Dealing With Stubborn Family Members....

[ECU_Drummer]

I'm scheduled to have my large bowel removed and an ilestomy installed a week from today (3/5). I've been suffering from Crohn's for the last 6 years and have tried all medicines without success. It's something that my wife and I definitely don't want to go through but we also understand that there aren't really any other reasonable options. She's a registered nurse and understands that whatever we have been trying hasn't been working and that we're basically just wasting time right now.

My parents are taking it hard, but they understand that we are trying to get me better for the long term. They focus more on the short term side of things with the "what if" questions (what if your intimacy with your wife suffers, what if the bag comes undone, etc), but that's understandable especially since I'm their first born (I'm 25 btw). My aunt, on the other hand, will not stop hounding me about this clinical trial her gastro doctor told her about. She keeps telling me that I have nothing to lose, that this surgery is permanent (obviously, considering my large bowel will be removed), that I'm too young for this surgery, etc. My wife and I researched the study and it's a double-blind study where I may receive the trial drug or I may receive a placebo. The trial lasts 12 months, which scares the crap out of me because if it doesn't work I'll be stuck on the same prescription regimen. The most frustrating thing though is how I've mentally prepared myself for this surgery. It's scary but I'm sick and tired of being sick and tired.

What are some of the ways you guys have had to deal with family members like this? I know she is just trying to look out for the best and that she's worried, but I'm a married man and this is something my wife and I have decided to do, it's time for her to accept that and not overstep her boundaries.

 

[valleysangel92]

Hiya

I'm sorry your dealing with this, we deal with enough without putting up with this sort of thing.

I think it is understandable that you parents are worried, I know it hit my parents hard when I had surgery last year (I didn't have a stoma though). I'm their youngest and I think they feel guilty for how sick I've been. I think the difference is that I was only just 20 when I had my surgery and had been sick with different things all my teenage and adult life, so we were all very glad of this chance to get me better. Also, my parents didn't tell me their worries or project them on to me, so I could just deal with getting my own head straight. Are your parents aware how bad untreated crohns can be? I think it also helped in a way that I have a step cousin with very severe crohns who ended up critically ill and is now fighting her 4 th open surgery. So my family have seen just how bad it can get, and were keen that all steps possible were taken to stop that happening to me.

As for your aunty, your right she needs to take a step back and understand that this is your choice , the prospect of going no where for a year isn't something that sounds overly appealing, and with crohns isn't something that you can do on a whim, so you have to do what you and your doctors feel is best for you and not what a doctor who hasn't met you thinks. I hope she will come around soon and realise that you are doing what you think is the best option for you.

 

[ECU_Drummer]

My parents definitely understand how rough Crohn's can be untreated. My mom has Ulcerative Colitis but has been in remission for several years. She's also a breast cancer survivor who has gone through a double masectomy and a historectomy. Her major worry is that once my colon is gone, I can't get it back. I don't think that'll be such a bad thing considering how diseased my large bowel is. My parents, while fearful, have been very understanding of how this is a decision my wife and I needed to make on our own.

 

[valleysangel92]

I understand that worry, but yes it is better than leaving a very diseased colon there to fester. Please let us know how things are going for you.

 

[littlemama1]

I had similar reactions from my family, although my story was a bit different because I was 18 at my first surgery. I think it helps to get them to look at the bigger picture- sure, you'll worry if it leaks, and you know it? At some point it will, I guarantee it. But the bigger "what-ifs" are the long term ones... what if you don't do this and spend the next 5 years continuing to struggle? what if it keeps you from achieving your career dreams? what if it keeps you from being the dad you want to be? I also get the mentality people have of "don't give up yet, a cure could be right around the corner!". People were saying that to me 11 years ago, and I'm really glad I didn't listen because there's still no cure, and I'm so glad I didn't waste my 20s being sick. I was DONE and just wanted to start to move on. Everyone reaches that point at a different pace, and there are some people who feel the need to try more clinical trials, different drugs, get more opinions, and that's OK. You will know when you're done. If the prospect of one more clinical trial sounds excruciating, then don't feel obligated to do it. You don't have to feel guilty for not trying every experimental drug on the market.

The big turning point for me (and my parents) was when I went to my first UOAA conference that included a sub-conference for young adults with ostomies about a year after I had the surgery. I met about 50 young people with ostomies and it truly changed my life. I went the next few years and was also a counselor at Youth Rally, the camp for kids 11-17 with ostomies, which was amazing. There is really nothing better to show you that life with an ostomy is OK than to meet so many other people in the same situation that are normal, happy, fun people who are continuing to life their lives and follow their dreams. There used to be a great website for the young adults' group, but as the people who ran it grew up and got busier, it's now defunct. But there are a few other websites that feture people living successfully with ostomies, and maybe if your parents are exposed to them, it would help.

The Phoenix Magazine is the official publication of the UOAA and they have a sample issue online here: http://www.phoenixuoaa.org/


The guy than runs this website has Crohn's and an ostomy and climbed Mount Everest: http://weneedideas.ca/
There's a photo link on there to a very attractive young woman's blog who allowed herself to be photographed with her ostomy showing to raise awareness.

And if you want the motherlode of pictures of young people living with ostomies, http://www.rally4youth.org/about.php
is the Youth Rally website and has a few thousand photos of the last several years of camps. When I was there, almost every single counselor and organizer had an ostomy or j-pouch, with the nurses and a few parents of ostomates being the only exceptions. SOmeone also made a nice Youtube video about the experience a few years ago which is here: http://www.youtube.com/watch?v=2XYgBe-ZI9w

I hope that helps. I'm really sorry they're not more supportive.

 

[SarahBear]

What a frustrating situation.

All I can say is, do what you think is best. Clinical trials can be great, but it has to be something you're completely comfortable getting involved with. If you feel more comfortable with the surgery, then that just sounds like a better option for you.

It's wonderful that your wife is supportive of you and helping you make this decision! That's a big plus, especially when the support you're receiving from other directions isn't quite as… helpful.

I'm sure your family will come around. It sounds as if everyone is trying to keep your best interests at heart, although their priorities are slightly different from yours. Have you tried to sit everyone down and have an open discussion about why you've made this decision, and that you're not changing your mind? It might at least show your aunt that hounding you about the trial is pointless.

Does your aunt have IBD, as well?

 

[Justin1982]

I'm scheduled to have my large bowel removed and an ilestomy installed a week from today (3/5). I've been suffering from Crohn's for the last 6 years and have tried all medicines without success. It's something that my wife and I definitely don't want to go through but we also understand that there aren't really any other reasonable options. She's a registered nurse and understands that whatever we have been trying hasn't been working and that we're basically just wasting time right now.

My parents are taking it hard, but they understand that we are trying to get me better for the long term. They focus more on the short term side of things with the "what if" questions (what if your intimacy with your wife suffers, what if the bag comes undone, etc), but that's understandable especially since I'm their first born (I'm 25 btw). My aunt, on the other hand, will not stop hounding me about this clinical trial her gastro doctor told her about. She keeps telling me that I have nothing to lose, that this surgery is permanent (obviously, considering my large bowel will be removed), that I'm too young for this surgery, etc. My wife and I researched the study and it's a double-blind study where I may receive the trial drug or I may receive a placebo. The trial lasts 12 months, which scares the crap out of me because if it doesn't work I'll be stuck on the same prescription regimen. The most frustrating thing though is how I've mentally prepared myself for this surgery. It's scary but I'm sick and tired of being sick and tired.

What are some of the ways you guys have had to deal with family members like this? I know she is just trying to look out for the best and that she's worried, but I'm a married man and this is something my wife and I have decided to do, it's time for her to accept that and not overstep her boundaries.

I think your parents are being "critical" out of genuine concern. There's no turning back from here.

A few questions for you.

1) Have you seen specialists or just a few doctors? It took me 20 years to find doctors willing to pull their heads out of their ass. Now, I've got a good team trying to get me well.

Mayo Clinic, Cleveland Clinic, might be a few hospitals to visit. I've found the hometown GI doctor no longer cut it. Seems most are out of their element.

2) Assuming you've seen specialists, they all agree, and no options exist. Have you thought of laying out in detail why this option remains the best choice?

Sit down with your folks and have an "adult heart to heart".

Ultimately, the medical decision remains yours. No one here wants to see unnecessary harm or rush judgments impact a person's life forever.

 

[ECU_Drummer]

Thanks for your reply. I feel very comfortable with the team of specialists I see. Both my Gastroenterologist and surgeon are at the top of their fields and at this time I wouldn't feel comfortable with any others. Cleveland and Mayo are not viable options for me since my wife and it wouldn't be able to afford relocation (we also just purchased a house in June).

My parents haven't been that bad to deal with. Of course they're worried but they also know that I'm a grown adult and that this is a decision that my wife and I need to make. My aunt is really the only one being unreasonable but this isn't the first time she's acted this way. She's very much of an "Ill do anything to get my way" type of person.

 

[Justin1982]

Thanks for your reply. I feel very comfortable with the team of specialists I see. Both my Gastroenterologist and surgeon are at the top of their fields and at this time I wouldn't feel comfortable with any others. Cleveland and Mayo are not viable options for me since my wife and it wouldn't be able to afford relocation (we also just purchased a house in June).

My parents haven't been that bad to deal with. Of course they're worried but they also know that I'm a grown adult and that this is a decision that my wife and I need to make. My aunt is really the only one being unreasonable but this isn't the first time she's acted this way. She's very much of an "Ill do anything to get my way" type of person.

Understood and best of luck. I think everyone here wants to regain a quality of life. It's too bad you are so far from Cleveland or Mayo, even if for another opinion. I have come to find that several are often required in life.

None the less, everything rests upon your comfort level.

1) Happy with treating Physicians - Yes / no
2) Doctors are in agreement over treatment Plan - Yes / no
3) Sick of Being Sick - Yes / no
4) Recognize the Risk, Rewards, and Complications - Yes / no

Pretty much, if you're at wits end, then only you can make the decision on how to "Live Life". The Meddling Aunt can remain concerned, but isn't the one being ill on a daily basis.

 

[Ihurt]

Hey there,

Just wanted to say, I think you are doing the right thing by making this decision with your wife and family. It seems like most of your family is supportive with you having this surgery. Your aunt is probably just meaning well, just worried about you. It is true, you cannot un-do this type of surgery. There are risks involved, but of course there are risks with Any surgery.

That being said, if you feel you have tried everything you can and you have seen no help or results, then surgery probably is the next best step. I mean maybe you will then get some of your life back. I have been chronically ill for over 10 years now with many health issues. I know that it can get quite annoying when people try and tell you what you should and should not do, seeing as your the one in the pain! I think if you and your wife have discussed this at length and feel it is the best way to go, then you go for it. Just kindly tell your aunt that you have already went over all the pro's and con's and feel this is the best way to go for you. Thank her for her concern, but tell her you have made up your mind..

Good luck and hope all goes well and you can finally get your life back...

 

[UnXmas]

I'm a similar age to you and have had a permanent ileostomy since last Autumn (I'd already had my colon removed some years earlier). I love my ileostomy and would never go back to how it was for me before, so I find it so frustrating when people view my stoma as something I should be pitied for. I wish I'd received more pity for the horrendous bowel problems I used to have but which ended the day I got my ileostomy!

I'm lucky that my close family have a positive attitude about it. I've had some more distant relatives make it sound like having a stoma is such a terrible thing, and the most difficult for me is that my GP, who I've been seeing for years and years, is very against the stoma. For some reason people who fear stomas seem to think it's worse for young people - my young age gets brought up a lot. I don't get that at all - a stoma does not stop you doing anything, it's not placing any great restrictions on your future. I can only imagine some people feel stomas make people unattractive and that this is more of a concern for the young - as if other bowel problems don't do the same!

I don't think a stoma should always been seen as a last resort even. My surgeon and I held off for years trying everything else he could think of, and now I wish I'd had it done ages ago!

I really don't know how to handle people who object, other than making sure they do not influence your decision. I knew absolutely that a stoma was what I wanted, and if you feel the same (well, you'll probably have doubts at some point, but if you generally know it's right for you) you can only hope that by living happily after the surgery your family may be able to see the difference it has made for you. If my parents had been against my getting an ileostomy, I think they would have changed their minds by now as they're seeing how I'm spending much much less time in the bathroom, no longer having to plan around visits to the bathroom, no longer coming out of the bathroom crying in pain. They see how happy I am about my stoma.

I would also suggest not denying or downplaying any of the risks or the trial of going through surgery. Showing you understand the risks and are prepared for the potential difficulties is probably a better way of reassuring concerned family, especially if any of those difficulties do occur - your relatives are probably discouraging the surgery because they are frightened of what it may do to you, so when your bag leaks, or you're in pain after surgery, or something similar, if they have known in advance this is what it could be like, it won't be so frightening if it occurs. It's possible you won't be happy with your stoma, and if that should happen, don't be tempted to deny you feel that way because you're worried about people saying "I told you so" - finding solutions to stoma-related problems and learning to live with a stoma can take a while.

 

[UnXmas]

My parents definitely understand how rough Crohn's can be untreated. My mom has Ulcerative Colitis but has been in remission for several years. She's also a breast cancer survivor who has gone through a double masectomy and a historectomy. Her major worry is that once my colon is gone, I can't get it back. I don't think that'll be such a bad thing considering how diseased my large bowel is. My parents, while fearful, have been very understanding of how this is a decision my wife and I needed to make on our own.

Regarding the permanent removal of the large bowel: my surgeon told me a whole list of conditions which, by having it removed, I was avoiding. Top of his list was bowel cancer. I have a strong family history of colon cancer, now I know I'll never get it. He also mentioned appendicitis (I had my appendix removed - I'm not sure if that always happens) and diverticulitis as other potential risks which the removal of the colon overcomes. Plus with Crohn's you of course reduce the risk of future complications from the disease when the colon is gone.

The colon, from what I've learned, absorbs salt and liquid, and that's about it. I hope someone will correct me if I'm wrong, but I think it's perfectly possible to live entirely healthily without it, it performs no vital function. With an ileostomy you are vulnerable to certain nutrient deficiencies, though these can be regularly tested for and treated with supplements, and there are of course possible complications which could occur either from the surgery itself or from the stoma, but if your doctor has reasoned that these risks are outweighed by the potential benefits, I'm not sure why lacking a colon is a bad thing in itself.

 

[Ihurt]

I totally agree Unxmas. I HATE how some people and doctors make it seem like having a stoma is such a horrible thing. I know this is not the same, but I have a bladder disease( IC) where I have been contemplating getting my bladder removed. This is a very risky surgery as it also involves resecting the small bowel to use as a conduit for the urine to leave the body. But I also mentioned I was thinking about it to my regular Primary care doctor and she acted so appalled. I even brought it up to my gyne, and same thing, she was like " oh NO, you do not want to live with a bag!" I found this to be so hurtful and non-sensitive. I mean, they have no clue what it is like to live with that awful pain.

So, I agree with unxams 100%. You have to go with your gut feeling. I mean you know your body better than anyone else. I agree, as long as your aware of the risks with the surgery, but also you know the benefits as well. I mean maybe you will get your life back after this. Who gives a flying **** what anyone else thinks. This is your life, your body, and ultimately, your decision. It sounds like this is what you want so like I said, just kindly tell the people who are trying to change your mind that your mind is made up. Tell them you appreciate their concern, but this is the best choice for you. Good luck and always go with your gut, ( no pun intended) and with how you feel....

 

[UnXmas]

I'm sorry to hear how your doctors reacted, Ihurt. I had a couple of doctors react that way to my getting an ileostmy - one gastro doctor I saw, before I'd had it done, basically lectured me on how reckless my surgeon's proposal was. The gastro, whom I had never met before, had read about the suggestion for an ileostomy in my notes and it was pretty much the first thing he brought up (before I had a chance to bring it up), and told me how an ileostomy goes against nature. Yes, he actually objected to it because it is "unnatural" - as if medicine is natural, and as if anything natural is good!

But it showed me that two doctors, both highly qualified, can have such opposing views on this. When your doctors object to your suggestion of bladder removal, it doesn't mean they know what is right for you. I think a lot of that view comes from an inherent prejudice against stomas, as we've been discussing in this thread, but also perhaps because doctors who are critical of a patient getting an ileostomy may well have not understood how low the patient's quality of life has gotten. My surgeon really understood what my life was like. If your doctors are critical of you, they may just not have understood the pain you're in.

In some instances a stoma is a potential treatment intended to make a patient's life considerably better, not a last resort that condemns the patient to a life that some consider horrific just because they'll have a stoma.

 

[Ihurt]

Thanks Unxmas,

I agree with you 100%! To say that getting a stoma is unnatural is the most ignorant thing a doctor can say to a patient who is very sick and in need of help. I mean Don't doctors realize just how bad a person must feel and how sick they really are to even be considering an ileostomy or any kind of major surgery?? It is just so maddening. But your one doctor saying it is unnatural is just so wrong. So what does he tell people that have cancer, that the treatment and medications are unnatural and they should not take them?? Sorry you had to deal with a doctor like that too, how terrible. Well, at least you have a good GI who recommended your surgery who was actually thinking of you and your quality of life. I am glad your surgery has helped you get some of your life back. That is what really counts!!