I feel like I've been ripped of my life from my disease. Everything that I do revolves around my disease. I’m sorry, I need to vent, I need to get a few things off my chest, but only to complete strangers. To tell anyone that I know I would feel very exposed. I’ve hardly ever felt sorry for myself. I’ve had my disease for over 8 years now I’m 21, I’ve had one surgery at 17, I’m currently in a very hard predicament I have a very scarred rectum and lower bowel (meaning I will need surgery sooner or later) Last September I was the hospital I was very sick, my bowels twisted and I was in so much pain, I didn’t get surgery, my bowels seems to go back but worse then b4. Everything in my life up to this point I’ve been able to deal with (everything to a certain degree (by the way, not only do I have Crohns But I also have thalassemia minor, so I have very low iron, and I am terribly out of shape I mean I am skinny but I haven’t been able to run or do any real cardio activity just because it hurts my tummy to do to much.) Anyways I’ve been married for 3 months to man who is more then I could ever ask for, sweet kind wonderful, but I feel like this is the last straw. This is where I feel ripped off in my life; I’ve had to miss camping trips because there are no toilets. Missed ample amounts of school, I was a smart kid but because I was sick I couldn’t get the grades that I wanted or the grades I know I could of gotten. I can’t go to the beach or anything where there are no toilets. It’s not even the toilets, it’s the fact that I don’t feel well enough to even drive sometimes or even have enough energy to get out of bed. I feel everything in my life is a struggle. I try to keep strong by working full time thinking that my pathetic existence means something, but even that becomes a struggle now. But now the one thing that I can share with my husband our intimate moments I cant even have, I can’t even enjoy. That was the one thing that I most look forward to when we got married, I mean to express love in a way that… well you know what I mean. I can’t even enjoy that, as understanding and sweet as he is, to tell me its ok, and that’s not what really matters, but it matters to me. It’s not fair that everything in my life has to be a struggle, especially something like this. Maybe I’m blowing this out of proportion but I feel ripped off, I feel like I’ve done the best I can with my situation and I keep on getting ripped of simple, everyday pleasures! Not just sexual but everyday life. I’m not suicidal or even really depressed as much as it seems like it. I have wonderful family and friends, but I still feel ripped off, I’m sure everyone who comes to this site has their own story to share but I feel like if I don’t get this off my chest I wont be able to get over it. Now that you know my story I need to know with a condition as complicated as mine (not that mines the worst I’m sure there are people out there that have many worse issues, I am grateful to be alive and happy to be alive) is an intimate relationship with my husband possible? will it ever be if my disease and life continue this way? if you have an active disease does your body go into hibernation saying “you wont have a sex drive or any type of drive because you shouldn’t be having babies, you are not healthy enough to produce babies (not that I want a baby but, I was told that the body has sexual drive because its your built in drive to procreate)?. Or maybe its because of the lack of blood, I am totally up to any suggestions, any clarifications any thing that I wont be able to talk to a Doctor about I want real situations the real deal. I’d prefer women who maybe have a colostomy or an ilostomy to reply to this, or just any women who know what I am going through, or have been down this road, or partial down it. At 21 I feel like my life is at its last stretch, while others feel like its just beginning, I’m not trying to get sypompothy I just need answers.
The following user gives a hug of support to sikymcsikerson: the dutchess (01-28-2011)
i have crohn's and i been all threw that and nobody understands what we
have to go threw everyday its a miserable life.my colorectal surgeon described it as a living hell when your at your worse flair up.i am in remission
right now thanks to remicade.did you try all the drugs that are available,
i had to have three rectal operations due to this and it was very difficult
to overcome it form all my bowel issues.but i have to tell you that there
is always light at the end of the tunnel and it will get better,find the best
colorectal surgen or gi that will help you get it resolved .colostomy or
ilostomy might give you a good chance of recovery from this ,i know
that because some of my friends which we women had it done and there
fine now.it takes over your life and you cannot function and its something
that runs you down ,i hope you the best.by the way i know a women who had children with crohn's and were able to cope with it,it was hard but she is
fine now and happy.do not give up ,be strong and think it will get better.
thank you for replying and listening to my story, as long as it was. Yes I have tried remicade, it did nothing for me. I've also tried every other drug, still nothing seems to work. Right now I am on methotrexate I inject it once a week I guess its doing its job. Honestly I just can't imagine having an ilostomy, I just dont see how life can actually function after one, or working or any of that, I mean do you ever real feel normal craping out of a bag for the rest of yourlife. People say that they can, and I have done plenty of research on it, and I just still can't come to terms with it, I cannot except it, I can't see that that ilostomy will give me back a life that I haven't had in so long. I've talked to a very good surgeon, I have the best doctor in our city. And I've talked about all my questions and situations with them many times, but I always like to talk about it with people who have been through the same situation as me. Just a question for anyone else that reads this but in getting a disease did anyone feel that they were missinformed about certain areas of their disease, like internal scarring? Thank you for replying any advise givin is very appreciated
Last edited by sikymcsikerson; 08-15-2007 at 11:09 AM.
Reason: spelling
wearing a bag is not that bad i know a young married man rides his bicycle
everyday and is married with children and is doing great and no more problems with his crohn's ,methotrexate is working for you ,its possible you
might go in remission if you can tolerate it,all these are a last resort from
getting surgery and you have to look at the quality of life and not the idea
of wearing a bag,they are smaller and will hide well without someone noticing them.you can only suffer so far and its not worth doing it
all your life and you will reach a point were it will be your only alternative
and you have no choice if it continues constantly.
I am 31 and for 10 years i had endless problems. Just over 12 months ago i was in a terrible state........anorexic and in constant pain, which was unbearable. I was diagnosed as having crohn's. I tried medication and in the end surgery was my last option.
I had the surgery done, i was also warned that i may need a bag, but i didn't need one.
At the point in my life when i was seriously ill, my husband had to bath me and dress me. I couldn't take care of my children and i spent every day in bed.
My left kidney is no good, my liver enzymes keep going sky high and this is all down to the fact that the crohn's was left out of control for such a long time and i am constantly on "reserve" energy.
It will be 12 months soon from when i had my surgery, my symptoms are back, but I am coping with it. The reason why I am coping is because i made a vow to myself that i will never ever let the crohn's beat me again and make me as ill as it did last year. I was relatively close to dying.
Thats how i cope.
I am stilll on medication now and i still suffer from extreme tiredness, i work full time in a very stressful job and i have 3 children, but i carry on doing it each day as i know as soon as i stop i will have given in to the crohn's and im not prepared to do that.
Having a bag is not the end of everything, you will be surprised how soon you will get used to it and it will not be an issue for you. What would you rather have the pain or the bag???
Thats what i said to myself when i was told that i may need one, and eventually i will need one, but hey, who cares?? I don't, as long as i get relief from the crohn's then my life is back to normal.
I hope this helps. If you want to ask anything then feel free to fire away.
Ripped of life from Crohns 
Linear Mode
