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does anyone else get tired or talking or thinking about all of this mess?

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Ulcerative Colitis
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Posted 6/3/2010 3:42 AM (GMT 0)
So after my appointment at U of M, my list of diagnoses has just gotten bigger. They seemed pretty positive about everything so I feel like maybe I'll see a change but I still think that right now I'm getting another flare-up. And I'm tired of talking about it with people. Yeah, when I have a question or a thought I like to mention it to someone but I am SO tired of talking about it with people all the time. My mom comes and sits in my room when I'm watching tv and starts going on and on about it. People call the house wanting to talk to my mom or dad and ask me how I am and want like a complete update. I go to the library and people see me and want to know everything. I have to keep my teachers and principle updated. I try to keep a few good friends updated. And my new doctor suggest I talk to someone about everything but I think it might be better for me to stop talking about it. The more I talk about it the more I think about it and sometimes I just think of all the bad things that could possible happen or all the bad stuff I've already been through. Does anyone else feel tired of talking about it? How do you guys deal with everyone wanting to know everything? For the love of cats, everything I do is already affected by it. Do I really need to talk about it too? Am I being mean? Insensitive? Overreacting? Half the time I can barely get out of the bed in the morning ok. I don't do barely anything for fun anymore. Half of my future dreams have gone out the window. Isn't it normal to not want to talk and think about it 24/7??!?!

 

And just for anyone that was wondering I made a list of everything that I supposedly have for now.

-Crohns disease (used to think it was ulcerative colitis)

-A.D.D.

-asthma

-anxiety (anxiety attacks)

-depression

-Post Traumatic Stress Disorder

-migraines/tension headaches a lot

-arthritis (ankylosing spondylitis)

-strep throat

-possible sleep apnea

-severe insomnia

-"constipation" which I am not. this is how it started last time. how can you go 4 times a day and be constipated. whatever..

-not so great vision or hearing

yeah :-)
Posted 6/3/2010 3:55 AM (GMT 0)
I am sort of the opposite. I don't tell anyone anything and I keep it all bottled up. My parents don't even know I have an illness. I think it's bad to talk too much or too little. It would be nice to have some support from people but at the same time, I don't want to hear people tell me what I should do or try when they don't know anything about anything. It's very difficult dealing with these issues. The only person I really burden with my drama is my boyfriend and I can tell you he does not want to hear about it at all. He is actually very insensitive most of the time and treats me like I am a whiney baby and a complainer. It usually makes me feel worse so I walk around pretending everything is fine. Fortunately the majority of people in my life (are they really in my life??) are 2k+ miles away so it's easy to keep things hidden. Amazingly, I've had a tough time the past few months with all of the visitors. Funny you can't even pull off "normal" for a few days without getting called on it. I think Im going to see a Psychiatrist. I am too stressed and bottled up. I do feel your pain but you know, it's hard for all of us. If you were bottled up, you might feel worse, maybe better, who knows.
Posted 6/3/2010 4:33 AM (GMT 0)
Yep, we did a long thread on this topic about 3 months after I joined the Forum. Lots of UCers have problems with relatives, friends, and/or mere acquaintances who ask personal questions about "this mess" and/or give advice that can be unwanted or inappropriate. I remember that one of the moderators wondered in our thread if they also do that to people who say they have cancer. It can definitely try your patience, especially in your first yrs after diagnosis. Hang in there! You'll learn how to handle it. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/3/2010 5:03 AM (GMT 0)
I completely understand.   I was in the hospital for a week before being diagnosed.   I got so sick of being asked, “So, how are you feeling?” for months after my hospitalization.   I knew their intentions were good, but I got so sick of talking about it.   It has almost been a year since diagnosis and I now feel a very strong need to talk about it – on my terms, though.   I recently started a blog, so I could do just that.   I also have Type 1 Diabetes and I do get very tired of everyone saying, “Can you eat that.”   I wish people would realize that I know how to take care of myself better than they do!   It sounds like you have a lot going on.   I am so sorry that you have been so sick.  
Posted 6/3/2010 2:21 PM (GMT 0)
I feel the same way. I am so tired of my mother especially calling and all day long asking how did I feel today. I tell her everyday it is the same as yesterday and if I wake up with a miracle I will let her know. I swear I don't think I would even need Zoloft if it wasn't for her. Drives me crazy. My husband isn't as bad. I tell her I eat and I use the bathroom a million times a day. It never changes.
Posted 6/3/2010 3:04 PM (GMT 0)
Nobody really ask me about it hardly at all, but me and my one sis talk some because we both have UC. Of course I am 40 years old and you are young so that can make a difference too.

Lots of those things on that list them doctors say you have is bullcrap. ADD isn't a disease as it is just how some people are IMO, they want to make everything a disease that way they can sell drugs for it. Same with depression/anxiety, feeling down or worried because you have an illness that never goes away is just a normal human reaction, doesn't mean you are depressed and have mental problems.
Now days they label normal human reaction as something abnormal and want to feed you drugs for it.
Posted 6/3/2010 3:27 PM (GMT 0)
I don't mind talking about it and have been very open about things, but I do hate how it has taken over my entire life. It seems like all I have anymore is that I'm a sick person and everyone knows it. That's what gets talked about when I see friends. ANd I also hate that people say "oh it's good you're feeling so much better" when they see me out. The truth is, I'm not but I go out in order to make my son's life as normal as I can but I struggle with everything, even the simple things like getting him in and out of his carseat
Posted 6/3/2010 6:40 PM (GMT 0)

so don't.  talk about it or think about it all the time.  You may not have any control over the UC, but you have control over what you talk about and think about.  Have a stock answer ready for people who ask: " Thanks for asking, I really do appreciate it. I am not feeling better but I am choosing not to focus on it.  If I want to talk about it, I will come to you, so thanks for being there if i need you in the future"  as far as thinking about it all the time, well do something to distract yourself.  Distracting yourself is a highly underrated way of coping.  Go do something you enjoy that takes your mind off off it, read, quilt, watch a funny movie.  You seem very descriptive, you may do well writing in a journal all of this, maybe start the day with a journel entry, get it out of your system and then do something else.  are you too sick to get out of bed? then listen to music , read or watch a comedy  in bed. 

Posted 6/4/2010 4:33 AM (GMT 0)
Dear Zippy123,
I know that doctors often just give people diagnoses for the heck of it but I've had a lot of these problems for years and years before my Crohns started. Like the arthritis I'd had for like atleast 3 years I'm sure but I didn't know what it was. And the A.D.D. my mom noticed when I was a baby but didn't have me put on medication for it until 6th grade because that's when it became a problem. And i've strugged with depression for the last 4-5 years also. And as far as my anxiety, I am positive that I was just born a nervous person. However dealing with this Crohn's has made it much worse lately and brought on the anxiety attacks a lot more often. The asthma I also found out I had in 6th grade. Migraines and tension headaches I've had pretty bad since 8th or 9th grade but my doctor just kept kind of ignoring it. I've also had trouble sleeping since sometime in middle school it just got really bad around the time I had a few near death experiences pretty recently, since being diagnosed with Crohns which led to the PTSD. The only really new things are the Crohns, arthritis, severe insomnia/possible sleep apnea and strept throat.
-Crohns disease (used to think it was ulcerative colitis)
-A.D.D.
-asthma
-anxiety (anxiety attacks)
-depression
-Post Traumatic Stress Disorder
-migraines/tension headaches a lot
-arthritis (ankylosing spondylitis)
-strep throat
-possible sleep apnea
-severe insomnia
-"constipation" which I am not. this is how it started last time. how can you go 4 times a day and be constipated. whatever..
-not so great vision or hearing

And to those of you that suggested that I have control over when I talk or think about it. Not to be rude but my anxiety is so severe that it practically takes over my life. With the meds I'm on right now and even when it is controllled I just kind of have the personality where I can't ever stop thinking about everything. Especially something that affects every single part of my life now. And when everyone tries to talk to me about it, it just makes it worse. Even if I give them a general answer I still can't help but think about it more and it just stresses me out more. My psychologist this morning told my to try getting one of those self work books like some kind of cognitive behavioral therapy thing. Hopefully that helps with my inability to block out all of my stressful thoughts.
Posted 6/4/2010 7:10 AM (GMT 0)

meowmix2 said...
I've also had trouble sleeping since sometime in middle school it just got really bad around the time I had a few near death experiences pretty recently, since being diagnosed with Crohns which led to the PTSD.

Hi Meow Mix,

Sorry to read about your health issues. It seems that you weren't born in the best of bodies. Can you talk about your near death experiences? What the experiences were like? I have no idea what happens when we die. Have your near death experience shed any light in this regard?
Posted 6/4/2010 7:14 AM (GMT 0)
I don't get tired of talking about Colitis, but I do get very tired of thinking about it all the time. I have to be very careful with my diet, pay attention to the condition of my poo, ...

I have a new job, and the company I'm working for has toilets that automatically flush when you get up from the toilet. It's so hard to see the condition of my poo, especially since I've been having issues lately with my poo not being totally well-formed depending on what I've been eating. It all started after I used antibiotics on my skin again. It was a stupid mistake I made awhile ago because my dermatologist picked an antibiotic that wasn't supposed to be so bad for the colon. I should have known better.
Posted 6/4/2010 2:51 PM (GMT 0)
meowmix said:
My psychologist this morning told my to try getting one of those self work books like some kind of cognitive behavioral therapy thing. Hopefully that helps with my inability to block out all of my stressful thoughts.

Hi meowmix (and others)

I got help with hypnotherapy for the mental issues of UC and can really recommend it for you. My hypnotherapist even gave me a recording of each session (I paid extra) so in between sessions I could replay it for additional reinforcement. I put it on my Ipod and used it at bedtime.
Realllly helped me. Did NOT cure my UC physical symptoms. Also improved my tennis game :-) (concentration and focus).

The way I approached the therapist was telling her exactly what I wanted to achieve and that I wanted a recording. Each session we worked on a different couple of problems. I also bought a hypno book later (when I stopped going to her) that had "scripts" and made my own recordings and that worked really well too. (For those who can't afford the hypnotherapist this would work well).

She was disappointed that she couldn't "cure" my UC with her therapy but I was very satisfied with the results. My DH 1.5 years after my therapy has decided to try it out for some things he wants to improve.

Although drug therapy for the mental part of UC is very useful for a lot of people it's not what I wanted to use.

Best wishes. Life is hard enough without UC but with it is a whole 'nother thing.
Posted 6/4/2010 3:17 PM (GMT 0)
I definitely get tired of talking about it at times. My mom is the only person who really asks about it often, but she's my mom so I can't get mad at her ;p

You gotta remember that people want to know about you because they care about you. That's worth appreciating.

It's annoying to talk about, especially when it's not going well. People are like "How's the UC?", and I'm like "still the same", and they go "oh...", then the mood is just kinda bummed. Now I just say "I'm doing fine" and change the subject.

We say this too often around here...actually no, we don't...it's not possible to say it too often....

DON'T GIVE UP.

I heard a woman on the radio the other day request a song that she said made her feel good. She's been battling brain cancer for 20 years and now has a malignant tumor. The DJ asked her how she's coping with it and she said "You just gotta stay positive and this song gets me in the mood" I started to cry when she said that. I felt selfish for being bummed about UC. We've all got our problems but we don't have to let them ruin our lives.

If you're annoyed with people talking about it, just tell em to shut up. ;p
Posted 6/4/2010 3:39 PM (GMT 0)
My husband also reminds me that people want to know because they care about me. So I think the family ask him and he gives updates.
I never talk about it (except to him, and to all of you!) and over the years everyone has figured out that is what I want.
And since only immediate family know about it, I don't have to talk about it to anyone else because they don't know!
That gives me peace to deal with it on my own, and know friend and acquaintances aren't imagining this grossness about me.

I think if I can cancer I would also not tell anyone until I absolutely had to. I already managed to have surgery a few years ago without anyone knowing. Maybe that's weird but it makes sense to me. This disease changed the way I think.
Posted 6/5/2010 9:43 AM (GMT 0)
Yes, i am totally fed up thinking about my colitis. my husband is also fed up of hearing about my colitis!! All day everyday feels like one long battle. Every decision i make seems to involve some thought over my colitis. I feel so pissed off that i have had this disease since 12 years old. I am now 29 years old and still battling with it, no way to turn, refused surgery (Still not bad enough for that) no drugs work for me, so i just try and get on with things. Still battling 9 weeks of loose stool but hey least it is just in the mornings!

Also suffer from osteoporosis and polycystic ovaries, migraine with aura and arthritis!
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