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Ulcerative Colitis
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Posted 8/10/2008 9:52 AM (GMT 0)
Ok so I have just spent the last 10 minutes crying into my pillow. Decreased pred to 2.5mg and things are not good (actually started to get worse when I decreased to 5mg). I am just done with this it's really starting to get me down.

I am supposed to be going away on a girls weekend next week now I don't know if I will be able to. This disease always spoils my fun.

My husband just took my two little boys out I suppose to give me some time to myself as he can tell I am down but then that upsets me because I feel like a failure as I can't join in the fun things with them.

My moods are always negative. I always seem to be either angry, sad, guilty, I feel like a victim all the time and I don't like it aaarrrrggghhhh.  My moods low but my dr doesn't listen to me. Will call them tomorrow to get some advice but it is at times like this when if he said come in for surgery tomorrow I think I would actually go. Instead they give you more drugs which make you feel human for a little while and then the rollercoaster starts again.

Ok tears have started to fall again - I need to give myself a slap and pull myself together.  Sorry to rant on but you all know how it is.

 

Posted 8/10/2008 10:51 AM (GMT 0)
I hope you feel better soon, I would cry for you if I could. These boards really put life into perspective.
Posted 8/10/2008 11:40 AM (GMT 0)
((((o))))) tums...come on, you can do this.  I have been fighting feeling fed up and down all morning. I am now sure I'm heading into a flare up, cramps this morning were awful. I finished my last 5mg pred on Friday night after 8 weeks from 40mg.  Two weeks ago I started to recognise symptoms.  It is a conscious decision to pull yourself out of it.  That's what I'm doing.  Force yourself to be up even if you don't feel it. I feel angry this morning and like a bag of cats, the kids are annoying me and I'm uncomfortable. So what do you say we work on this together. you are officially not on your own today as I'm right along side you.  

Bright side - hubby has kids, go and get yourself into bed and turn on the tv (couch if no tv in the bedroom) throw on a movie and just relax. feel sorry for yourself, pamper yourself but decide at the end of the movie that you will rid yourself of that feeling and change your mood. you don't have to be dancing on the ceilings just move over from feeling angry and a victim.  Become someone who's feeling unwell and needs looking after.  Let your husband mind the kids today and just do nothing.  there is nothing you can do to change it so you may as well go with it. 

Deal?

Posted 8/10/2008 11:45 AM (GMT 0)
In saying all of that I appreciate that you have had UC a long time and I have only recently been diagnosed but I've had it for over a year without going to the doc. I want to clarify that I'm not minimising your suffering. Lx
Posted 8/10/2008 12:59 PM (GMT 0)
Hey Tums,
I'm right there with you. Just had hubby take our son out yesterday so I could have a break, and I just sat here wanting to be with them. I've been talking to my sister-in-law lately who was diagnosed with MS at about the same time I was diagnosed with UC. She's been seeing a counselor, and I'm thinking its time for me to do the same. Maybe you, too, could benefit from talking to someone to work through all these emotions. I'm sure there are psychiatrists out there who specialize in helping people with chronic diseases. My GI has never mentioned the mental/emotional aspect of having this disease (which I think is quite negligent of him), and I've been resisting the idea of taking anti-depressants. But now I think its time to be proactive and get my life and happiness back on track. Sounds like you're ready, too.

I hope you're well enough to take your girls weekend. Even if you're not 100%, I think you should just go. My symptoms totally decreased when I took a vacation a few weeks ago. The lack of stress really can help.

Good luck!!
Posted 8/10/2008 1:58 PM (GMT 0)
Thanks for your support, I did do the movie thing (something about a water horse - loch ness monster) sons movie by the way but unfortunately had to cut it short as due in at work in half an hour.  Like I can be bothered but anyway think I have been enough times so I can get through my shift without running to the loo. Will re-commence DVD tomorrow morning hopefully in a better mood.

Posted 8/10/2008 2:07 PM (GMT 0)
fingers crossed for you.
Posted 8/10/2008 2:17 PM (GMT 0)
Sorry to hear that you're feeling so yucky. Hope it helps a little to know that we can relate! Totally with you - hate the rollercoaster. If you can, try to do the girl's weekend. I did one to New York City when I was in a pretty bad flare, and I did miss out on some of the things they did (because I didn't want to be too far from a toilet!), but I'm still really glad that I went and had some girl time. Hope you're feeling up to it!
Posted 8/10/2008 2:27 PM (GMT 0)
Remember it could always be worse, like having UC while living in poverty with no meds and no comforts. Hang in there as there's always blue skies even after the worst storms.
Posted 8/10/2008 2:54 PM (GMT 0)
Hi know what you are feeling and i have only been dx since may.Am on my own at moment kids at nanny's hubby paintballing and trying hard to not go to toilet as i know it will be just wind(or i hope so) I don't know what i would do without this forum just remember united we stand I keep telling myself that there are a lot worse than me sometimes it helps go have a nice bath and let hubby take charge for a bit be pampered get yourself feeling better and enjoy your girls weekend
Posted 8/10/2008 3:45 PM (GMT 0)
Yeah, I have those moments, too. Before I used to just cry for a while, but lately I've just been shutting down--like not talking at all and just going through the motions of stuff. And other times I'm just fine. I usually try to watch something funny and/or tell myself it could be much worse (ex. living in poverty, having cancer, etc.).
Posted 8/10/2008 5:19 PM (GMT 0)
Hi Tums, so sorry you are feeling so down right now. Have you tried any of the sterroid enemas? Perhaps they may help you better than the oral pred, which much less side effects. It's definitely worth a try, I would think.
Posted 8/10/2008 7:19 PM (GMT 0)
I would encourage anyone thinking they might need some counseling to deal with this chronic disease to seek that counseling out and go. It really cannot hurt, and sometimes, you just need someone to listen to you and empathize with you who you can be perfectly honest with and not risk alienating them. And then, that person will give you some ideas about how to deal with the problems by thinking about them differently or reacting differently, and overall, you will feel listened to and more empowered to deal with the many issues of having a chronic illness.

Good luck to each of you. Having a chronic disease or chronic pain surely can lead to depression. As someone who's worst illness is depression (the UC I have pales in comparison), I can say that getting help for depression or even just a case of the blues can change everything about how you think about yourself, your life and your illness.

Good luck!

Mitz
Posted 8/10/2008 8:05 PM (GMT 0)
I hope you are feeling a little better by the  time you read this .

Its quite ironic because ive got the feeling im about to go all through it again after 12 months remission, and for the first time since ive had this condition i cried this morning , during my 6 month flare last year one of my best mates was dying of lung cancer and boy does that put things in perspective ! BUT having said that the blood and mucous and pain have returned ( and  i have faithfully been taking my meds) and i just feel like crap .Gonna have a blast at 5 days pred and see what happens .

I really really hope you are ok ,

Kerry x

Posted 8/11/2008 4:16 AM (GMT 0)
Hey Tums - hope you're doing better. I notice in your signature you are on the same meds as my husband. Do you think the dosage needs to be changed at all possibly? I say this as hubby was on the asacol and prednisone before the azathioprine and that did not work. He was on 6 then upped to 12.

In May started on 75 mg of aza which was low along with 40 mg of prednisone. By July 3rd there was a change in that he felt better - not great but stopped being a recluse. His taper of 40 mg was a very slow one and the Mayo clinic upped his aza. to 150 mg in Nov. A month later he was off the prednisone. (He was on and off prednisone for almost 2 yrs and was steroid dependant.) That drug makes you so depressed among other things.

I'm just wondering if your 100mg aza. needs to be higher and if your asacol needs to be higher? As much as I dislike the prednisone he seemed to be tapered too quickly when he was on it several times. So when they started the 40 mg with the introduction of the aza. after reading so much on the boards here I requested a much slower taper to see how that would work.

Also the advice of treating from both ends from this board...when he went to Mayo clinic we also requested a different rectal med as he was having a hard time with the liquid type and was switched to the cortifoam which really helped make a difference.

It is so tough - it is depressing to always feel lousy - add to that having a family that you can't interact with the way you want to. This forum helped us so much and gave me the insight and sanity to cope with this and gave me so much information to share with him to help him.

This is a great place to vent, get information from, sympathy or whatever you need. Hopefully you will have better days ahead and hopefully soon.
Posted 8/11/2008 5:25 AM (GMT 0)
hey, don't forget that pred makes one moody and angry and sad and all that emotional stuff.

i went thru the moods like every few minutes like a freakin schitzo when on pred.

just wanted to throw that in!  once your off the pred, some of these emotions and mood swings and feeling just go away.

hang in there

Posted 8/11/2008 11:46 AM (GMT 0)

Just phoned hospital and have appt on Thursday. Nurse didn't want to increase my pred said she didn't want to muck about it as it seems I am steroid dependant and said I need to come in to speak to the doctor about it and that he might want to stop it. I said what will happen then and she said the doctor would answer that.  In answer to previous post I think 100mg Aza is the highest dose for my body weight and here in the UK for some reason they do not recommend taking anymore than 6 asacol.

I have tried steroid enemas in the past was taking them for a good 2 months straight but was told that as I am not bleeding (I only bleed when in full blown flare and basically incapacitated with the pain) they probably won't be doing me any good.

Posted 8/11/2008 1:53 PM (GMT 0)

Good luck --  when it was decided to start the aza for my husband 40mg of prednisone was also started to "jump start" the aza.  Because he was steroid dependant and because of so many posts I sifted through here and the same advice for a slow taper especially for those like my husband I kind of insisted on a much slower taper this time.  All the tapers in the past were just too quick for his body.  So it was basically a 7 month regimine with a slow taper along with the aza.  As I said he was started on 75 mg low dose purposely so they could monitor how his body metabolized it (blood testing - promethius testing after 3 months).  It was 6 months later that the Mayo clinic decided to up it to the 150 (hubby weighs about 175 lbs).  He still has blood work done every month for one year monitoring him.  In November it will be one year - his blood work is great - so we will see what they do in November regarding his medication prescribing from a month to month basis.

If you are steroid dependant then possibly you need a much slower taper.  It is a pain in the neck with all the side effects that go with it.  Hubby as I said finally got off it early Dec. and every month we would notice various side effects leaving him which was terrific.  Still some traces here and there but to finally be off it and hopefully never to go on it again.....fingers crossed over here.

I know this forum is not a subsitute for medical opinions but with all the experience here and seeing what works for so many and there is a common thread in a lot of these posts to relate to.  With the information and insight I have gotten from here I discuss with my husband and his doctors and advocate for him and several points of information I have gleaned from here have definitely helped him.  So I am a HUGE cheerleader for Healing Well and I tell anyone and everyone I know including the doctors that this is an invaluable resource and support network for those willing to take the time and effort to check this place out.

It's too bad that this disease is such a trial and error thing and what works for one may not for another.  Six months here and there trying this and that is so frustrating to find what combination works for you.

Try and have the best attitude you can.  When you need to have a pity party - have it.  Sounds like you have a wonderful hubby.  It is very important for the spouse to understand this as well.  In the beginning I know I thought of it like many others and not fully realizing and understanding how debilitating it is. When I found this forum and read and read the posts for several hours it really hit me and gave me a total understanding.

Try and focus on the positive good things in your life when you are down.  My husband who is the most upbeat positive person I know turned into magilla gorilla.  He always says he knows there are people out there dealing with far worse than he is dealing with.  The prednisone was the worst part of it with his crankiness and of course the pain.  BUT things WILL get better and keep focusing on that.

I truly wish you well and hope you notice some change for the better really soon.

Posted 8/11/2008 2:34 PM (GMT 0)

Thanks anotherUCwife, you are right in all that you say and your husband is a very lucky man to have you. I do have an understanding husband and he is good with taking the kids out etc when I am feeling bad but he has never researched anything to do with this illness, does not ask too many questions in fact none think it is just his way of dealing with it.

My brother also suffered from UC but had to have surgery ( he is also a doctor) so you would think he would be a great person to speak to but no he doesn't like to speak about it either, again it's his way of dealing with it.

And then sometimes I just feel like I complain all the time anyway that everybody is sick of hearing about me so now I don't say anything at all.  A good example of that is I had a suspicious mole removed from my back (thankfully everything came back ok) but I didn't even tell my husband I was having it done. Then a couple of days later he noticed the stitches on my back and said "oh my god whats that!" and when I explained what I had had done he said "you never tell me anything anymore" which we kind of just laughed off.  And that is where this site is fab I can vent, get answers maybe try and answer other peoples questions. At least now I have someone to talk to.

Posted 8/11/2008 8:05 PM (GMT 0)
Hi Tums,

I think we are kind of in the same boat. I am on azathioprine and trying to taper down to 5mg of pred. My last taper, I took aspirin and went into a flare, I do not think/hope that is a coincidence. I began flaring in the middle of my vacation in the Dominican and I tried so hard not to let it wreck my vaca and did not even tell my husband that I was flaring for a few days and then he caught me crying and I told him and he was good but still for me, it stunk!!!

I know how you feel, it is so upsetting starting to flare again. Please let us know what the Doc's say. I am going to one of the top hospitals here in the US next week and really looking forward to it and will post info from my visit.

I do not know if I can take 5ASA's ever again, I hate pred, I don't know if aza is failing me, I may have to switch from aza to cellcept and I guess it's just remi left for me unless I can get on a Humira study. Then surgery..........AAAAGh so confusing!
Posted 8/11/2008 8:09 PM (GMT 0)
How are you doing today Tums?
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