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I know i would benafit from as support group. I find it so lonely. No one unless they have gone through it understands. I just wish i had some one to talk about it with. I go to therepy but she is a student through a college and its free but she does not have a clue. I am unable to work the last year. So many infections in j pouch everything stopped working and went to Cleveland Clinic. By then had no control and alot of pain. Did a scope and he said because of all the infections that its very sensative. He put me on opium/belladonna and i take a suppository every 12 hours. It has saved my life but now i cant work because the side effects are so strong that i have a hard time doing the littles thing and have to lay down in the middle of the day for over an hour on my left side. I still leak and have accidents but i can deal with that. Its just so hard from working full time my whole life to now not working and loosing an income and now down to one. Took me a long time but i stopped saying it was all my fault ruining our retirment and everything but i finnally comes to terms and know its not my fault. Some things our out of our hands and in gods. I just get so lonely and the medicines make me so tired. I have gained alot of weight due to being home and depressed. I live in ohio and wish so much i could go talk to others and here i know exactly how you feel. And really do my family is wonderful but i dont talk alot about to much. Sorry to ramble just lonely.
Thanks for listening
Frances
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Well you are lucky because I do know exactly how you feel. I was always in control of everything. I am the sole provider for my family and I have been out of work since January. I do have disability benefits from work but they only last so long to give you full pay and then you drop to a % which does not cover a mortgage, bills, and supporting a wife and 3 kids. Not only does the surgery take a toll on you physically but the emotional, mental, and phycological effect that it has has been even harder to overcome. I have felt in the last couple of months a range of emotions I have never felt before and have a hard time dealing with. I have never had anxiety, depression, or any state of self worthlessness until post operations. I am going to therapy now to learn how to cope with these and unfortunately need medicine to help stay in control also. I've been sitting around going crazy while I feel the world is passing me by. I know I'm on the path to recovery and have made a lot of improvements in the last couple months but still have a lot to work on. You are right nobody understands unless they have gone through the same thing that's why this website is available if you don't have a support group in your area. I think this is how a lot of us feel and its completely normal. I was also blaming myself last month for having to scrounge up money to pay my mortgage. Its not yours or my fault this happened to us its just the hand we were dealt and I'm still trying to get over that also. Do not get discouraged. You are not alone there are plenty of us that feel the way you do. You have made it this far without giving up which is an accomplishment in itself so if I were you I would feel a sense or pride rather than discouragement. Keep your head up things can only get better for you I believe. Good luck.
Thank you so much phonix2g for your words thoughts and kind words. Being the sole bread provider i cant imagine the stress you feel. Its so nice to here from someone that knows how i feel because its so lonely when no one can. Its not there fault they dont and have been wonderful but like i said so lonely. All my medicine makes me so tired that i struggle to do things but i make a list in the morning and get those things done. My husband tries to understand but when i say i cant go with friends for day trip to the beach when its a 2 hour ride and i wont eat but we will still have to stop a couple times and when we get there where is the bathroom. How am i sapossed to take my suppository and then lay on my left side for an hour when everyone is riding bikes. He does not understand the fear and how i feel knowing that it will be so hard on me. He tries but really does not understand. I have only told very close friends and family about my situation its something very hard to talk about and tell people and i am a very private person. we are sapossed to go tomorrow and i dont want to go but if i dont then he wont go then just more guilt. So i will go and try to figure it out and be a mess all day. I have always been a positive person but find it so hard. I have read a bunch of books but nothing really has helped. I hope therepy helps you it has not seemed to help me. you sound so put together and i wish you luck and courage to get through days finding happyness and peace.
Frances
I was fortunate enough that a member on here lives down the road from me..seriously like 7 minutes away..if that. Today i actually met up with him face to face after talking for a month or so and its really nice to be able to talk with someone who gets it because they are going through it. i 100% suggest trying to find a group in your area, even like suebear said a group that has people in it who just have some type of suffering would be good to for you to speak too for the motivational aspect.
Yeah it is great having some on to talk to & bounce ideas off. And good to finally meet you dgtracy.

Frances, call some of the local hospitals and see if they have a ostomy support group that might meet there, that is as close to a j pouch group here in Charleston as we can get. I have yet to go to a meeting since cant get time off work to go, but my wife talks to the lady that runs it for help and info since my 1st surgery a year ago, she calls and checks on me every month.
There is a very good CCFA support group in my area which meets at the Guilford, Connecticut police station community room the 3rd Tuesday night every month. It's a mix of people who have UC, Crohn's, indeterminate Crohn's/Colitis, J Pouchers and ileostomates. We have pretty much the same core group every month. The people in the group are generally a bit younger than me but Internet savvy and very well informed. Most of them seem to be managing their illnesses very well. Some very good information is exchanged at this group. I was advised at the last meeting that another support group will be starting in October in northern Connecticut (Glastonbury) if anyone is interested.

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