disease management...frustration, sadness

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

piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 1/13/2009 9:49 PM (GMT -6)   
Does anybody see someone who specializes in helping people manage chronic diseases? Do they exist, or are they simply known as psychiatrists?
 
 
21, female
Diagnosed September 2007
Remicade
Prednisone
Rowasa
Asacol
Protonix
Bentyl
Lomotil
Lasix
Zofran


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/13/2009 10:01 PM (GMT -6)   
Therapists, psychiatrists, or counselors. Many specialize. Some can prescribe medicine for stress. Others can't. I'd look around.

I'm seeing a psychiatrist. One of his specialties is stress and anxiety.
Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06
Currently in remission

-------------------

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose

Post Edited (subdued) : 1/13/2009 8:07:40 PM (GMT-7)


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16743
   Posted 1/13/2009 10:31 PM (GMT -6)   
I am sorry you're feeling so down. I think many of us can relate. I wish I could see someone but I don't have insurance... Between bathroom trips, stress and vivid dreams, I haven't had a decent nights sleep in months. I would think there are psychologists/psychatrists that specialize in chronic illness but I have never checked because I never considered myself ill until recently. I hope you can find someone to talk to and get medication to help if necessary. If you ever want to chat, let me know and we can email.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 1/13/2009 10:56 PM (GMT -6)   
Psychiatrists just prescribe medicine although your regular doctor can prescribe as well. There are some psychologists and counselors who specialize chronic illness, but those who don't specialize might be able to help as well. Sometimes it just helps to have someone to talk to who won't judge you and has an outside perspective. And you can always vent here if you need to!
 
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 1/13/2009 11:23 PM (GMT -6)   
I don't feel I have any issues with managing this disease. Despite knocking me out and consuming much of my life, I think in the last 2 years I have maybe had 5 or 6 days that I just hated my life because of it. Other than that, it just annoys me and on occasion it gets me down but mostly because I don't feel well. It doesn't really interfere with my life it doesn't make me hate myself or want to end it. My dad and step mom insist that I need to see someone who can help me manage it and that just irritates me more than anything. I don't really feel that I need any type of psychological help with UC. I'm not going to open up to someone I don't know and tell them all about it, I can take care of it on my own. I find my own comforts, and someone can't really force anything on to me...I'm stubborn.
21, female
Diagnosed September 2007
Remicade
Prednisone
Rowasa
Asacol
Protonix
Bentyl
Lomotil
Lasix
Zofran


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 1/13/2009 11:36 PM (GMT -6)   
My dog and my wife have been my best therapists. I'm really not kidding... :) They don't judge me, they always listen, I get as graphic as I want and they still love me.

What I'm trying to say is sometimes companionship and letting someone in that has a good heart can make all the difference. UC is a stress monster that eats stress and grows stronger. Weaken it by venting here, on a trusted friend or family member, or even your pet. Your body will thank you in the long run.
Diagnosed w/ Ulcerative Colitis in 1995
32 years old
Living med free  
Currently in remission  


Yujin
Regular Member


Date Joined Feb 2008
Total Posts : 55
   Posted 1/14/2009 12:41 AM (GMT -6)   
My dogs are my stress releaser... everytime i go home so tired... it will dissapear after seeing them... they comfort me... and they add happiness to my life..
Diagnosed with UC on 2007. Undergone Fistulotomy on 2005. Taking Generic Asacol 400mg 3X a day... "HEALTH IS WEALTH"


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 1/14/2009 12:43 AM (GMT -6)   
My boyfriend (or whatever he is right now) is just about the only thing that helps me when I'm feeling down. Unfortunately, hes got me down a little bit more than UC does...atleast they can remove my colon and cure the UC, there probably isn't a cure for love. :(
21, female
Diagnosed September 2007
Remicade
Prednisone
Rowasa
Asacol
Protonix
Bentyl
Lomotil
Lasix
Zofran


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 1/14/2009 1:08 AM (GMT -6)   
I'm missing the point of your original question....could you clarify?

q
*Heather* Status..Asacol  (3 twice daily); flaring since Dec 22, now tapered to every 3rd nite as of Jan 13
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (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 !!!
 


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 1/14/2009 9:26 AM (GMT -6)   
Religion, exercise, and my hobbies are my stress relievers.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day
 
 
 
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/14/2009 9:40 AM (GMT -6)   
Have you tried looking for a support group? I am thinking about looking for one in my area?
Some great suggestions here. Don't wait on getting some help, though. I am not trying to push anymore meds, but seeing a therapist wouldn't be a bad idea.
Jackie, 43
Pancolitis, DX October 06

Lexapro, colazal 3x3, Synthroid, Protonix, 6MP (75 mg)
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 1/14/2009 9:47 AM (GMT -6)   
subdued said...
Therapists, psychiatrists, or counselors. Many specialize. Some can prescribe medicine for stress. Others can't. I'd look around.

I'm seeing a psychiatrist. One of his specialties is stress and anxiety.



Joy - how is this working out for you? I am a very stressed person by nature, and I think this is causing havoc with my UC....not to mention the mental issues of having a chronic disease for 14 years.... I have seriously thought about seeing a specialist about it....I never looked into it much.....I am curious to hear from someone who is doing it.

Thanks!!
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 40mg pred (as of 12/16/08), 12 pills Asacol per day, 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics, Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 1/14/2009 10:03 AM (GMT -6)   

Hang in there.

It sounds like you and your bf may be going through something, and/or something other than UC is bothering you. I find that sometimes, it's not that having an illness is the end all, but it's the fact that the everyday stresses in our lives that most people cope with, are ADDED to the fact that we are already dealing with this illness. We have a full plate and then some.

Hang in there. Don't feel like you are alone and don't let the UC have anything to do with anything else if at all possible. If things aren't working out with your bf, don't let the fact that you have UC get you down on top of this. It will not affect whether you and him make it, or whether you find someone else. If anything, it will help you make sure you find that right person.

Oh...and like a couple others here, my dog makes me laugh everyday.

Try finding a hobby or something you enjoy doing. Hope you find ways to feel happy. Just be comfortable with who you are. That's the biggest thing to happiness. You can't break up with yourself, it's a lifelong marriage.


 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - currently feeling ok
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg 45mg 40mg 35mg day - Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/14/2009 10:07 AM (GMT -6)   
I know you feel that you are managing this disease effectively, but could it be that others are seeing you suffer in a way that you are not aware? I know that when my anxiety is starting to get out of control my family notices before I do. I'm also stepping out on a limb here, but it could be that you rely too much on your boyfriend for support. I understand how important it is to have someone like him in your life, but please make sure the UC is not a primary issue in that relationship. The secret to coping and living with a chronic illness is to not allow it control...you have UC...UC does not have you. And it sounds like you do manage fairly well...but maybe it's a bigger part of your life than you think.

I personally am exhausted with this disease, and I do my best to not allow it control...however, never being in remission makes it very difficult to get on with my life. : ) I found this site extremely supportive and it's taken a lot of the strain off my husband and family b/c they have seen a change in my attitude. Also having decided to go through with surgery has given me hope for the first time in two years, so I'm just a little giddy. Today is not such a good day, and I had to ask another professional to take over a class I was supposed to teach this weekend...so that really is upsetting. I absolutely hate it when I'm unable to follow through with basic responsibilities...and that goes for my jobs...housework...Mommy things...it just really sucks.

Now, I am on Paxil to help with my sadness and overall anxiety...it helps to take the edge off and it allows me the opportunity to think through my feelings. I also am very strict on myself and my clients about pitty parties being 10 minutes...you get one per day...so time it. : )

Also...having a chronic illness affects not just you but your entire family. The life cycle you are in is permantely altered b/c of your needs and inabilities. Roles between yourself and your family members are different than those who do not have a chronic illness b/c our needs are different. Unfortunately we rely on assistance at times, and this is something a normal 20-some year old should not need. I'm 28 and I need my family to help maintain the cleanliness of my home...care for my son...and just their presence sometimes helps to lift my spirits. Now, if I did not have this disease I would not think of asking my Mom to help with dishes...I can do it...but not when I'm having a super bad couple days...I really appreciate her help.

Anyway, I am so sorry if I'm not any help. I just think that one's mental health is of the upmost importance, and when you have a situation such as UC, it's even more important to be aware of your feelings and your needs.

I do wish you the best and that you find supports for yourself and your family.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 4:31 PM (GMT -6)
There are a total of 3,006,589 posts in 329,352 threads.
View Active Threads


Who's Online
This forum has 161840 registered members. Please welcome our newest member, 6catlady.
286 Guest(s), 16 Registered Member(s) are currently online.  Details
goshawk, borrelioburgdorferii, Wings of Eagles, Froggy88, HeartsinPain, mattamx, running wild, Andrina, Scaredy Cat, Alxander, InTheShop, Hallieb, oregonhay, Aerose91, jwebb, Shayanv