Will Life Improve After My Recent Health Setbacks?

I was diagnosed with Crohn's disease 15 yrs ago.  I did go into a full remission for ten.  Then my world fell apart. I had unrelenting disease... numerous c-dff infections, resections, blood clots, steroids and all the side effects like high blood pressure, diabetesand now last thursday they removed my colon and some of my rectum and gave me an illeostomy.  I cant stop crying.  Is this normal?  

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I am so uncomfortable... have trouble getting comfortable to sleep.  Clothes don't fit, etc.  I feel so ugly and helpless.  Please help.  Any suggestions would be appreciated.



Jackie

Hiya Jackie,

You say you had your op on Thursday? And today is Monday! Its very early days yet.

Skyway is right, its just like a bereavement. You will come to terms with it just like you would do if you had lost a loved one. Yes life will never be the same again but its got to be better than being ill all the time.

I was a teenager when I had my op and already married.I had no choice as the UC wouldnt go away that time. I went on to lead a normal married life and had my children.

You will find an appliance that will suit you, send off for lots of samples. I dont wear tight fitting clothing anymore, its not a problem.

Dont expect to much to soon, given time it will all fall into place.You may never like it, I hate mine, but you will come to terms with it. I dont regret it as I had no choice and was young and in love.......then.

Poppy

i cant add much to these excellent replys. we have a female member here who has had an ileo for many yrs from uc. has she overcome it....

she is a runner and routinely competes as such. recently she entered and completed a 21 mile walk..... yes 21 miles . does she have my{and everyone else`s} respect.. you bet. she didnt give up or let her medical problems dictate how she would live. you can overcome it.  

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Hi Jackie, I see you have already got some great advice and words of comfort from our little team on here.....Well I can put my 2cents worth in as I have had Crohn's Disease all my life and now have an ileostomy..The disease wasnt found till it was almost too late and I woke up one day with my worse nightmare on my belly....This happened 4/4/04.And like you I couldnt stop crying....for a couple of mths.Was in hospital a long time(9 weeks all up)In all that time I tried so hard to not let my daughter see me cry.But when I got home....because I had lost so much weight and couldnt gain it for almost 12 mths after...(also my out-put was extremely high, which gave me soooo much trouble with keeping a wafer and bag on) I couldnt help but cry.I thought I was dying.I was deeply depressed, but had to get my act together for my girl,and myself.I made myself get back to the same mind-set that I was in before this happened...Witty,funny,sarcastic,direct, pull no punches kinda girl, but a big heart.I began seeing the funnier side of things, to make my friends laugh and get over their uncomfortableness(?) more so, but it just kept going...and now.....well I'm pretty much myself again.

   My heart goes out to you and as long as you have support of friends and family, support groups and places like here..you will be just fine......remember if you want to bitch and moan, come on here...we love it...we think its a challenge to cheer people up and put them on the straight and narrow about this new life.Good luck and remember, IT DOES GET BETTER.....cheers and take good care of yourself....Tara

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Hi Jackie

All your feelings of loss, body changes are very normal as everyone here has said.  If you have been on steroids and they are tapering them, this sometimes  exacerbates stress both physical and emotional for a few weeks.  After any long illness it take weeks to months  to recover.  Dont' be  hard on yourself for not making an immediate adjustment!  Your Crohn's has caused you complications for a long time....even with the offending colon gone, it is a rare person that feels well immediately.



There is a local radio talk show host here who said the other day that wallowing in depression doesn't accomplish anything but negatives, and life is a matter of attitude.  I partly agree with her, but feel the need when down and  have  occasional personal pity parties for trivial things; a cold that lingers over 10 days, work issues,  stupid stuff.  I find them very therapeutic!  

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  Can't even compare to what you are going through. As Poppy said, it is VERY soon since your operation....allow yourself the time to grieve and adjust.



Hopefully you will feel physically better each day.  Down the line, focusing on the things you CAN do or positive changes in your health may help; also having a goal/reward of some sort that is just for you  may help (day or weekend trip, new outfit, fancy dinner, etc.).  There are frustrations and adjustments along the way with a new pouch and stoma.....but hopefully much healthier life.



My best to you and these folks here are the best teachers and cheer section.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hi,  I just had ileostomy surgery on Sept. 20.  I have had Crohn's my entire life.  I am nearly three weeks out now, and I just wanted to write because I understand your words so well.  It seems as my physical pain has lessened, the reality of this thing being forever attached to me has really started sinking in, and I am not handling it as well as I would like, to say the least.  I cry in the shower when I see it.  I understand the feelings of loss, ugliness and helplessness.  I know in my head that this is normal, and am able to understand that things are going to feel so much better with time, but it is taking a little time for the feelings to catch up!  I ordered this thing called wear close, it is like a thong type contraption to hold everything in.  I feel a bit better with that on..I am trying to focus on those who have struggles worse than mine, and reach out to them.  Send someone a card you have been thinking about, or suprise them with flowers.  I know it sounds trite, but it really has helped any time I can take my mind off of me!!  I have always been proud of my physical body, even when it is not working right.  My profession is fitness.  I have tried hard to always appear the picture of health, no matter what was going on inside.  This is going to change me and my heart, and I will work hard to make sure it is in a positive way.  Forgive me for being crass, but this disease is a mother f#$%er!  It does not define who you are, however, and your life will be amazing in so many ways; I am confident of that because you had the courage to ask the questions you did, and reach out to the right people.  I am so new to this, so I was hesitant to try and offer advice.  I just wanted you to know that I understand, and would really like to keep hearing how things go for you.  Take care of you.

I've had a colostomy since June 3, '05 (rectal cancer).



We've all lost a very important part of ourselves that we were born with and took for granted.  Grief is normal for what we've lost.  We're amputees, but I would be willing to wear two bags rather than lose an arm, a leg or an eye.  I'm not trying to belittle your depression and pain.  My heart goes out to you and I hope I can be here like the others when you need to talk.  Things will get better as far as acceptance goes.  There are very few things I can't do and I hope you will soon realize that, too.

The very best of hope and luck to you.  Take care.  You're with people who know exactly what your situation is.

Hi JACKIE...so sorry to hear of your steps that led you to this place in your life. It's still really early after surgery, and it will take some time to physically and mentally get aligned with this. The physical toll this type of surgery takes on the body is relentless and seems one thing just leads to another. But, you will adjust, if for no other reason, because you just do. I don't think it ever becomes an okay event for anyone, but it does become something we can choose to live with. Mentally, yep, it's tough. I tried so hard not to have a pity party for myself, but, that's hard too. And OK. I was at the party a lot of times all by myself because I didn't invite anyone else. In looking back over my last two years, I think the thing that has helped me the most is all the people I know who would tell me, "you really shouldn't be doing all this traveling anymore with your problem" or "don't try to move that by yourself with your problem." I actually realized that the people who loved me enough without even really knowing "what my problem was" other than that I now had a piece of my insides hanging outside of myself, were becoming my problem. I guess it took people to have so much concern for me that they thought I was an invalid, to make me prove to them that I wasn't. And with that realization, I came to realize that only I could become the same person I used to be. Took me a while, as the energy didn't come back real fast, but now, I'm still an antique dealer, I still direct my spirituality classes (which are actually "self-help" classes), I still travel and do programs, and now I hear from those same people that they wish they could have the same confidence and abilities that I have even "with my problem". Don't get me wrong, I still have physical issues, I still get so frustrated with "stuff" with this thing, and sometimes, I wish I weren't in the 2% of people that survive what happened to me, but I am, so I just have to make the best of it.

Hang in there, keep in touch and hopefully you have a quick recovery.

Sandi

My colostomy will not likely ever get easier, it just gets less important.  There isn't anything that I can't do that I did before the surgery.  Even though I decided to get the procedure done, there was still an emotional reaction to the idea that life suddenly takes a radical swing in an uncharted direction.  



Sometimes its the idea of having to accept something different that makes a stoma difficult.  Its taken over a year to be happy in my own skin again.  My stoma does not define me, its just a part of me now.   It has its moments that irritate me, and sometimes its awkward, but so are 2 year old children.  





Even though my sleeping in is curtailed by a little stoma maintainence, its not much of a big deal.  I can go back to sleep once I'm done.  Its all about perspective.  I could have woken up to a mess and considerable pain.  It might not get easier right away, but it does get less important as routines start to fall in to place again.  



Hang in there, you'll get to the place you need to be.

Hi Jackie



Do hope you are coming to terms. I've a colostomy and now an ileostomy.



You are sooooo normal, it took me a while - but now I love my stoma - you know, it saved my life! I call it my rose and I am so grateful that we live in the 21st century, and I can look forward to lots of love, life, laughter and sunshine.



You'll get there chook - but please see your doctor if it all seems to hard to handle!

Hi Jackie.  Your post caught my attention because I have shared your same feelings.  It has been a year and a half almost since my first surgery.  As the others have shared with you, it takes time to heal............not only physically but also mentally and emotionally.  I have found that my experience has similarities to other losses in my life and there is a grieving process that I seem to be going through.  Next month I will start attending an ostomy support group in a nearby city.  I know that I still need the help and support of those that understand.  My hard headedness made me believe that I could do it all on my own, but not so.  We need understanding from others.  There has been a lot of words of wisdom and encouragement shared by those that have gone through the same as you and I and being able to talk to others that truly do understand is a big help in any healing process.  Jackie, I do pray that you get better with each new day.  Remember the positive words that are shared with you and seek out those that can keep you uplifted.  If you need too, just reread and reread the words of those that understand.

God bless you, Debi