frustration with people assuming I am well

I go thru the same stuff!!!! Going thru it with my fiancé and dad who assumed after I was going To be a ok not another problem. So irritating and as soon as I do have a problem my dad or him act like I'm dying. Now I did just be admitted but that's Bc I developed a fistula and they thought it was my surgeons fault does not get it can happen. Now I just graduated from college so I'm Job hunting hoping that works out soon Bc I need more money from these bills killing me. But I completely understand!

Lab and Danielle -

I celebrated one year from loosing the colon yesterday. Celebrate is certainly a crappy word! I hear you both on the way you feel about others thinking we are healthy again.

We have to come up with some good one liners for those that complain about minor things. My husband has a saying "you only know what you know". I hate it but at times he is right. My argument is I have had to go outside my box mentally and physically since 2007 dx of UC that people around me need to start going outside their box as well. Our cure just doesn't stop because of this great j pouch surgery. We are all still battling something at times!

Sorry for rambling but you can see that I am frustrated like the both of you! Here is hoping for better days!

Roberta

RLC you sre so correct. I swear when I hear ppl complain about a cold or something minor I'm like you have no idea! Really irritating when my brother thought he could deal with the pain I was like um no Bc you are a huge baby so you would have just complained. If I complained as much as my brother does or my dad when they have colds I told them they would want to punch me! Ugh. Frustrating

Wow lab you must be in my head. I so relate to all you have posted. I have zero patience for people who complain about their stuffy nose etc and would love to come back with. 'Want to trade places'. For somr of us, this surgery is nothing short of a miracle. For others, it is not a cure and we are faced with new issues and problems after having the surgery that others will never understand or have any appreciation for our suffering. It puts us in a separate category that I'd like to think of as a 'survival group'.

I've been living with UC since I was 15, so going on 42 years now. Yeah, it bugs me when people take their health for granted and complain bitterly about minor stuff. But, I guess I've lived with butt and poop issues so long, I try not to focus on it. Actually, when I have a stuffy nose, I feel like whining about it too. It keeps you from sleeping, your making terrible noises all day, mouth is dry from mouth-breathing, etc. The only good thing about it is that you know it will end!

Anyway, I like to remind myself that there are plenty of people out there with invisible diseases, and those people whose worst nightmare was three days of diarrhea eventually will have their own cross to bear. Hopefully, when it happens, they won't be whining all the time!

Jan

Unfortunately they are usually the exact same ones who whine the loudest whether they have a cold or cancer...NO One has ever been as sick as they have, No One knows their suffering! (usually when they find out that they have a varicose vien or a galbladder problem)...I sniff and giggle to myself most of the time...I only blow it when it is really flagrant like when my perfectly healthy friend tries to steal my handicapped parking sticker...Telling me how lucky I really am to have a sticker and can't I lend it to her! The last time I told her that I would trade it for her colon!
She wasn't happy.
Sharon

Totally with you on people not getting you are suffering. Until finding Flagyl a week ago, I've gone without much sleep for over a decade. Yeah, that impacts your disposition and ability to function emmensely!

I've suffered relatively silently for 13 years, probably with pouchitis all that time without even knowing what the condition was....thank you incompetent docs.

Until I found this forum, I had noone in my life validate or recognize I had a real, legitimate problem so I have trudged forward thinking I wasn't being strong, that I was inexcusably weak and lazy and had to keep up with the rest of the healthy population.

Now that I have a name to put to my misery....pouchitis....I feel like some people are taking me more seriously.

As for people who whine over a cold, I don't have a problem with it. I hate being sick! And I think peoples' threshold for discomfort is partially due to what they have been forced to endure. Last, this lifetime battle with a silent illness has taught me to be very sensitive to others in discomfort....or those who just look like they are having a cranky day. Just like what we deal with silently, you never know what's going on behind the scenes.

Sorry to ramble.

I have no patience for people's minor aches and pains either. I get so annoyed at work when people call in sick for a headache or cramps and I went to work for two weeks with diarrhea. Last week my husband had a bad case of diarrhea, cramps and bloating from going over board with candy that had sugar alcohol in it (after I told him to be careful with that stuff) and was complaining about it and how sore his butt was and I just laughed and said "welcome to my world honey".

The first year after my surgery, I cringed every time someone told me I looked great because I did not feel great. It was also annoying when they whined about little things. For some reason I got over that. Having the j-pouch has just become normal for me. I also realize that everyone has their cross to bear. If it's not personal health, it might be a jerk for a spouse, a kid that is mentally or physically ill or driving them nuts. Maybe whining about little things takes our minds off of the things that could send us over the edge if we were constantly thinking about them.

Kta- I have that problem as well and it was hard when I wanted to say well my bum is on fire and I can't sleep! But soon I accepted it. And I am happy I'm alive!!!

Lab,
I experience the same thing every day from a couple of my family members, my old race walking team and a bevy of neighbors who are all doctors and should know better. Somewhere along the way I decided that everyone has some kind of problem so I was probably being insensitive to people too without knowing it. I avoid the most obnoxious whiners and just try not to take the stupid comments personally.

I completed my first half marathon with butt burn, pouchitis and plantar fascitis. I ended up in the med tent afterwards. I had a level 7 pain and could not walk for about 30 minutes. Every member of my team including coaches and mentors were told I needed help to return to my hotel. Everyone passed the responsibility to someone else. They went out to celebrate at a bar and I was left to practically crawl back to my hotel. I have switched teams because I think their lack of responsibility and sensitivity was disgusting. The oldest member other than myself had just turned 30.

The sad thing was that it was a Crohn's and Colitis Foundation fund raising team. Of all the teams I could have been on I would have expected the most support and understanding from them. People can be amazingly obtuse.

I can also agree because I can relate to people being very insensitive when it comes to pain. But I understand that those who complain about a headache like its the end of the world don't understand the pain and crap we have to go through everyday and it doesn't get to me because even though I've had the 3 surgeries to get rid of my uc disease and I haven't slept well in months, I look at how far I went in the past 3 years, how much I've accomplished and been through. I just think about that because in order to go through it all there's no doubt you gotta be friggen tough and I like knowing that no matter what hits me I can get through it. I just shake off the softies that keep wining over a paper cut and I laugh and laugh and laugh LOL.

Living with a jpouch is certainly a "silent" medical issue, much like my sister in law who suffers from severely dibillitating rheumatoid arthritis. We look fine, for the most part, on the outside (with exception of the dark circles under our eyes from not sleeping), and nobody knows how it feels to deal with it. I was up about 8 times last night and am much too exhausted today to work, let alone chase my 3 year old when I'm done with my full work day. But what am I going to do? I'm going to do my work. I'm going to pick up my child from pre-school and play with him and make his dinner, clip his toenails and work on our potty training. I'm going to try to get to bed early because like you, my sleep is always interrupted. But I won't be able to, because there are things to be done - house to clean, laundry to do, bills to pay, after the workday is done and the kiddo is sleeping. It's what we do. We survive. And, when we can, we thrive. Some days we feel like we'll never thrive again, like our best days are behind us and we're stuck with a behind that will hate us the rest of our days.

However, no matter my discomfort or pain or exhaustion, at the end of the day, I will choose to have compassion on my co-worker who is at home sick with a cold, because, for today, she is miserable. I learned a lesson from my dear friend Jill, who died almost a year ago of cancer, how to be compassionate -- she fought for her very life while I was merely post-op miserable after any given jpouch surgery, and she was more compassionate toward me than I could have hoped. My pain and suffering, I am confident, never outweighed hers, but she took care of ME when I visited her. She had the most compassion for a person in discomfort or pain - whether it was a broken bone, a bad cold, or a blinding migraine. I want to be like that, and never judge another's pain by my own. It's not a competition. It's life, and life needs compassion to be well-lived.

Becky, I couldn't agree with you more. I think it is fine to vent and rage about the unfairness of it all, but in the end, pain and suffering is still pain and suffering, no matter how often you have to deal with it. In some ways I think we have a bit of an edge, because we know how to cope. I really feel bad for people who come unraveled because their week didn't go as planned. It is true what they say, that when the going gets tough, the tough get going. The powder puffs are paralyzed. I do feel better about things if I can focus on other things and people than myself.

Still, sometimes it just feels good to have a pity party (even though no one wants to join you). It is great to have a place like this where you can unload and people "get it."

Jan

Becky - I love that line, "It's life - and it needs compassion to be well lived."

Beautifully said Becky,
Right now, I am at the end of my rope for so many reasons but I still stopped to help a woman in a wheel chair to put her feet back on the rest (I was coming home from the hospital where my hubby is in ICU), she was blocked because her foot had fallen behind the rest and she couldn't move...I was having a bad day, she was having a bad life...everything is relative...she smiled at me and that was the first smile that I had had all day...
I do not know why God chose us for this but I do know that we have to be up to the challenge and prove ourselves worthy....(or something like that)
Sharon

Strange timing. I just got an email from a friend of my mother's (she was emailing me for birthday ideas for my mom's upcoming birthday this week), and she literally said to me, "oh, you're young! You don't have to worry about your body parts, just car parts! Ha ha."

Well needless to say, that did strike a nerve.

Spooky, I hear you. When I had UC in my teens nurses would say to me that I was too young or too pretty for all this. Really? Didn't know UC cared or was partial.

I've decided I have something that frustrates me even more....When I let people know I am struggling, generally bc I haven't been around or have dropped activities I was doing for years...mostly through church. Not one single person has followed up with me with so much as an email to ask how I am.

One woman was someone a stood by through a dificult divorce. She cried on my shoulder and I offered support in a variety of ways, where I could. I asked if she wanted to go for coffee one day, but she preferred a park walk. I dreaded walks until recently due to pouchitis leaks and butt burn. But I did it.

One day I poured out my heart to her in an email about my struggles becoming debilitating....bc I thought it was safe to do so with her. I don't make a habit of doing it. Actually, I never did it before. I never heard back from her, though I bring the kids to her home weekly for lessons. Twice, since telling her, I had to cancel bc I was in too much pain. She has never said a word.

I'm not looking for a pity party and I am not looking for anyone to step in and help. But it would just be nice if the people who "say" they care would at least drop an email with a few kind words.

I know I could do it more myself but, when my health is in less turmoil, I do try to check on people and offer help where I can.

This battle is a lonely one. It always has been. I've been left behind by people in all cirlces since HS as a result.

I made an attempt to forge relationships by getting involved in our church, even leading a new ministry, partly bc I was tired of the lonliness. I was in four ministries, some for years. When I had to drop them one by one, I never heard a word from anyone.

I know people are busy, don't realize, don't know what to say, don't want to interfer, etc....But I still don't get it. An email with a few words doesn't cost anything.

Being trapped at home by all this, email is my connection to people and a kind word goes a long way.

I'm throwing myself a pitty party today. I'm tired and nauseated. The last 3 nights of getting up 7+ times. I take full advantage of the better days because when the going gets tough it runs me ragged and then it takes a few days to recover. And no, no one understand, even my husband, who tries to be compassionate about all this for me. Every time family comes over, ... You are getting over all this aren't you, you have color in your face! Or... So glad all this is behind you now!... And the dreaded, you're too thin, you need to eat, put some weight on!!! I want to reply with sarcasm... I have color today because that's what makeup does.... And eating is so easy for you but not for me. And yes I got dressed today, but I'm tired, hurting, mad, etc.. but for you I put a smile on.

Now let me go take my diarrhea medicine, pain medicine, anti-depression meds etc...and put some under eye cover up on, get my 2 year old active son and 5 year old princess ready and go mingle with everyone. All this just so I can hear all the others complain how they are tired because they got to sleep late and the kids wouldn't cooperate this morning. But I don't blame them, this is what we would be doing if we were not plagued with all this and more. We just learn to not dwell and pick up the pieces and get on with life.

Hope everyone is having a good day!
Heidi

To add.

Spooky you posted a very good point as well. Every time I'm at the hospital/Dr office I hear, you're only 31, you're young and that benefits you. Or, you're too pretty to be going through all this! What in the world!!

My husband and I have been together since we were both 15. I was diagnosed with UC, pancolitis, shortly before my 16th birthday and spent a month of my summer vacation in the hospital. It wasn't until nearly 40 years later that he said, "I finally understand what you have been dealing with all these years." What brought on this epiphany? HE was diagnosed with UC! And his case is pretty mild, confined to the sigmoid colon.

Anybody who does not live this will ever truly appreciate how it impacts your life. I guess that is true for pretty much any disease. It is always a personal struggle.

Jan