I feel like I settled. I saw my life ending and I plopped down with the first group of friends that accepted me, despite the fact that they haven't been very good friends, I'm still in touch with all of them. They weren't and aren't intellectually stimulating, and now I feel myself getting dumber. I used to love English, but I don't write anymore, I don't read anymore, I barely even get to use big words because my friends and fiance don't understand them. I want to have stimulating conversation in my life, not just get drunk and high and ridiculous every time I want to relax or have a good time. I don't have to explain to you guys how hard it is to make new friends, but is the fear of what could go wrong keeping me from enjoying my life authentically?
I'm too different a person than I was almost ten years ago when I was first diagnosed, but I don't know how much I've grown. I've just changed, and it's very unfulfilling. I'm working on getting in touch with a support group, in the meantime I'm reaching out here.
Have any of you guys felt that your life now is just unrecognizable? Like, how did you get here? Where do you go from here? How the hell are you supposed to get your feet on the ground when everything around you is up in the air? 
Feeling lost, Thanks for reading if you stuck with it, I know I'm kind of all over the place here. I would appreciate any words of comfort or wisdom from the people who actually know (somewhat) of what I'm dealing with firsthand.

Last edited by KelseyHey2308
Original Post

I will be praying for you and sending good vibes your way. I found a support group at my local hospital and it makes a difference to be around people that are going through what you are going through. Sometimes people that don't have to deal with this just don't get it. I find as I get older I need to weed out the people in my life that don't share the same values/goals as me. It is hard and a lonely feeling so I understand how you feel. A lot of people try to party and drink away their pain, and it is hard to not get caught up in it if you are close to them. Maybe through your support group/local hospital you can get a recommendation for a counselor? I always thought therapy seemed silly until I went to talk to a counselor and they helped me to evaluate my life and make a plan to move forward. I wish you the best of luck. And I don't say this to trivialize your problems, but one thing I had to constantly remind myself is that no one feeling/emotion/situation lasts forever. Even if you feel stuck, things can get better. Try to talk to someone and make one small change at a time. Thinking of you. Know that you are not alone and you will make it through this. <3 

 

It starts with the Pouch!
That I think is the root of my problems.
Mine is not working.
So in my situation it starts with the Pouch.
I'm done with it and it's coming out Monday.
I will start my life anew. 
Yes... I am scared.  As to what is coming.
Yes... I am angry I am gonna lose my pouch.
But why keep it when it's ruining my body... And my relationships?

So... I am not letting it take any more of my life away.
I will deal with an appliance.
I will get my health and my sanity back. Yes... Sanity.
This thing runs all aspects of your life when it's not working.  From the he time you get up... And actually all night too.... 24-7.
Period.
I am done fighting with it. Day in day out.
Not  knowing what kind of day and what problems will it be today.
I am done.
Not fighting for it.
Fighting with it.
Good luck to you.
May you find the right path.
I know one thing.
Alcohol is not the right path.
Sounds like you have enough going on without bringing that into the picture.
Like I said.. Good luck.
Richard.

Richard said a lot that I was thinking as I read your post. It probably is time to either have your pouch removed, like he is doing, or to have it diverted to a permanent ileostomy, like I recently did. 

 

I think you have grown up while your friends and fiancé have not kept pace with you. You are too young to settle. You need to find your purpose and get on with living. Break ups are difficult.  We just celebrated our 40th wedding anniversary and last year at this time we were discussing permanent separation.  I understand your loneliness.  You can feel really alone despite living with someone. Please don't sell yourself short. You deserve to have as full of life as you want.

 

When you have a partner you should be able to discuss how the financial resources are used. It doesn't matter who brings in the income.  Usually both partners make different amounts and there is trouble when the one making the most thinks they can dictate or rule all.

 

You self esteem is there. You know you need to make changes. I don't mean to pack up and walk out tomorrow.  Hopefully you can make a list of life goals. Go to the library and check out a few self help books......they are free.Money is tight so I  suggest you find counselling somewhere affordable. For example you might be able to call your local United Way for help locating a therapist. Some non profits offer counselling on a sliding fee basis.

 

It is good that you got it out by posting here. There are lots of resources on the internet. 

 

Take care of yourself. You have a lifetime to design.

 

 

 

Hey guys,
Kinda wish I could delete this since I was such an emotional wreck when I posted it. My fiance just lost his father so I'm trying to cut him some slack, and I'm very bad at standing up for myself. I'm in counseling and see a psychiatrist, she put me on a new medication just yesterday. We finally have enough money coming in that I can go to acupuncture. A lot of couples have problems, he's done so much for me I owe it to both of us to try to work out our problems before I pack up and leave. I told him I want to be healthy enough to dance at my own wedding so we're not walking down the aisle tomorrow or anything like that.
As far as the ileostomy option, I know for a lot of people that works out, but it's also just a different kind of headache to deal with. I have gastroparesis and gastritis and GERD and other things that would not be settled simply by setting up an ileo. Moreover, my first take-down surgery was reversed, so my surgeon does not favor the ileostomy option, lots of scar tissue from improper healing due to MRSA and whatever else. There is no easy answer or opt-out button in any case. Right now they're talking about lysis of adhesions... It's all very messy and complicated like many things with IBD.
I felt really alone when I posted this... at 3AM. Unfortunately that public post does open me up to criticism and advice that I don't necessarily agree with, but I do appreciate your kind words. Tonight I'm going to my first real life support group, I think it's important people hear my tone and occasional sarcasm which is difficult to sense online. I go to acupuncture and find that very helpful, finally had a little money come in so I could go to a couple sessions and I'm sleeping better now. Sleep is HUGE, and a lack of it can really drive ya bonkers.
Thanks and have a super day!

Hi Kelysey,

First off, yes you sort of can ask Jan or someone else if you can have the post deleted...not sure how they do it but they can.

Next, do not apologize.

You are suffering, you are in pain. You are allowed to rant, rave, cry, complain and generally say anything that you need to (within reason) to help you to get through it.

So, the group of friends are 'dumbing you down'? Lots of people do.

Doesn't mean that they are bad just, as you said, different than who you are on the inside. You may need to start getting new ones. (not as easy as it sounds)

A lot of us have settled one way or the other. When I had my pouch done (after a lifetime of illness and surgeries) I was 18.

I was isolated and a victim of my limited environment.

I was surrounded by those who said 'poor thing, who will ever want her?' and those who were planning life once I was gone.

I married the following year (between step 2 & 3) because I was told I had to and he was more or less bought off to do it. It was a disaster. It lasted 2yrs until I healed. 

Once I was healed and looked around with healthy eyes I realized what I had done (or what was done to me) and decided to "get the hell out of Dodge"...as far as I could.

It took me 5000miles to find peace.

I had to run far and fast to find a world where I felt like I belonged...I never went back (other than vacations) and am so lucky that I did.

You do what you need to do to be the person that you want to be. Do not settle just because you think you should or 'they' tell you that you should. 

You are strong and intelligent and have suffered enough to deserve a good, happy and healthy life.

Sharon

Kelsey, I can delete your post, but the whole thread will go with it. Just let me know.

 

You've gotten a variety of thoughts offered. Don't think that you need to follow anyone's advice. It is good to vent even if you don't really need advice, but just understanding. We each have our own story and experience.

 

Jan

I just wanted to offer a few titles in case anyone else is looking for what I was actually looking for with this original post. Two by Toni Bernard including "How to be sick" and "How to live well" and another good book on dealing with dramatic changes in general (I read it ten years ago in high school after my dad died) is called: "who moved my cheese?" By Spencer Johnson

http://myfruitfulhome.com/book...ith-chronic-illness/

https://www.goodreads.com/list...nvisible_Illness_es_

Also in the spirit of being helpful and moving forward, I've included some links. Next time I will just google instead of asking you guys. I feel like because of Jan's first comment everyone took the "playing the victim" card and ran with it without offering any requested advice; instead only shared wisdom on how to stop feeling sorry for myself. The reaction to this post deeply hurt me and is the reason I haven't logged on since. We all need to consider our tone and the weight of our words before we type them. I can't count how many times I've been told to "stop doing this to myself," I never expected it from my own community. I hope this finds you well and you bring forth compassion in lieu of preaching in the future. I thank you for your support over the last five years and am now choosing to say goodbye to online support groups. I hope this post helps anyone. Thanks again for help in the past. 

Kelsey, I'm glad things are improving for you, and I am sorry that we did not seem to understand your needs when you first posted. We are only human with human foibles, and hope you forgive them, as we only try try to help based only on our experiences. Thank you for the links. I am sure that many will find them useful.

Be well, and please return whe you wish, as we can use all the help and insight we can get!

Jan

Last edited by Jan Dollar

Wow. 

Alot has happened since this post was started. 

4 days after I  had my pouch removed.  So I lost track of it.  Now I am eight months out and have my life and mind back.  I'm not angry I lost it.  I am actually happy it's gone. 

But I do hope you have found a way to deal with what you have.  We all know it's tough.  I was fortunate.  My wife and family understood and were concerned about my health.  Not any more. 

I hope you can find peace with it like I have found peace.  Of course I had to go in a different direction.  But you don't have to. 

As for being around people.  I have always hardly had friends outside of work.  I have my family and it's always been enough for me.  So I don't have an answer for that.  But I can understand it.   Having an intelligent conversation is hard where I work.  But when I do get into one I relish it. 

Richard. 

Kelsey, I wish you well on your life journey. Since you mentioned you love to write and read I just wanted to encourage you to make time to write. The desire to write is a beautiful gift that calms and strenthens the soul. . It is therapy to you yearning for deep conversation at a different level. It can later be shared with others as therapy or entertainment depending upon the topic or adventure you chose to write. Settling is sometimes just the pauses between chapters. Life has constraints, our writing has none. LIfe constraints help to develop the character of our writing. Beyond that, write free with reckless abandon. 

Last edited by Gutless Wondergirl

I'm sorry Kelsey. I  hate it when people have and do tell me to "suck it up" or how to cure me with this and that.  

I reread my post and I understand how you interpreted it.  I didn't mean to tell you to fend for your self when I suggested the library and so on.  I wish I could have helped you but obviously made things worse. 

I am still in therapy and see a psychiatrist too, I had more than this to deal with.  Some never need counselling.

We are all different but we've had similar problems. I am glad you are doing better.

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