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Sorry, all. Was away for a bit of holiday; no fistula trouble, miracle of miracles, and although the pouch acted up some, it wasn't too bad as I didn't have anywhere to be or anything to do other than taking a break.

 

Then I returned and (cue the bad 80's music) "back to life, back to reality." Stress, of course.

 

Too, too much going on. Don't know what to stop. Can't make problems surrounding grumpy, opinionated, ailing father or asperger's child or dying dog go away. Can't make fistula and butt problems go away. Can't eat normally, can't exercise other than a moderate 20-minute walk without pooing myself. Earliest surgery can be scheduled is August which is not a good time for family or work. May need to wait until November.

 

What do I do in the meantime? Eat decent food (by which I mean fruit & veg) and poo myself constantly or stick to white bread/plain meat/bananas for the next several months? Do I quit work, which I love but which does, of course, add to the overall stress scheme? Even though without it I won't have a reason to leave the house and will be stuck with grumpy, opinionated, ailing father 24/7 then?

 

Just got an email from a colleague & friend who has been -- very deservedly -- promoted to an absolutely GREAT position. He completely deserves it and will do a fantastic job in it. I was reading the details, thinking how wonderful this is for him, when I suddenly burst into tears. The realisation that I will pretty much never be able to take such a position even if I were offered it -- which I never will be now -- hit me like a truckload of bricks.

 

This damn awful disease and fistula and all the CRAP have stolen so much of my life and I am so very, very tired and depressed about it all. I like to think I'm fairly strong and I want to enjoy life and "be there" for others and cope well and be a good wife/mother/daughter/friend/employee but I am just too, too sick and tired right now. Just too much and I can't handle it. I'm so, so, so tired.

 

And now I feel guilty for feeling sorry for myself and for not simply being happy for my friend's good fortune.

 

Don't worry, I know I need help. I'll be calling my doctor tomorrow to arrange counselling. I just needed to vent.

 

Gin

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When my fistula started, I sought out some therapy, after talking with my primary care doc. Granted, I don't think I'm in *quite* the pickle you're in, even with the fistula. I mean, I hate it, it gives me issue, but overall, overarchingly, my life and pouch habits are mostly easy.  I have no continence issues, I work, I can do pretty normal things as a whole, so I can certainly empathize, but my fistula is easy comparatively. Hateful, yes, but not as awful as some. 

 

I am very, very much a fan of therapy. I think *everyone* should be in it, seriously. I totally support you in seeking it out.  ��

Last edited by rachelraven

Hi Gin,

Darts....throw darts.

Get pictures off of the internet of fistulas, tape them to the wall and throw darts at them!

You need a good belly laugh (beware of the incontenence when laughing!) and a happy place to go to daily. You need a hiding place where you feel safe and protected.

I just realised that with all of the stress that we live in and support that we do not have a security blanket or thumb to suck to take it all away (I don't do drugs or alcohol so I cannot hide in that..)

You cannot live at that level of stress, non stop, forever...you need to take care of yourself first (I know, who am I to speak, I schedule my surgeries around school vacations)...Get that surgery done as soon as possible...Get a part-time helper to take care of your dad a couple of hours/week (insurance can sometimes cover it) .

I try to fast from the evening before work so that I don't have to empty my pouch (too much) at work which is not a very comfortable place to do it...you may need to re-organize when you eat and not just what you eat so that you can have a few free hours to go out and walk a bit...

My heart goes out to you...This is not fair and you need a real break from all of this stress.

So sorry for your dog...that can be the worse stressor.

Hugs

Sharon

Rachel, I am always so amazed at how well you carry on with the fistula! I hope it continues to mostly leave you alone. Heck, I hope it spontaneously heals up! This stupid one has been a nightmare from the start: back-to-back infections, pain, and drainage. I always chuckle to myself when people explain the symptoms of a fistula and they say, "Especially if you have air...." This is because I only have tiny little puffs of air occasionally, but have large amounts of frank feces daily. Blech.

 

I've had counselling on and off for coping with the health issues, and I also used to meet regularly with my daughter's AS specialist. But what is going on now is a new precedent of stress. Part of me thinks I should quit work (which, as I am only paid for 10% of my time, I can do easily) to lessen the load, but I really hate to do that for a variety of reasons. Of course, if I did quit, I could have the surgery in August; right now I'm helping run a week-long camp for English-speaking expat children that month. I definitely need some outside perspective!

 

Sharon: sigh. Thanks for your support; you're under such a load of stress yourself.

 

My dad isn't eligible for too much help because he is physically well. He has memory problems and confusion, but no dementia. He has frontal lobe issues so his inhibitions are lowered -- hence the grumpy, crabby, and even angry behaviour we deal with. Self-care is fine, as is exercise and trips around the neighbourhood. More than that and someone has to go with him or sometimes he forgets the way home. We can't trust him with money, and we NEVER can leave the kids home alone with him because he flies into a temper over stupid things randomly and with no warning... (Not Alzheimer's, either, btw.) Pain in the butt. Are actually in the process of lining up counselling for him through the local hospital's geriatric department; we are hoping 1) he'll go, and 2) it will help.

 

It's just so draining working with him, and I know the tiredness makes everything else harder, which makes my pouch act up. Between the fistula problems and the near-continual leakage from my bum, I am raw physically and emotionally!

 

Anyway, thanks for listening.

 

Gin

I think the fistula I had was the hardest thing for me to deal with and I only had one for six months. I did have a huge open wound because of it.  Fortunately, when the doctor did the take down he was able to remove the part of my small intestine that was causing the fistula.  I still squirm when I think about how it felt .  You deserve our pity.

Theresa

Hi Gin,

I find that the hot and humid summer weather aggravates things even more so be ware or get A/C because fistula plus hot weather and chaffing is a double nightmare...

Been going through more greif this week with the loss of the closest family member that I have...I am living on a roller coaster of emotions right now and my body is making me pay the price...

You first. You must put yourself first. Dad is old and sick but you cannot allow his illness to kill you...get healthy and strong and then you will have the strength and courage to help others...

Loads of hugs 

Sharon

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