HealingWell
Search Close Search
☰

Post takedown worries and emotions

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/22/2011 12:48 PM (GMT 0)
Hi guys,

I feel like an idiot for being all worked up over little things, when I should just be being thankful that things are as good as they are. Because, really, they are quite good.

I'm only four weeks and a day out from takedown surgery right now, and I've got myself all freaked out. The first two weeks or so were very, very good. I felt great all day and wasn't hitting the bathroom very often at all. I would get up once per night and was sleeping quite well. The only trouble was that everything was coming out pretty watery. The past two weeks, my days are still good, and things started to thicken up, but I'm also having some bleeding and now I'm getting up twice almost every night, not sleeping well at all, and yesterday I felt very lethargic and feverish although my thermometer insisted I had no fever. I hardly slept last night. It's just got me scared, why are things getting worse with time instead of better? I've been wondering if I've got cuffitis or maybe pouchitis, although I imagine both of those feel worse than this, and I'm thinking of getting checked out for those soon, but I'm just wondering how they diagnose either of those?

I also just want to know if anyone can sympathize with the emotions I'm having lately. I'm very, very sensitive and kind of aggressive lately. Mainly on the internet. I've always enjoyed debating on internet debate sites, but lately I feel like I perceive everything as a potential jab at the ill and I'm getting offended and angry all the time. I just don't feel like I'm having normal emotional reactions to things at all. I'm nervous to go back to college (fortunately I have till January) because I'm just not sure how I'll react to that environment.

Basically I need a big verbal hug. Can anyone provide?

Posted 9/22/2011 1:07 PM (GMT 0)
You are way early in recovery!

Expect ups and downs your first year. Things will get more predictable and consistent but it will take time.
Are you taking fiber? Imodium? Are you keeping a food log and measuring transit time? Those a few tricks that can help you get some type of control but mostly time and patience will be your best friend.

Sue
Posted 9/22/2011 1:45 PM (GMT 0)
My son Dillon also had "ups and downs" for about the first 4-6 months. I remember about a month after his takedown his frequency went way up and became watery. I found him in the middle of the night sitting on the stairs, outside the bathroom, having pretty much an anxiety attack. We called the surgeon first thing in the morning asking about pouchitis and we were told that pouchitis simply does not happen in such a new pouch. She said it is completely normal for your frequency to go up and down over the first year but that most likely he had just contacted a "normal everyday bug" that everyone gets every now and then and results in the runs.

If you have concerns it will greatly set your mind at rest to call your surgeon. You have to remember that you have spent years finding that when "things" started to be not so good that very often they went downhill from then on (or at least it was that way for us). It will take you a few rounds to realize that now the new normal is for "things" to run their course and your body will get better on its own...no trips to the doctor or hospital. We have had about four incidents since Dillon's take down when we thought things were going sour and every time , after a few days, he was feeling completely back to normal.

We are always here to give cyber-space hugs..... Please let us know how things are going

Cathy
Posted 9/22/2011 2:56 PM (GMT 0)
Good morning,

I wish I could give you a real hug, but be assured that we here...we feel your emotions and hope that it feels like a blanket. You will have your ups and downs regarding your pouch. You also have to play around with fiber and imodium during this time. Listen to your body, use a food log, and when you are scared, ask here/call your doctor.

I myself haven't gone for my takedown, I had acute diverticulosis and had a coletomy last year which had several complications, hospitalized 5 weeks and gosh, recovery was hard for me. It's been over a year and I am septic regarding the takedown and how my motility will be on my small. I feel fantastic now, both physically and emotionally and just don't want to suffer anymore. You are so much younger than I, I'm in my 30's and just can't imagine your emotions and how your coping at your age. I too felt like the world was against me. I stopped doing things that I enjoyed, thinking life as I knew it has ended. My friends and family, no one understood and their comments were at time just down right insensitive. So, slowly I would drop the subject, and if it persisted, told them their not being a good friend and I ended our friendship. With doing so, I developed a sense of esteem and inner strength that protected me because I'm being proactive and protecting myself. With time and health permitted, I started doing more for myself, tried new things and felt like that ill cloud blew away and I've never been more at peace. Lately I've been called by 2 friends 'lazy' because I haven't attempted the takedown procedure. I've been told by my sister 'who would want me if I chose to keep my ostomy.' Can't believe it but doesn't bother me one bit. I have my moments, I'm scared regarding my future, I've been scared to go back in the workforce. But I started to do volunteer work, get my feet wet regarding the world's perception. With time, I'd like to go either back to work or school for a new profession.

Hope you feel better and start a emotional/thankful journal. In there you can state short-term goals. In doing so, you might see what you do have and also feel more productive.

Best of wishes-Christine
Posted 9/22/2011 3:06 PM (GMT 0)
If the bleeding continues, that needs to be addressed. A little bleeding is normal post takedown but it shouldn't continue. Your surgeon can diagnose you for pouchitis or cufitis by your symptoms and sometimes they take a quick look-see with a scope.

And yes, I can relate to your feelings and I can tell you that you will feel better with the passing weeks. Best wishes!
Posted 9/22/2011 4:49 PM (GMT 0)
Big hugs to you!

I've not even had surgery yet but I am ALL OVER the place emotionally. Moody, sad, annoyed, scared, and even crying for no reason sometimes. I've been told it is totally normal to have unusual emotions when you have been ill for a while or have gone through something like surgery. It's normal to feel unusual and not like yourself for a few weeks.

As for college - I just graduated college and was sick for the last 3 years of it. There were good and bad days but after what you've been through you can totally do it! It's great that you've already had your surgery and you still have more time to recover and prepare, so keep your chin up! I am sure by January you'll be ready and you'll have lots and lots of good days in college :)

And like you said, you're pretty early out of surgery so your body is still adjusting. It's also that time of year again when people start getting sick so perhaps when you weren't feeling well you were just fighting off a little bug or something?
Posted 9/22/2011 9:26 PM (GMT 0)
The joy and gratitude you felt for being better is completely real, but you've been through a lot and there are other emotions in there too. There's loss, there's anger, etc. It's not a fairy tale where now you go and live "happily ever after." No one does that.

I sympathize completely when I read about your feelings. When it looked like things were going great for me (before my recent turn yesterday finding out that I need surgery next week), I was feeling totally overwhelmed, and also feeling judgmental about being so overwhelmed -- why am I feeling this when life is so good now? But a lot of it was grief.... for being sick for years and for missing out on a lot of things. Maybe you're having a similar thing that's manifesting more as anger?

I don't think it's helpful to think about whether your feelings are normal or not.... your whole situation is not normal, and your feelings are information. To me it sounds like you're mad that things aren't going as well this week as they were and that sounds so reasonable.... maybe if you give yourself permission to be mad about what you've been through, you won't be so mad at strangers on the internet....

My recommendation would be to see if your school has a stress reduction class or something like that -- a lot of them do. This can give you tools to cope w/stress that can increase your confidence that you can handle things.

And, um, not to be condescending or anything, but I teach college, and it's quite common for people your age to take things too personally.... not pleasant for them or for me, but it's not something that I find shocking or that makes me think they shouldn't be in college.... just part of growing up to learn better emotional skills, and part of my job to help students do so. From your other posts, I think you're very mature, which doesn't mean perfect all the time, for any of us. School will be fine.... you will be angry sometimes then too, but there will be so much more.

Oh and didn't you start college and then have to leave? Everyone is nervous at the start of college, and you are starting over.... I'd be worried if you weren't concerned.....

Hugs across the wires and wirelesses....
Posted 9/22/2011 11:57 PM (GMT 0)
Guys, thank you so much for your kind posts. I will reply in more detail later when I have more time to do so. For now, just hear this: I figured out why I'm feeling so crummy. See here: https://www.healingwell.com/community/default.aspx?f=33&m=2218569
Posted 9/23/2011 12:22 PM (GMT 0)
Sounds like maybe I was off in my response, but so glad you found a concrete answer. Seems easy to miss the mark on emotional things with this kind of communication. Hope you feel better soon!
Posted 9/25/2011 4:27 AM (GMT 0)
First off, how did our names happen? haha What a coincidence!

Not only that, but we are around the same age. I'm 21- you're emotions are perfectly fine for someone our age undergoing what we are going through. If you ever need someone to talk to around the same age, shoot me an email! It's in my profile!

Lots and lots of hugs and support! Stay strong and you will get through it!
Posted 2/28/2016 11:15 PM (GMT 0)
Hi there.. My name is Sonny I just had my takedown on 2/19/16 and I'm extremely new to this site I seen your comment about Imodium I've been on them since 12/15 for the ileostomy I was on but now after my 2nd surgery takedown I stopped taking them cold turkey because of constipation and I seen what you said about having withdrawals from stopping and it really got me thinking since I stop I've experienced emotional mood's lack of sleep nervous sweats and chills and I wondering if I'm going through the same ? ..., I hope your doing better now
Posted 2/29/2016 3:06 PM (GMT 0)
Sonny, I am sorry you're having some kind of withdrawals. I took Imodium when I had my loop and I stopped without much issue, but it sounds like people's experiences are different. This thread is from 2011 so I doubt the original poster is active. I had takedown in November and the first few weeks were very tough. I was in and out of the bathroom constantly. Now, after a few months, things are much more predictable. I haven't taken any Imodium since loop. My surgeon said it's good to wait and see where things are before you take anything.
✚ New Topic ✚ Reply