Ive had crohns disease for 7 years now and for the past 2 or 3 years nothing seems to work. Ive been on numerous medications and steroids, been in and out of hospitald and even had a bowel resectioning, nothing anymore seems to work; i recently have been put on remicade and my white blood count levels have evened out but currently i have aaall they symptoms of severe active crohns, i hope for the best and keep trying, my daughter will be born in november and i pray for some sort of normality so i can be there to raise her, i want someday to be able to control my disease instead of it controlling me.
Anyone else feel hopeless?
- Thread starter Jyeager
- Start date
Help Support Crohn's Disease Forum:
- Joined
- May 16, 2011
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- 26
Dear Hopeless
Sweetie, we just got one of those diseases where hopeless is just one of those words that is a "catch phrase" with our disease. Everyone of us has had terrible experiences with this disease that pushes us to "hopless" feelings. You will find in this forum, even the worst person off will not tell you he is worse off than you, and for that I love this site. You will find a lot of encouragement here. I too am in my 40's, had two resecetions, failed at Remicade and just started my first dose of Humira on the 18th of August, 2011. Even though the Remicade failed, I still got some relief, more than I ever have since being diagnosed in 1996. It is a frustrating disease that makes life uncomfortable, and causes you to plan your day around "where is the nearest bathroom". I am in the military, although will be medically discharged here soon, and I find comfort in my disease by seeing some of my buddies come back with no arms or legs. I swear they cope with their disability much better than I handle my crohn's. They can get new hardwear to help them walk and get use of their limbs again. This disease tends to never go away, but CAN go into remission. That is the thing you have to hold on to. Get it in remission. It will be trial and error on your physicians part, because it is different for each person. It is possible, just try and be patient. I have two daughters who are remarkably understanding of the situation and are of great support. Yours too will do the same as she gets older. It won't take any time away from her, but probably build an even stronger bond between the two of you.
I hope my rambling helped even if just a little. I wish you all the luck, and please keep me posted as to how you are doing every now and then.
Sweetie, we just got one of those diseases where hopeless is just one of those words that is a "catch phrase" with our disease. Everyone of us has had terrible experiences with this disease that pushes us to "hopless" feelings. You will find in this forum, even the worst person off will not tell you he is worse off than you, and for that I love this site. You will find a lot of encouragement here. I too am in my 40's, had two resecetions, failed at Remicade and just started my first dose of Humira on the 18th of August, 2011. Even though the Remicade failed, I still got some relief, more than I ever have since being diagnosed in 1996. It is a frustrating disease that makes life uncomfortable, and causes you to plan your day around "where is the nearest bathroom". I am in the military, although will be medically discharged here soon, and I find comfort in my disease by seeing some of my buddies come back with no arms or legs. I swear they cope with their disability much better than I handle my crohn's. They can get new hardwear to help them walk and get use of their limbs again. This disease tends to never go away, but CAN go into remission. That is the thing you have to hold on to. Get it in remission. It will be trial and error on your physicians part, because it is different for each person. It is possible, just try and be patient. I have two daughters who are remarkably understanding of the situation and are of great support. Yours too will do the same as she gets older. It won't take any time away from her, but probably build an even stronger bond between the two of you.
I hope my rambling helped even if just a little. I wish you all the luck, and please keep me posted as to how you are doing every now and then.
- Joined
- Aug 14, 2011
- Messages
- 30
Jyeager, I totally feel your helplessness. I haven't been coming to this forum very long but I have found it immensely helpful and VERY supportive. I am very much in a funk now after finding out last week that due to a fistula my 2 1/2 yr journey of trying to have a baby might have to end. And no matter how loving and supportive my friends and family are, the don't quite get it the way the folks on here do. I just read other posts and say "ya, that is EXACTLY how I feel".
There are people who are much worse off and there are others who are much better off but I think we have all been in the one place or the other and because of that there will always be some who need cheering and some who can cheer.
This post has been a bit of both I think! I hope you feel better soon, remember venting does help!!!!
Tammi
There are people who are much worse off and there are others who are much better off but I think we have all been in the one place or the other and because of that there will always be some who need cheering and some who can cheer.
This post has been a bit of both I think! I hope you feel better soon, remember venting does help!!!!
Tammi
- Joined
- Jul 24, 2011
- Messages
- 427
HI Jyeager, i have had crohn's for now 21 years and was in remission for 15 wonderful years and just out of the blue it raised its head again and i am in flare up stage.i try to struggle through it the best way i can and yes there are times i feel helpless and lost because some people just don't understand the nature of this disease it can tear you apart if you let it. but, i have a great supportive family and my mom is the greatest and this forum which i call my home because the people at this forum are the greatest supportive social network you can't find anywhere else. These forum members have been through it all. and when i am down i post and the feed back i get helps alot and goes a long ways. I know some people will tell you well it could be worse, but, in your mind this is worse. and it can be a times. we usually go camping each summer across the island and so, far my flare up hasn't let me. so, i get depressed. but , get right back on the horse again once i have fallen and find the will to fight it again. When your daughter is born you will have something else to focus on which is good. and hopefully the new drug will work for you and you will go into remission.But like i said this forum is a great place for support and a great world of knowledge and a great place to be apart of, so make yourself feel at home and relax if you can and ask as many questions as you need the forum will respond. best wishes:rosette2:
scott
scott
- Joined
- Aug 14, 2011
- Messages
- 21
Have you tried SCD or GAPS?
These diets help, and, for a significant number of people, bring on some kind of remission for extended periods. They are very similar to the Paleo diet, and, interestingly, very similar diets have been developed independently in a number of countries. Dr. Seigneuret in France, for example. The idea is to eliminate all starches and most sugars. Not easy to do, but if you've had Crohns for a while you've had times when you could eat NO foods at all, I'm sure.
You start with chicken broth, homemade to be sure there's no added sugar or starch. Plus, it tastes great! It's easy to make in a crockpot. Just put in one whole chicken, sprinkle with salt, and about 4 or 5 cups water (depending on size of chicken, but it really doesn't matter). Simmer all day on Low. Strain the broth, salt to taste (lightly). Add coconut milk and/or ginger for healing and taste, if you like. Do whatever you want with the chicken, it's a soggy mess by now. Press all the juices out of the chicken when you strain it.
Drink as much of this as you want, all day. In sips if you're sick. Ginger helps if you have nausea. Nutmeg if you have diarrhea. Coconut oil or milk heals diearrhea, they say. The combination is really delicious.
Even if you don't try the whole SCD or GAPS diet, keep a supply of this broth on hand and have some every day. It freezes well, you can pour it into ice cube trays and then pop them into a ziplock bag after they freeze.
For breakfast or a sweet treat, a smoothie made with papaya, coconut milk, and a little nutmeg and ginger.
Hope this helps.
These diets help, and, for a significant number of people, bring on some kind of remission for extended periods. They are very similar to the Paleo diet, and, interestingly, very similar diets have been developed independently in a number of countries. Dr. Seigneuret in France, for example. The idea is to eliminate all starches and most sugars. Not easy to do, but if you've had Crohns for a while you've had times when you could eat NO foods at all, I'm sure.
You start with chicken broth, homemade to be sure there's no added sugar or starch. Plus, it tastes great! It's easy to make in a crockpot. Just put in one whole chicken, sprinkle with salt, and about 4 or 5 cups water (depending on size of chicken, but it really doesn't matter). Simmer all day on Low. Strain the broth, salt to taste (lightly). Add coconut milk and/or ginger for healing and taste, if you like. Do whatever you want with the chicken, it's a soggy mess by now. Press all the juices out of the chicken when you strain it.
Drink as much of this as you want, all day. In sips if you're sick. Ginger helps if you have nausea. Nutmeg if you have diarrhea. Coconut oil or milk heals diearrhea, they say. The combination is really delicious.
Even if you don't try the whole SCD or GAPS diet, keep a supply of this broth on hand and have some every day. It freezes well, you can pour it into ice cube trays and then pop them into a ziplock bag after they freeze.
For breakfast or a sweet treat, a smoothie made with papaya, coconut milk, and a little nutmeg and ginger.
Hope this helps.
- Joined
- Jun 14, 2011
- Messages
- 6,512
Hi Jyeager,
I'm sorry you're not feeling well, especially while being pregnant! As my son was only diagnosed in May, I don't lots of experience and don't have any 'medical' suggestions for you... just some support.
My son was treated with enteral nutrition therapy and, so far, has responded relatively well. I'm not sure if this can be done while pregnant but perhaps it worth asking about at your next GI apptmt.
A family member, who also has Crohn's, had difficulty getting her condition under control and it did take a couple of years and many trials and errors with medications, however, she finally did get it under control and things have been fine for her for the last 10+ years. Unfortunately, she lives in Portugal and there is a language barrier, so I really don't know what medication she is on.
But, my point is only that things can and will turn around! Just try to take it day by day... and, hopefully, SOON, each day will be a bit better.
Best wishes!
I'm sorry you're not feeling well, especially while being pregnant! As my son was only diagnosed in May, I don't lots of experience and don't have any 'medical' suggestions for you... just some support.
My son was treated with enteral nutrition therapy and, so far, has responded relatively well. I'm not sure if this can be done while pregnant but perhaps it worth asking about at your next GI apptmt.
A family member, who also has Crohn's, had difficulty getting her condition under control and it did take a couple of years and many trials and errors with medications, however, she finally did get it under control and things have been fine for her for the last 10+ years. Unfortunately, she lives in Portugal and there is a language barrier, so I really don't know what medication she is on.
But, my point is only that things can and will turn around! Just try to take it day by day... and, hopefully, SOON, each day will be a bit better.
Best wishes!
HI,I fully understand where you're coming from some days are better than others but don't get too low, read all the posts you can you'll see that we're all going through very much the same thing, you'll get through it even if you don't believe it at the moment, read other people's experiences especially those who have been lucky enough to be in remission take it day by day and try doing something you really enjoy- symptoms permitting of course, but if that fails keep checking back on the forum for excellent support and understanding wishing you all the best stay positive
