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Im just a burden to my family

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Crohn's Disease
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Posted 5/28/2013 5:37 AM (GMT 0)
Im 20 years old i was diagnosed with crohns when i was 18 these last 2 years have been hell for me. These days i'm always stuck in the house not because i want to but because i don't have any energy to even leave the house because i'm always sick and in pain,, i already been admitted to the hospital 3 times this year each stay about two week long,,the problem is my diarrhea never stops to the point where i have no choice but to go in to the hospital because i can't absorb anything or keep anything down and also to much pain. I use to be 160 now im 110,, last year i was in the hospital for more then 140 days and this year might be worse,, None of the medicines are helping me i tried Azathioprine, Remicade which failed now im on Humira and i see no effect i had laproscopic surgery in november they removed my ileum which was the infected part they told me it was full with ulcers i was really hoping to go in to remission after the surgery but not even for one day did i feel any better.

Im just so tired of this disease and i have no will power to fight it any more im just sick of going to the doctors appointments, Hospitals, bathroom and everything ,,im at my all time low im fully depressed i cant stop thinking about the times when i was healthy always active going out,full of life, able to eat anything with out crying in pain or being stuck in the bathroom for hours. The worst part is me always been sick is worrying my family i feel like im a burden ruining their lives to, ruining my siblings lives because my parents are always in or out of the hospital with me they barely get any time from my parents and i feel so guilty, because of me being sick is effecting so much stuff in their daily lives,,im just useless.

Post Edited By Moderator (teddybearweiser) : 5/27/2013 11:45:25 PM (GMT-6)

Posted 5/28/2013 6:36 AM (GMT 0)
Hey bkzb0y1,
Sorry to hear you've been having such a rough time. You have every reason to feel down, and tired. It's not your fault at all.
Sometimes when you keep hammering away in one direction without success, a little course change can be useful. You've had surgery (and that is likely a cause for your diarrhea, bile salt malabsorption - look into Questran), and tried many of the best drugs available... seemingly without too much success.
It is sometimes a great relief to get acupuncture, or massage, or some other alternative treatment that feels good. And there is also liquid nutrition to take the strain off your digestive tract. Some also get relief from other diet modifications, though it can be a personal trial and error process.
Hang in there as remission is achievable in time, for most people. Your family will know that you are fighting for your survival so although it is tough, they will cope. Look after yourself.

good luck.
Posted 5/28/2013 9:39 AM (GMT 0)

bkzbOy1:

I have a Daughter your exactly your age with Crohn's. I know that things seem extremely bad right now. This disease can beat anyone down at times, and is truly hard on family members as well.

As hard as it might be right now, things will get better, somehow, someway. You must continue to fight to get the right treatment plan. SInce your case sounds severe, maybe you could consider contacting either the Mayo clinic in Rochester, or Cleveland clinic. They have extremely good reputations for dealing with severe Crohn's cases like yourself.

There are also many new drugs on the horizon that should becoming available in the next couple of years. Vedolizumaub is the most promising sounding of whats coming available.

I'm going to include a link to a Dr. that has a new treatment approach that some have claimed success with:

http://www.neurosciencemyths.com/Crohn's_Disease.htm

I don't have any direct experience with this, but it's something worth checking out when someone is in your position.

Most of all, don't give up hope. Your so young to think that your life has no value, and that your a burden That's simply not true, and as a parent, I'm sure your parents want the best life possible for you and are behind you 100%.

Hopefully with your parents help you'll seek out some additonal medical help as I suggested. We all hit rock bottom at some point in our lives. The good thing about that is that once your there, life has no choice than to start getting better.

Prayers coming your way.

Tom.

Posted 5/28/2013 5:22 PM (GMT 0)
Hey bkzb0y1, so sorry to hear you are feeling this way I can totally understand where you are coming from I went through a similar thing in 2011/2012 was constanly in pain , had no quality of life and I felt like the hospital was my second home! meds had stopped working or I was having reactions to them I thought i'd never be well again Also the guilt that I felt for putting my family through this was awful though it was through no fault of my own.

You may not see it now but there is light at the end of the tunnel and you will get there I know its hard but you need to try and stay positive, It sound like you have wonderful supportive parents who are more than happy to help you in anyway they can if they didn't they wouldn't be doing it so please don't feel guilty. when I spoke to my parents about my guilt they went mad and said they wouldn't have it any other way but to help me get through it all and your parents probably feel the same way.


As for you not absorbing anything. pain and weightloss has the hospital not thought about putting you on TPN for a while to give you the calories and fluids you need also it would give your bowel a rest too really hope you get sorted soon Bev x
Posted 5/29/2013 3:26 AM (GMT 0)
When do you see your GI again? I think it is time for prednisone and Imodium. I have had this disease for 32 years and they have been my savior meds especially before Remicade and Humira came about. Prednisone will reduce the inflammation which in turn will help with the pain and diarrhea. Imodium will help you to be able to keep some food in you by slowing down the D. You will have your life back once you and your doc find what meds work for you. As for your family, your parents love you and they would never view you as a burden. I hope none of your siblings get it to. Try and keep smiling, tomorrow is another day, but please get in to your GI asap.

Julia
Posted 5/29/2013 4:46 AM (GMT 0)
Hi. Sorry you are so ill right now. I hope they'll soon find meds that knock you into remission. In your shoes right now, if prednisone works, I'd take it to get some relief. Here are a couple of other treatment options for you to duscuss with your GI:

1). I believe another poster already mewntioned cholestipol to bind to bile salts and prevent diarrhea since removing the terminal ileum can cause you to not absorb bile salts and irritate the bowel.
2). Vedolizumab - I believe lots of places have clinical trials going, and I've heard good things about this med, including a good safety record. People who haven't responded to remicade/humira (anti-TNF) have also shown response to vedolizumab.
3). Prednisone / entocort depending on where the inflammation is in the bowel.
4). TPN - give your bowels a break and get nutrition through TPN
5). Enteral nutrition - I have thought about this when my husband has been ill, but haven't tried it. I thought jini patel's absorb plus maybe a decent route.
6). Probiotics - Greek yogurt or make your own at home. I make SCD yogurt for my husband, and he takes VSL3 as well.

Focus on getting better and don't give up hope. Hang in there and try to be proactive about your health and push your doctors for better quality of life. Family is there to not only share good times, but also to help you through the tough times. My husband also sometimes tells me he is sorry for bringing all these things to deal with to me. My answer is that he would be doing the same for me if I was the one who was sick.

Take it one day at a time, push your doctors for better quality of life, and make the best you can of each day. How you view your day and your life will help ease what your parents are going through with you. If you are down in the dumps, they'll be that much more worried about you. If you are finding happiness where you can, it'll help them too.

((Hugs)). I hope you'll be on the mend soon.

PV
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