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I'm getting too obsessed by this board for my own good

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Posted 6/10/2013 8:18 PM (GMT 0)
The thing is, I can't come to terms with having a permanent stoma while 90% of you talk continously about having your stoma reversed or have already have it reversed. I just can't; and the small number of people on here with permanent ostomies don't change that fact for me.

Another thing which is mega pissing me off at the moment is fatigue. I wanted to feel better after surgery. Yeah, the pain has gone, that's about it. Otherwise I feel as debilitated as ever. It's not like I haven't been trying to go out, be social, etc., but I feel so crap later on the same day and the day afterwards, it's not worth it. I know it's physical rather than mental, because I know what depression and mental tiredness feels like this, and this isn't that.

I've resumed taking an antidepressant. I'm on the waiting list to see a psychologist, which I intend to make the best out of when I do finally get to see him. But as long as I keep on coming to this board, I'll continue to be obsessed. That's not good for me and it's not good for you, so I'm gonna leave for as long as it takes me to stop being utterly pissed off by my situation.
Posted 6/10/2013 8:59 PM (GMT 0)
NCOT- I read your post on my running thread and I don't take offense to it at all. I'm tired and to be honest miserable a lot lately.

I think about you a lot NCOT and I'm pissed you can't get a reversal because I know how bad you want one. Unfortunately, you got the short end of the stick. It's not the end of the world, it just means you have a new "normal"

I don't like talking about this but I wanted to share it with you. I have been going through what I call torture for the last month. My doctors have been tapering me off Oxycodone but the pain was not going away. I was crippled without the med and just stayed in bed for most of the day except for the few hours I was allowed to take a dose. After a month, I flipped out and met with my doctor and explained the pain wasn't going away. He started me on neurontin, it's an anti seziure med but is known to help with nerve damage. I've been on it for 5 days now and the pain has significantly reduced to the point I stopped the pain meds within 3 days. I know I should be happy about this but it basically confirms I have nerve damage. This is not something I want but I'm stuck with it, sort of like your ostomy.

As far as this site...It's like facebook! It's addicting and I think the ultimate goal is to get off it and get on with your life. I love everyone on here but at some point you have to move forward.

Have you ever seen Goodwill Hunting? Great movie! It's like the part where Ben Afflect tells Damon his dream is to drive up to his house to pick him up for work and find that he's not there...

Mossmi33

Post Edited (Mossmi33) : 6/10/2013 4:50:28 PM (GMT-6)

Posted 6/10/2013 9:00 PM (GMT 0)
I get a real kick out of your sniveling and whining. Please don't leave.
Posted 6/10/2013 9:36 PM (GMT 0)
How long have you been off prednisone? The withdrawal could be causing your fatigue. I remember feeling like I got hit by a bus for about 3 months due to steroid withdrawal.

Sincerely, good luck coming to grips with this all.
Posted 6/11/2013 12:35 AM (GMT 0)
This site is worse than crack-cocaine... >.>

@Mossimi - Thank you so much. I'm a bit clumsy at expressing appreciation, but just know I do appreciate your post. I'm glad that you've got back into running. I just get overwhelmed by my own misery and frustration at times =/ But truly, I am glad for you.

I do want a reversal, that I can't deny =/ I do have a small chance of a reversal via an ileorectal anastomosis. But even if the surgeon agrees to do it, the chances of Crohn's coming back and me having to revert back to an ileostomy is high. She (the surgeon) told me to think of my ileostomy as permanent, not temporary: she was quite emphatic about that point. Trouble is, I have never really accepted the stoma. If I had accepted it, then other people's reversals should not bother me. But they do. I can't rationalise my way out of it either: the feelings run too deep.

Anyway...

I'm glad that the neurontin has worked for you, but not so glad you have nerve damage. Is it permanent?

I have seen Good Will Hunting, but so long ago I don't really remember it anymore <_<. I do remember liking it though.

@Tom1 - You sound exactly like a charming 73-year-old gentleman >_>

@ByeByeUC - I will sincerely try my very best.

I've been off Pred for about 2 months. No, more like 6-7 weeks :-/ I'm beginning to think that this must be Pred withdrawal. Curse that drug!

Anyway, anyone who desperately misses my company can always click on the mail icon to email me. I do know this is not very likely, but I just thought I would mention it... >.>

PS: Esor, if you happen to see this, I hope you are okay. I have been wondering about you for the last few days, wondering why you haven't posted for a few weeks.
Posted 6/11/2013 1:42 AM (GMT 0)
I struggled with the Prednisone aftermath too. (and I struggle with depression).... for me; on the Pred I have tons of energy (though an extremely volatile and short fuse). Then when I get low doasing and off it - I have zero energy; this makes me depressed more.... etc.

I think a psychologist can be a good help - there's no way that anyone can have a happy life living with something they are not capable of accepting. Acceptance is the one of the most vital steps in moving forward and not stumbling over the past or what should have been. I hope you know my intent here is pure hearted :)

My surgery is somewhat elective - (prednisone dependent) and not emergency - I know my GI thinks I'm a bit crazy for just wanting rid of my ill-functioning colon. But everyone is different and we all define our happiness through a unique lens that our life has tinted for us.
Posted 6/11/2013 4:15 AM (GMT 0)
Yo NCOT, don't go anywhere bro.

You gotta keep these stoma lovers in check over here. ;)

Be the ying to their yang.

Much love.
Posted 6/11/2013 10:35 AM (GMT 0)
Well, glad to hear you will see the psych soon. It does sound like pred withdrawal could be impacting you - evil drug. But know that if you decide to jump off the board for a while, we're here if you need us - since you explained that you just needed to vent, I think it has helped people understand your position more :)

Take care - I'll keep you in my prayers.
Posted 6/11/2013 4:44 PM (GMT 0)
I sent you an email missy... but you didn't write me back. ;)
Posted 6/13/2013 4:54 AM (GMT 0)
NCOT,

Thanks for thinking of me. I will email you. Things got complex and crazy. Still trying to live on Boost VHC with some liquidized well cooked real foods. Still awaiting relocation of the stoma. Severely dangerous surgery even by the best of the best surgeons due to ALL my adhesions.

I will email you my gory details.

All I can say publicly for support for you is we all have "our thing". I understand that you're not wanting of a permanent stoma. BUT if it WORKS, and you can eat, gain nutrients, and waste comes out of it OK, then you have everything that I want and need. I am just giving you the "other side of the coin" from one who is still suffering with the "non-working stoma." In my email I will share some of my "recipes". and how dangerous the surgery is that I am facing and how some of my blood labs are slipping. Not a happy thing.

I have not checked on here for so long and it means a lot to me that you thought of me. I think your "addiction to the forum" is not necessarily a bad thing. We are all a group with our own issues and on here we don't feel alone. whereas out with our friends and such we cannot necessarily talk about our issues like we can here. This is sort of our safe haven even if issues arise. Sort of a family.

I will email you. Feel free to email me back. esoR

Somedude - love your sense of humor, i have so missed it.
Posted 6/14/2013 3:37 PM (GMT 0)
Hi Rosemary...as I have said before so sorry for all you are going through and continue to battle.

I truly hope a relocation is the be all end all of this once and for all for you. I realize how serious the surgery is from your comments and pray the surgeon is able to successfully take care of things for you.
Posted 6/14/2013 4:00 PM (GMT 0)
Thanks UC wife me too! RJ
Posted 6/14/2013 5:19 PM (GMT 0)
"Somedude - love your sense of humor, i have so missed it."

Hahaha, thanks! :)

I hope one day you'll feel great. You've been dealt K-4 off suit for far too long.
Posted 6/14/2013 5:29 PM (GMT 0)
Thx somedude! I agree! This is beyond purgatory! RJ
Posted 6/15/2013 7:20 PM (GMT 0)
Hi All,

I just want to say that I was so sick and almost died with my last UC Flare, my Ileostomy literally saved my life. Believe me it's now a year and 1/2 and it's not easy, but I keep reminding my self, it was a small price to pay to save me life. We are not alone, NCOT it will get better believe me. I hated the thought of an open wound/intestine poking out from my tummy area, and then poop coming out too! In my situation God had me in the palm of his hands, and he made the decision for me, it was a emergency surgery. When I look back the prednisone was the worst, I use to have these horrible thoughts in my head, and if I shared them you would think I was definitely "certifiable"!

This board helped me so much, and I did start to live my life, just a New Normal life! I haven't been on the board for close to 8 months now, just decided to stop by today! BTW I am still struggling with fatigue, my husband said I always look tired, thanks hubby! I saw and endocrinologist last week, she said long term use of prednisone can do a number on you, so we will see if she can help me after all the blood results come back.
Posted 6/15/2013 9:40 PM (GMT 0)
Yeah, I'm still struggling with fatigue too.

It's getting utterly on my nerves that I can't do the smallest thing.
Posted 6/15/2013 10:09 PM (GMT 0)

NiceCupOfTea said...
I'm gonna leave for as long as it takes me to stop being utterly pissed off by my situation.

Are you not pissed off anymore???
Posted 6/15/2013 10:12 PM (GMT 0)
NCOT

Have you had your MMA and B12 levels checked? Sometimes with an ileostomuy comes B12 deficiency as the terminal ileum absorbs B12. Shots of B12 can help a lot. Likely you are ok but just a thought on the fatigue.

If the MMA is high and B12 is low normal or low, you need the shots. The MMA is the key. RJ
Posted 6/15/2013 10:25 PM (GMT 0)

Pluot said...

NiceCupOfTea said...
I'm gonna leave for as long as it takes me to stop being utterly pissed off by my situation.

Are you not pissed off anymore???

No, I'm even more pissed off, if anything... >_>. (But less with the stoma itself and more at having all the energy and get-go of a hibernating tortoise.)

@esoR - I know I owe you an email. I am sorry for not replying sooner; I have honestly felt too tired all day to write a single, solitary thing. Rage gave me a brief surge of energy :-/ Anyway, no matter how tired I feel tomorrow, I'll reply then, I promise.

Anyway, my B12 is currently normal. As is my iron (finally). So I am sure it's not anaemia. Not sure what MMA is; I thought that was a business degree :-/
Posted 6/15/2013 10:39 PM (GMT 0)
LOL..... That is MBA that is the degree. I will await your email, I need your take on things. MMA is Methylmalonic acid. It goes high if one has perniscious anemia. Iron can be fairly normal. Next time you have blood work just ask for MMA check just to see. Perniscious anemia can make one very tired. General poplulation gets this sometimes not just ileostomates. I actually had severe symptoms of it since 2004 and was not diagnosed til AFTER I got in trouble with the original surgery that lead to my need for a stoma. Had I known I had perniscious anemia, I sure would not have had any surgery. RJ
Posted 6/15/2013 11:01 PM (GMT 0)

NiceCupOfTea said...

(But less with the stoma itself and more at having all the energy and get-go of a hibernating tortoise.)
/

lol
Posted 6/16/2013 12:15 PM (GMT 0)
Urgh, that was embarrassing :/ I posted a whinging thread by accident last night that I never meant to post >_>. I've deleted it now... :/

@esoR - Oh right. MBA. Oops... >_>.

Can you have pernicious anaemia with normal B12 though? Anyway, I'm currently undergoing testing for my thyroid. The last blood test showed somewhat high t3 and t4, so my GP prescribed me Carbimazole on the basis of that. However, I'm not taking any medication unless I get an actual diagnosis of thyroid disease. I think my GP leaps to conclusions far too quickly.
Posted 6/16/2013 4:51 PM (GMT 0)
Can have PA with a low normal B12 and high MMA. The MMA is the crucial test that most docs do not think of or know of. RJ
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