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SirJames
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/22/2008 11:27 AM (GMT -6)   
Well, based on a suggestion from the moderator, I thought I would introduce myself to this site since I'm a "newbee". :-)
 
I have been diagnosed with UC for about 15 years now.  Been trying to deal with it ever since.  I am currently on Colazol and Azathioprine.
 
My doctor has been stating that I am currently in "remission".  I guess his opinion in what "remission" is and what I believe it is it totaly different!  yeah
 
I am currently not experiencing any type of bleeding, but I seem to have all the other symptoms, but not as severe as when I am in a full blown flare-up.  Still the same, I'm still finding the emotional part very hard to deal with.
 
Emotionally, I feel as though I am a wreck...even though I do not protray it to others.  I am the type of person who does not want my problems to be others.  I have had this *&%$#@! condition for so long, it has worn me out emotionally.  Day after day, week after week, month after month and year after year...the same thing.  I average a flare up once per year and lasts for several weeks until the different medication that my doc prescribes (pregnizone) kicks in.
 
I still have sudden urgencies to head to the bathroom and you just do not know when it is going to happen.  This happens about an average of three times a day.  This is what is driving me crazy.  My wife and I are active people and it is very difficult for me to go and do certian things because of my condition.  I now actually have full scale anxiey  and panic attacks if I feel trapped for some reason (traveling in a car, on a plane, in line somewhere, etc. etc.).  Yes...I try to take as much precautions as possible (Amodeum, toilet paper on my possession and even wear Depends from time to time!).  But, having this condition to naw at you for so long, it has broken me down.
 
I honestly can say that I try everything in my power not to have this "thing" affect my wife by tyring my best not to show my emotions when I am under one of these attacks (my UC or anxiety attacks).  I cannot have my condition affect others and their lives!  I feel bad enough having this condition, but to have my condition affect others and especially the ones I love would tare me apart.
 
I know that the doctor can try to treat the condition, but how does one treat the emotional aspects of it as well?  How can you not feel panicked when you are in a place that you may not be able to get out of in time?  To hear someone say..."just don't think about it" dives me crazy!  It's not like you can turn this emotional trauma like a switch!  It's gone beyond that.
 
For me...life is not as enjoyable as it used to be.  Not enjoyable at all and I'm not even in a flare up.  sad    I applaud the people who can triumph emotionally over this condition!  It's just for me....it has been so long and the doc says that "this is the best you are ever going to get".  That's real comforting.  I have looked locally for groups for UC and even at our local hospitals that help people emotionally with medical conditions..but nothing.
 
I better stop right here.  This thing is getting to be a novel!  LOL!!!!  Sorry people for the ones who acutally read through all of this rambling.
 
 

TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/22/2008 11:32 AM (GMT -6)   
I take zoloft for the anxiety...it really helps...
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m, multi vitamin, Azathioprine 100m (started 1/9/08)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/22/2008 1:32 PM (GMT -6)   
Thank you SirJames for introducing yourself :) I too believe that the emotional impact this has on us is the hardest to overcome - or even at all! Do you take anything for your anxiety? Where do you live? If it's in the states, the CCFA sponsors many events that maybe you can attend one to try to meet up with someone that has Uc? Has surgery ever crossed your mind?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/22/2008 1:50 PM (GMT -6)   
Hi SirJames and welcome,

sorry you are having a such a hard time and I always kept everyone out of what was going on and did not want to bother anyone, but I went through a major flare a few months ago and my husband, family, friends and a couple of co-workers (also good friends) were/are so supportive, it really helped me.

I've thought about going to therapy to deal with this as well as everyone is supportive but they don't really get it and I know I need to sort out my feelings about this. Also, being on a high dose of pred, doesn't seem to be helping me out emotionally (go figure = )

Hope you are able to get your flare under control very soon!

Take Care.
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/22/2008 2:05 PM (GMT -6)   
Welcome! Glad to have you.

Yes, the emotional aspects of UC can be as debilitating as the symptoms themselves.

You might want to share more with your wife. I know, as a wife, that I would try to be as accomodating as possible. I'd also feel very left out and wonder if there was something I could do - or even if there was sometime I did to cause you pain. I hate to see my husband suffering, especially if there was something I could to to help.

Also, as Red asked, where are you located?  There might be other HW UCers near you :)


Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


SirJames
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/22/2008 2:14 PM (GMT -6)   
Red_34....no, I currently do not take anything for the anxiety. Maybe I need to look into that. I currently live in Michigan, but quite a distance away from any CCFA events. yeah, surgery has crossed my mind, but that's about it. I have been told over and over that my current condition does not warrant surgery. To be honest, I can't help but wonder if what surgery would do to me. Emotionally, would I be in the same boat? I don't know....

Beth75....maybe I need to suck it up and let some of my emotions out to my family and close friends. It is so hard to say..."Nope, sorry hun..I can't do this. Oops, nope..sorry hun, I can't do that"....all the time. How many times does it take doing this before it starts to ware on the people around you? We are all human. Can you imagine what a person may feel after 15 years of this constantly happening and being held back on the enjoyment of life? It's tuff and these are some of things that I always think about. I mentioned that I am currently not in a flare-up, but I still have many of the side effects (but not as severe). It still grades on me all the time. There is not one single moment that I do not think of what could happen when I leave the house. Not one.... You know what is really frustrating?....that there may not be an end in sight for this. :o(

gmasusie
Regular Member


Date Joined Nov 2007
Total Posts : 30
   Posted 1/22/2008 2:57 PM (GMT -6)   
Where abouts in Michigan do you live? I live in the Kalamazoo, Battle Creek area. I was Dx in July 07 but can remember for many years having stomach problems. I also take Paxal for depression-have taken it for many reasons over the years. I think something would really help you with your frustration. I know for me just one day at a time sometimes is all you can do.
Sue

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/22/2008 5:08 PM (GMT -6)   
Ha! I knew it! :) Must be something in the waters here in Michigan.......we have a lot of Michiganians here, myself included. I live near the Detroit area. I have already met up with Laurar, shoegrl and Dakotagirl (before she moved to Texas) - these 3 ladies are from HW. I had never met anyone who had this disease so it was great to meet them and talk the talk if you know what i mean.

Yes, I think you should look into an anxiety medication. It might help you deal a bit better with the emotional aspect of this disease. Also, it wouldn't hurt to talk to a therapist if you can.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/22/2008 6:19 PM (GMT -6)   
SirJames, sometimes that terrible urgency is a symptom of proctitis. The rectum is the last part of your colon to clear up, and the first to flare.

Are you on any maintenance medications between flares?

Have you tried any rectal meds? A lot of people are helped by Rowasa or hydrocortisone enemas to clear up the proctitis and ease the urgency. You may want to discuss this with your GI.

Welcome to HealingWell. For support and suggestions, you've come to the right place!
Judy
 UC Forum Moderator
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30411
   Posted 1/22/2008 11:32 PM (GMT -6)   
Hi Sir James...welcome to the forum.

I second the rectal meds.

Regarding changes in lifestyle will be necessary when dealing with UC...especially initially, but eventually you will find more middle ground and acceptance.

Try not to think/dwell for too long on what you can't do......try to change your perception on what your other options are. As well...not all changes for always...

It takes time to get it figured out. I definitely agree with talking with your wife and tell her how you're feeling. She'll hopefully share with you how she's feeling as well. two heads are better than one when making/searching for changes.

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


sdaless
Veteran Member


Date Joined Jun 2005
Total Posts : 1396
   Posted 1/23/2008 11:39 AM (GMT -6)   

Welcome Sir James,

I can feel your anxiety and frustration as I am sure most of us have.  There are a great deal of people with UC and Crohn's who take an anti anxiety medication.  I for one do and know I wouldn't be able to cope without it.  I also take ativan when needed which at times is more often then others.  I was diagnosed @ 2 years ago and I can't imagine how it would be 15 years down the line with my family.  I now sometimes feel they are sick of hearing it.  It is tough on us and them.  There really are some limitations we have to do.  Don't push yourself.  If you can't do it then don't do it.  I hope I have helped in some way.

Stacy


Current meds are:
 
Asacol 6 pills a day
Lexapro 20 mg once a day
Ativan .5 mg when needed
Canasa when needed
 
 
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/23/2008 12:31 PM (GMT -6)   
Hi SirJames,

In another thread you mentioned diet and I am not sure if this will be helpful at all to you but for me coffee (even decaf, I think it's the acidity too) and soft drinks w/caffeine really increase my bm's and I think aggravates my colon so that I have to go many times more a day than normal. I don't know if you are a coffee drinker but if you are I would try not drinking caffeine for a month to see what happens. Just an idea.....for me when I think I am ok and drink coffee one day (b/c I love it!) and then start having a few a week thinking I am okay, after a week or two of that I really have more bm's a day.

Also, I believe probiotics have helped me out as well. I have not tried the SCD diet but there are threads on that here and some people swear by it.

HTH!
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


SirJames
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/23/2008 12:44 PM (GMT -6)   
Thanks for the support fellow UC-ers'!  :-)
 
For those of you taking meds for anxiety, when do you take it?  Is it a normal regimate a day?  Do you take it when you feel an anxiety attack coming on?
 
I usually am ok through-out the day when I am either at home or at work.  It's just everything else in between that drives me nuts!  yeah    For me, an anxiety attack starts to rear its ugly head when I know that I will be travleing soon.  How bad it may becomes depends on where I am going and what we are about to do.  In other words, if it is something that may keep me away from a bathroom longer than others, the anxiety and panic attack gets worse.  Would love to pop a pill right before doing something so as not to have my possible panic attack upset my stomach.
 
I am my own worst enemy.  It's a catch-22.  I get nervous when I am about to do something because I'm afraid that something could happen and it then upsets my stomach further!  What a vicious circle.
 
Can your GI prescribe these types of meds or must I visit my gerneral practioner?

-Jim-
(Remission - but having symptoms)
 M/39
Colazol - 50mg X9
Azathioprine - 50mg X2
Predisone
Azacol


quincy
Elite Member


Date Joined May 2003
Total Posts : 30411
   Posted 1/23/2008 2:23 PM (GMT -6)   
All you describe seems normal....I'm not a traveller, and if I had to go somewhere I'd probably spontaneously start flaring!

I think if you are able to see improvement and have a good med regimen set up, you'll be fine.

Are you a traveller normally? and have just recently had the anxiety regarding meds/symptoms?

You really must get the rectal retention meds...I would suggest a 5ASA retention enema...really....start them asap.

Hang tough...it's in the new stages of change..but there are many who travel with their UC and have actually had minimal symptoms during their excursions.

The anxiety now will exacerbate your symptoms. Seek a plan with options.

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!

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