Family responses to sickness

Mahshelly,
Family is often a problem when it comes to us and our disease...most of what goes on is inside of us and people often don't get it. They get the fact that you no longer have a colon (you should feel better now, right?) or that the bag is gone (what a relief, you feel better now, right?)...no matter where we are in this, they are pretty sure that the pain and suffering is over and that we should feel better...so what is our problem?
I just try to use comparisons like a gastro or the flu and explain that it is kind of like having a flu for 6 months or a permanent state of gastro...they often don't get it but then again, until they have run a marathon in our guts, they won't...my hubby has suddenly developed a case of sympathy since he had a heart attach and now understands limits, meds and fear...only took him 15yrs...but that is the nature of the beast...
Just keep reminding them that this is the disease that keeps on giving and that 'over' is never 'over'...
Sharon

Sorry, no advice. My family abandoned me after the surgeries. I think they thought I would be 100% the day I walked out of the hospital.

My dad asked if it would be okay for him to take a vacation while I was still in the hospital. A year later, he sent me an email saying that he'd prefer to never talk to me again.

My mom refuses to talk to me about it.

My brother left after my first surgery and the last thing he said to me was that I need to grow up (this was before my first surgery).

My entire family accused me of causing UC by becoming vegetarian and that I need to eat meat to get healthy.

And none of my friends visited me in the hospital and only 1 friend of mine has remained since the surgeries.

So. . .yeah. . .maybe I should have posted this in the Rant board, but my family abandoned me after I was out of the hospital.

Presumably, they thought I was making a big deal about nothing. Now if I had a leg amputated instead of an internal organ, maybe it would have been different.

Wait Dog,
Somehow what goes around comes around and one day they too will understand what 'real pain' feels like...And maybe then they will develop some empathy...or maybe not...in the meantime, you have us and we are more than proud to have you as our family!
Sharon

Thanks skn69!

Mahshelley-
I hope you're treating your pouchitis with something that's effective. Pouchitis would creep up on me, but once I realized I had it antibiotics would take care of it right away. Even now, I'm on antibiotics all the time, but they work very well and I don't feel sick.

Overall I've been lucky, in that my family has thankfully been very supportive. Although, there are still certain people who do feel I'm "cured" now, and aren't very understanding of the day to day issues that might come up for me.

On the other hand, a very close friend distanced herself from me when I became ill with UC and was hospitalized for 5 weeks. We'd been best friends since childhood, went to university together, traveled together, etc. After I got sick, she visited and called at first but then made excuses. Later she told me that she found the hospital environment, my appearance (I'd lost 35 pounds from my 120 pound frame), etc, to be disturbing, and she said she just couldn't get her head around it. It upset her so I guess she preferred to stay away. I know that her inability to deal with the situation was her problem and not mine, but it still hurt to have a best friend abandon me at such a time in my life. We still do speak from time to time, but our relationship is not at all the same.

I've learned that many people have strange reactions to illness. Sometimes their own fears and anxieties get in the way. It's not always personal, but it sure feels that way.

This issue is one that comes up fairly consistently at CCFA support group meetings. There are two sides to it, one is people who don't feel they are taken seriously or supported well by family members and the other is people who feel guilty for seeking support.

I got great support by my family during the times I needed it, and also from my co-workers, one of whom drives me to my annual pouchoscopies even though it means getting up very early in the a.m.

There are no universal answers because we are all dealing with different people and personalities. It all boils down to the quality of the relationships and the communication skills of the people involved. The feedback I get from the people at the support groups is that changing up to different communication strategies sometimes works.

We shouldn't have to be understanding to other peoples inability to be in a hospital around sick people when it comes down to family and good friends that are supposed to be there for us in our time of need. I would put any of my fears or phobias aside if it comes down to being there for someone that I care about and love. Just because people can't see what's going on doesn't mean it isn't happening. I always had to convince people that I was sick when I had UC because people just thought I didn't want to go to work. I had to convince the ER drs I wasn't a junkie and I was actually in pain because they would try and push me out of the ER as quick as possible. Its still hard to even convince my wife right now after being 6 months post op that I could have bad days still. I don't people understand the severity of UC or all the risks we still have after the surgery as it may sound like a cure its more of a different way of life without a diseased colon. People also don't understand because they don't take the time to read and find out what its all about. My boss sat me down the one day after a good friend to his family died of Chrons and apologized for all the crap he gave me over the years because he didn't realize how serious it was. Before he moved down to Florida he was diagnosed with UC what a coincidence.

I'm sorry about your entire family being so mean Dog. It's not you it's their problems. My mother was similar, worse as she stuck around to pester me, after the surgeries. When I had UC she thought it was something that I'd done that had caused it, diet etc. as well. She was the "suck it up" type after the surgeries. I don't speak to her anymore.

The rest of my family have been wonderful at trying to understand but they don't always. My advice is that you need to remind them when they forget. I don't like to go around everyone always giving a health update, like a 15 minute weather forecast. That's depressing and makes it look like we are seeking attention or pity. Please ask them to understand that when you say you don't feel like doing something or going somewhere it isn't because you don't want to be in on the family event, it is because you don't feel well. If they think you are just making it up at the last minute, or imply it. The reason why you didn't announce to everyone how bad you felt is you don't want the attention focused on how you are feeling or your pain or whatever is wrong all the time like a weather forecast. Something like the above but I'm sure you will say it with better words!

It also takes time.

I'm glad you have your pouchitis under control Scott. I wish we all did - some of us have many health problems and some of us have one and just can't feel 100% all the time.

My family was super supportive, My gf even more so..sometimes she will look at me and ask me if im feeling okay, just out of the blue..now this support comes from my father's side of the family, my mother's side....well i heard from there for the first..idk few weeks and then it went back to the way it has always been where i am non existent...maybe they thought i was dying and wanted to get close to go and snatch and grab stuff from my home after i die like they did my great grandmother's idk..... Some people uplift and give me hope, then there are some who completely disgust me and need to hop on that one way ticket to mars i have seen popping up here and there.

Dog - thats horrible man, cant imagine having zero support through it all.

My family (Mother, Daughters, Sister) and friend were all super supportive.

My oldest daughter (who has always been somewhat self-absorbed for most of her life) AMAZED me in how she stepped up to the plate. Poor thing had to handle my divorce, attorneys, my move into a new home, construction contractors remodeling my new home, my employer, my LTD, my doctors, my rental business, my real estate documents, my homeowners insurance, health insurance, my finances, researching revoking my family trust, etc. ALL OF THIS ON TOP OF HER OWN LIFE.

Thank God she does not have UC, or she too would have a full-blown flare, just like I did! LOL

My Mom and my sister dropped everything and flew out to California from Louisiana to help make my home comfortable (in the event I ever got out of the hospital) as the home was dirty from the previous owners and all of my things were in boxes.

My sister stayed with me for a week and my Mom stayed with me for 3 weeks as I was still using a walker, needed home health and could not drive. My retired friend flew down from Oregon and stayed with me 2 weeks after they left, and by then I was driving and getting stronger every day.

My roommate/best friend (the home I was moving out of), kept my 2 dogs for 7-weeks while I was in the hospital and recovering at home until I was well enough to take care of them myself.

I am grateful everyday for the blessings they all were to me when I needed them the most.

When I got really sick and had my first big series of pre-pouch and k pouch surgeries my best friend dumped me. Big time.
She was off living her life, graduating from high school, going off to Europe for the summer, going off to univeristy...she was doing what any, normal teenager should have been doing at that age; I was the abnormal one, locked in the hospital being cut to pieces...but it hurt badly that she dumped me.
10 years and a lot of water under the bridge later we met up again and she fell into my arms begging forgiveness for her youth, egoism, naiviety etc...
I could have walked away, instead I burned the 10 years of abscence and took her back...and never looked back...I don't know what I would have done without her these past 25yrs...she has been my rock, my sister, family, life and whole support system.
Sometimes we just have to give the people we love a pass...sometimes they do stupid things for stupid reasons. Let the water flow under the bridge and try again later...you could get a plesant surprise.
Sharon

I'm lucky to have such a supportive family but in regards to having to deal with people that don't quite understand how we feel on the inside because it seldom shows on the outside, that was my problem with my employers pre surgeries... They always thought I was making things up about the pain and constantly accused me of ripping off the company because I was paid salary and would take days off when I was flaring real bad... I have yet to deal with pouchitis and I'm hoping I won't have too.

When I had my first and only horrid flare, my regular doc was out for surgery. In spite of the fact I had never been a high needs patient, the docs and nurses would not take me seriously. I finally, after at least 6 weeks of trying, got someone to schedule a scope. They did it and immediately hospitalized me. So,while my family was helpful and supportive, my substitute docs weren't.