyone else, in more than 20 years, who had this disease yet here are all these people who experience the same things I do! Sometimes it makes me tear up, and I let my husband read some posts. He thinks it's great.

To reduce your anxiety, please do whatever you need to do to give yourself peace. Don't let anyone pressure you to do something that will make you nervous or uncomfortable. And you can do that without telling anyone that you have the disease, because I don't.

Hopefully you will be one who gets to remission and stays there. Either way, you will learn to cope. This group will help you learn faster!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 2400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy, dairy-free diet. Replete probiotic. 
Achieved remission for the first time in many, many years!? 
Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & now recovering from irritation scope caused. Will be using Rowasa again. But I AM better.
 
 


trumpington
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 10/8/2008 2:13 PM (GMT -6)   
Hi,

Regarding the anxiety, you might also be experiencing some effects from reducing the dose of prednisone. My first time tapering off prednisone I had very distressing episodes which would start with a very eerie feeling of deja vu. If I then put some effort into recalling what the situation was reminding me of, my brain would progress to a state wherein I felt as though I couldn't recall anything about myself: name, age, location. Quite frightening until I understood that it was just the prednisone.

Regards,
Craig

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/8/2008 2:19 PM (GMT -6)   
Wow that's freaky. I noticed that I suddenly couldn't remember what time of year it was for a few moments, and had to really think about it. I thought I was just on overload generally.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 2400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy, dairy-free diet. Replete probiotic. 
Achieved remission for the first time in many, many years!? 
Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & now recovering from irritation scope caused. Will be using Rowasa again. But I AM better.
 
 


butafly30
Regular Member


Date Joined Oct 2008
Total Posts : 24
   Posted 10/8/2008 6:24 PM (GMT -6)   
Hi beartooth!


Your right this is a great place.. everyone is so nice and helpful!

thank you for the advice =)

Diagnosed with UC in September of 2008

Currently on Colazal, Prednisone (tapering off), Anxiety and Iron


butafly30
Regular Member


Date Joined Oct 2008
Total Posts : 24
   Posted 10/8/2008 6:29 PM (GMT -6)   
Hello Peety!


I felt the same way when I first found this site.. here are all these people who experience and have the same thing that I do.. and to think I thought I was all alone out here. I'm so glad I found this site, it's been a great help to me and everyone is wonderful =)

Thank you so much!!

Diagnosed with UC in September of 2008

Currently on Colazal, Prednisone (tapering off), Anxiety and Iron

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