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Ok so I was sitting next to a patient with cancer

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Posted 9/25/2010 7:36 AM (GMT 0)
What truely pained me to realize is that this cancer patient has more treatable disease and definately a better cure rate, and a much better quality of life then I do.  He asked the doc about how long would this effect his sex life and the doctor said six months max (and there were medications and interventions to help with the process, and all I have ever gotten was suck it up), and then he proceed to complain about that to me (yuck), until his wife got there.  Second, it was all I could do to remain calm and sympathic, when I am half his flipping age and have gone and am going thru way worse stuff.  

I miss feeling well enough to do things that make life meaningful.  I am in so much pain it hurts to breathe.  Do not worry if it gets any worse I am going to the ER, but right now I am just plain mad.

Posted 9/25/2010 8:08 AM (GMT 0)
It really is a joke. Yea POOR cancer patients. At least if you have cancer you either die or can get back to normal.

People with Crohns are stuck living WITH a freakin chronic, debilitating illness with extreme, prolonged bouts of intestinal pain, bloody Diarrhea, severe weight loss, loss of energy, and a multitude of other side effects FOR LIFE. PLUS PLUS PLUS, you can never talk about it with friends, or reveal yourself really to anyone cause the darn disease is so disgusting and embarrassing.

Conventional medication does JUST ENOUGH to keep us alive, but not enough to keep us consistently healthy. And some of the treatments that have the highest success rate involve slicing open your bowels and creating artificial stomas in your belly that you crap out of. Seriously does it get any worse? No seriously, does it? I'm sick of not complaining also, the crap that we go through, it's BS, we all have a right to complain about this disease, because it seriously sucks so hard, and makes incredibly difficult for anyone with it to get any JOY out of life. I'm not really religious at all, but if there is an afterlife, I better have a darn good one because of the crap I had to deal with when I was alive. I seriously wouldn't wish this disease on my worst enemy.

I'd rather have cancer, not even a question.

Post Edited (Poppysocks) : 9/25/2010 2:14:17 AM (GMT-6)

Posted 9/25/2010 8:14 AM (GMT 0)
I don't blame you for feeling annoyed, Navy. I feel the same way. I seem to remember that both our mothers commented that they (with terminal cancer) had a better quality of life than we did...

I wouldn't wish cancer on anybody, but it would be nice if we got a bit more support (especially from the medical establishment) in coping with our symptoms... and even more nice if we received as much symptomatic care as a lot of cancer patients. Try "sucking it up" for decades or your entire life... and then being made to feel like a lunatic or a failure because you are struggling emotionally with the pain and the restricted life. It's not easy.

*sigh*

Grrrrrring right with you, Navy.

I hope your pain improves soon and that you don't need to go to the ER.

Ivy.
Posted 9/25/2010 12:30 PM (GMT 0)
MMNAVY- I know what you mean. I have been told many times by docs, family, and friends that I just need to suck it up. With a rectal vaginal fistula and a failed seton placement--- the dr's ask if I am sexually active. I say,' would you be with these things in and the pain they cause?'
Posted 9/25/2010 1:17 PM (GMT 0)
Sorry you are going through this Navy . I know what you mean. There is a lot more research into cancer than crohns . I think the med field thinks , hey so they have diarrhea, big deal. This is one of those , if you haven't walked in my shoes , you have no idea things. Doctors seem to throw pills at us like they are in a Mardi Gras parade. Throw me something mr .....I'm tired of being tired, tired of the gut pain , the bone pain and joint pain . Tired of hearing ,you have arthritis and bone spurs in your neck and spine due to crohns , but there is not much we can do. You may want to see the friendly neurosurgeon but he will not be able to fix all of this, only maybe make things a little better. You should try to exercise more,,,WHAT??? how do you do that when you cant move ????
Posted 9/25/2010 1:55 PM (GMT 0)
reallyunderstand siting here in hosp mselfafter 4wks going mad never ends affraid cant we have radiation chemo could it help
Posted 9/25/2010 3:26 PM (GMT 0)
(((Navy))) I so agree with all of the above. Another thing that sucks for many of us, is that many of us also have to try and work with this freaking disease. I just finished my first full week back to work. I have come home everyday since I returned to work and literally slept a minimum of 2 hours after I get home. I lost 12 pounds (I know not alot, but alot if you are already thin) from this last surgery, and can't put it back on. I am considered in remission, but even being in remission still sucks. Its a literal crap shoot when you put some food in your mouth, whether its going to make you sick or not. And God forbid if you want to apply for disability, you have to jump thru hoops, and pray that you are lucky enough to be approved after fighting for years. This disease literally sucks BIG TIME!!!

Hope you get some relief from your pain Navy.
Posted 9/25/2010 3:34 PM (GMT 0)
so true.

I was meeting my GI two days ago and he was getting me to see a rheumatologist because he does not know what is up with my joints :S
He think that maybe I have fibro.
So I have IBD, Endo, Auto immune hep, anxiety and maybe fibro.

And you know what he tells me, Dont give up !!! Ok I am not on the way to give up but give me a break.
He thanks that I should not be on disability and just keep on with my life.
Sorry but I can not get through the week now how on earth am i supposed to be working, I have no idea.

I always thought I was blessed to not have cancer but I see your point.
And guess what the changes of me getting cancer are higher than normal :S

Vent smurf
Posted 9/25/2010 7:18 PM (GMT 0)
I'm glad to see I'm not the only one who gets so mad about this. I feel guilty to even vent or complain, it's like they want us to suck it up and be long-suffering (literally) and get on with our lives as functional people but most of the time we just can't. They say there is no benefit to getting anger because it's not fair but sometimes you have to get angry. I understand!
Posted 9/25/2010 7:24 PM (GMT 0)
I don't think it's really fair to criticise cancer patients... Cancer gets more funding because vastly more people get cancer than Crohn's, nothing more to it than that. If 1 in 3 people had a lifetime chance of getting Crohn's, it would become a national emergency, I reckon.

But I do agree that people do not understand what having Crohn's is like. And if karma exists then it has come to pay me a visit, as I was one of them. I used to get a bit puzzled over Crohn's sometimes - how it was considered a 'serious' disease when to my way of thinking at the time it just simply wasn't that bad. And if I had Crohn's for a few years and managed to get away with thinking that, what must it be like for the person who has never had Crohn's at all or known anybody close to them with Crohn's?

Now I know better. I do really know better.
Posted 9/25/2010 7:55 PM (GMT 0)
Mmmmmm!
Posted 9/25/2010 8:14 PM (GMT 0)
While I agree crohn's people should be treated with a lot more empathy then they often times get (especially from doctors), I'd never in a million years trade crohn's for cancer. The people I know who died of cancer (my great aunt beat it 3 times, and lost on the 4th) were a lot more miserable then I am. Two of those people had stem cell transplants which temporarily beat the cancer, but gave them a whole host of new problems (like inability to control their bowels). My grandpa died of lung cancer (from asbestos fibers), which was not exactly a cake walk. Another aunt has had cancer twice in 5 years (and worked the whole time she was getting chemo), so I'd say she has pretty good odds of getting it again. And Farrah Fawcett's anal cancer must have been horrific (butt problems are a terrible thing to have, as we crohnnies all know)

My dad has had pretty severe crohn's (he has those awful bone spurs that Sniper talked about) most of his life, and is missing the bulk of his large bowel, and even he says he's glad he's not his friend (who's fighting cancer).

I suffered from severe crohn's for many years, ugly fistulas and all, but have for the first time ever gotten close to remission (next colonoscopy will tell for sure). A couple years ago, I had pretty much given up on ever feeling decent, but it happened! There truly is hope of feeling better!
Posted 9/25/2010 8:43 PM (GMT 0)
It's also worth mentioning that not all Crohn's is equally bad. Some people do have it mildly or keep it under wraps most of the time with meds and/or diet. The people on this board probably aren't representative of the Crohn's population at large: people whose disease don't trouble them greatly aren't that likely to be looking for a support forum to post on.

I didn't mention this in my last post, but I had a cousin with Crohn's who died from a brain tumour. It was aggressive and took her out within weeks, not months. I would wager she would rather have had her Crohn's than the brain tumour every single time. Particularly as she was lucky enough to be able to lead a full and active life despite having Crohn's.

But severe Crohn's is a misery all the same. I can hardly cope with it at the level it is at now, and I know from HW that there is worse disease than mine: much worse.

:-/
Posted 9/26/2010 12:08 AM (GMT 0)
I totally understand where you are coming from Navy, this in between kind of life...I'm tired of the pain...I even take the heavy duty pain meds, and the pain can get so intense! Seriously, anyone know the Depeche Mode song Blasphemous Rumours? Kinda feeling that way right now...

Right now, I'm not feeling so hot either...
Oh, this is a Depeche Mode Video I found I YouTube, I think it was originally pulled from MTV due to content...so be warned...
www.youtube.com/watch?v=xT4Kw3A0pHI

Post Edited (Becoming undone) : 9/25/2010 6:16:57 PM (GMT-6)

Posted 9/26/2010 1:25 AM (GMT 0)
Folks,
I watched my Mom die of ovarian cancer and I am in no way disrespecting what it is to deal with cancer. Especially stages 3/4, but this guy was actually very much on his way to being cured.
Navy
Posted 9/26/2010 9:53 AM (GMT 0)
Navy ,I'm so sorry you are going through a very painful time with your crohn's right now, I hope and pray that you will find some relief soon, but I am also disturbed by your feelings toward this cancer patient and I will tell you why.
Two weeks ago my sister had just undergone a biopsy on her lungs and she has in fact cancer in her left lung and it has to be removed in the very near future and as bad as that is ,she just found out this last Wednesday that she has a lump in her left breast that is also cancer.She has not said what stages her cancer is but she also has a tumor the size of a tennis ball wrapped around the main artery to her lungs that cannot be removed surgical,so we are hoping and praying for a miracle.
Please do not think that I am unfeeling of your situation because I too have had an uphill battle with my crohn's 29 yrs of living with this disease,42 surgeries,numerous complications ,a permanent ileostomy , removal of 2/3th of my stomach because of a tumor caused by my crohn's(which even my Dr, was hoping it was cancer cause he said we can at least treat the cancer). Even with all I have been through I am still teriffied for my sister and I wish it would have been crohn's, it in my family , my daughter has had crohn's for the last 16 yrs ,my one other sister has UC for 13yrs and her daughter has celica so we are quite use to dealing with these diseases as relentless as they are, but cancer yes you either die or they can "cure" it but for my sister it does not look good.
I try and show compassion to any one who is ill,but yes some people do get whinny about less serious problems.I'm sorry if I sound harsh I don't mean to , it's just happening so fast and so suddenly and this post just upset me because of it.
I really do hope you start feeling better soon.

Sue[url]
Posted 9/26/2010 11:46 AM (GMT 0)
I totally understand what you were saying Navy and my wife has cancer. I wish there was a cure for it but I also wish there was a cure for crohns, or at least the doctors would treat us like we have the serious illness that we have. Like I said in my first answer, its like, " So you have diarrhea, big deal." When I was being diagnosed , I was still trying to work with all the symptoms and was soiling myself on the job. I actully had a doctor tell me to just bring a change of cloths to work. I was working outside and in peoples houses. I asked him if he knew what it was like to have to drive to a bathroom 8 or 9 times a day and to soil himself in someones house ? He said just ask to use the bathroom. Well we could not do that with the co. I worked for and in some of the houses where I was working , I would have been scared to catch something. He also had no idea how much pain I was in, its not just a gut thing. Anyway , the doctors and my co. treated me like crap and I was forced to retire or be fired . I was one of the lucky ones that had enough time to retire, not all us crohnies can do that. Hope you feel better soon and hang in there, I finally found a doc that knows what this is like and cares, hope you do to...
Posted 9/26/2010 3:11 PM (GMT 0)
I don't think people realise how CD affects every aspect of your life. I know cancer does too, and I know that none of us are wishing we had that instead, however there is almost no second of the day when my disease is not an issue. Here is how it works...

I wake up tired because my sleep is affected.
I step out of bed carefully because my joints are stiff and sore in the morning.
I get up an hour earlier than I should so that I can get through the morning digestive activity so that I can be able to get through my morning without having to rush to the bathroom.
I am hungry but don't eat breakfast for the same reason.
I think about whether I should eat lunch and what I should eat.
I consider whether I can do errands in the afternoon, and which ones can be left until later.
If I judge that I am not up to it I have to go home and rest.
I have to decide whether I have the energy to cook supper for my family, or whether I have to order in or make someone else cook. This makes me feel like a terrible wife and mother.
I have to steel myself to stay awake to read to my son at bedtime.
I have to give up on getting things done in the afternoon so that I can sleep and gather my energy to give my husband the attention he needs as much as possible when the kids are asleep. Guess how often that happens!! Very often I just fall asleep on his shoulder watching TV. Thank goodness he is the man that he is.

All of this is on a good day. If I am flaring then it is obviously much worse. And this is for the rest of my life. My family lives until their 90's - both sides - and I keep thinking that if nothing else gets me I will living like this for 40+ more years. It is a truly depressing thought.

I try and remain positive, like all of us on this site, but there are days when I want to curl up into a ball and stay there for a week. No one has real answers or solutions to our issues. No one can say to us that this is what caused it, this is how it will progress, this is what will happen etc. We live our lives wondering when the next flare will come, and whether this one will land us in hospital, or having surgery.

Anyway, all I can say is that we have to put this at the back of our minds as much as possible. Stress is a big factor for me and it is very stressful to let these thoughts get into my head too often. I just wish everyone here a relaxing Sunday and hope that you can all get through the day with this DD remaining far in the background. Take care.
Posted 9/26/2010 3:53 PM (GMT 0)

WriterMum said...
All of this is on a good day. If I am flaring then it is obviously much worse. And this is for the rest of my life. My family lives until their 90's - both sides - and I keep thinking that if nothing else gets me I will living like this for 40+ more years. It is a truly depressing thought.

That's what depresses me the most. I just don't want to be like this for the rest of my life. If I had UC I would get my colon taken out. But because I've got Crohn's, I can't get my colon taken out and even if I did, I wouldn't be symptom-free 'cos I've got Crohn's in the small bowel as well.

It's just depressing. And the scary thing is, I know it could be worse than this. And I do fear it getting worse, but I also hope it's not gonna be like this forever.

Incidentally, I thought it was just in the UK where IBD wasn't taken seriously; sad to say, it seems like US doctors don't always have great attitudes themselves. Shocking, really. I can't see the point of becoming a doctor if you don't have any empathy.
Posted 9/26/2010 5:27 PM (GMT 0)
You know life quality and pain is as individual as all of us.... While I agree with what Navy originally posted, for me
there's a BUT, and for me the BUT is that I'm now in a position where the risk of my getting caner has now increased
to 1 in 5 due to chronic pancreatitis. Now I know I wouldn't have CP if I never had crohns, BUT, for the first time
I'm really scared. The word cancer does that!! I wasn't scared before, I was in pain and I'm struggling, but I wasn't
scared. Maybe that's the biggest difference "fear"
Posted 9/26/2010 7:04 PM (GMT 0)
One thing that has scared me more than the word cancer is "transplant", and I worked with lung transplant as a clinical researcher! Sad thing, I know there is a "transplant" in my future (my liver)...don't know how long this liver is going to last (trying to take good care of it, but I am already symptomatic)

But with the PSC, I more than quintupled my risk for bowel cancers...ah well...doncha just love autoimmune disease?skull

But Navy, yes I do feel for you, I have often felt some of the same things...like I watch the documentary (Crazy Sexy Cancer) and seriously, she is able to be active, have a life, and take one pill to manage her disease(ONE pill, can you imagine?), yes she got sick with chemo, but was able to bounce back VERY quickly...I don't begrudge anyone their good health...it's just that I wish I had a bit of it! (and JMHO, I think others have felt this way too)...I wish there was a chance for a cure, not just an abatement of symptoms...
Posted 9/26/2010 8:31 PM (GMT 0)
Of course I mean no disrespect to cancer patients or any other patients.

My grandma died of lung cancer last winter and its not a fun way to go, and my friend had breast cancer so I know how bad it is.
But I just wished that us IBD people got more slack sometimes :(
I feel like people dont think we are sick enough.

Just like cancer, IBD is not the same in all people, but you know what I mean..
Posted 9/26/2010 11:13 PM (GMT 0)
You guys make me laugh. I've thought like this before. I know UC can be "curable" by removing the colon but I am not 100% sure it's UC and not Chrons, besides, losing a colon is a lifelong issue. You end up on the toilet way more often than normal people post-surgery. It's not fair. I am usually exhausted, no sex drive, I take these drugs ongoing, all the time with no chance of stopping, I feel like hell, I can barely function, my liver and kidneys are probably in awful shape from taking 20+pills a day. Nothing seems to even help significantly. Very frustrating. I have a friend who had hodgkins, she was very sick for a year but now she's great!!! I'd give up a year to cancer over this. In retrospect, some cancers you definitely don't want and would be much worse than IBD. I guess we have to keep that in perspective because just like not all IBD is the same, not all cancer is the same.

Post Edited (notsosicklygirl) : 9/26/2010 5:17:59 PM (GMT-6)

Posted 9/27/2010 9:51 AM (GMT 0)
I tried expressing this sentiment to my mom and she freaked out on me.
Posted 9/27/2010 10:26 AM (GMT 0)
This may sound strange, but this is why I'm not scared of the cancer "risks" of Remicade. If I get cancer, so be it. If anything, it could be great--if stem cell transplant works and my immune system could be rebooted, I could get rid of cancer and IBD. If treatment doesn't work and I die, so be it--at least I'm not suffering anymore.

I hate feeling like crap even when I'm remission. It's not fair that I've lost half of my hair. It's not fair that I'm tired all the time. It's not fair that I can't eat like a normal person. It's not fair that I have to get up 2 hours earlier than normal everyday just to go to the bathroom. It's not fair that I have to take 20 pills/day. It's not fair that I had to change my life around (i.e. give up my dream college and dream career) because of this disease. It's not fair that even though I changed my life, I still can't reach my full potential. It's not fair that I can't be like other people my age.

I can't imagine living like this for another 50-60 years; it is truly depressing. And I know if I get surgery (I have UC), I still won't be normal. As notsosicklygirl says, we still wouldn't be normal after surgery and we won't know for sure it wasn't Crohn's. I would go to the bathroom post-surgery the same number of times that I do during a flare, if not more. Also, what if we're the ones who are in that 5-10% of patients who have complications?

It makes me so angry that autoimmune diseases in general get so little funding. According to the book "Autoimmune Epidemic," one in 12 people will develop autoimmune disease but one in 20 will develop heart disease and one in 14 will develop cancer. The NIH budget for cancer research in 2003 was 10 times that of autoimmune diseases in general. mad

I guess I found a topic to talk about during therapy today, which I still have to go to three years after diagnosis...

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