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My story...

Hello.

I was diagnosed with Crohn's disease in March of 2010. I have had stomach problems all my life. When I was in high school, I had my galbladder removed. I often had diarhea and was always sick. I always assumed my stomach issues were from that. When I was first diagnosed, I knew little about Crohn's disease like most people. I was ok until I really researched the disease. My doctors warned me that smoking ciggarettes and drinking did not help the disease as well. In February of 2011 I took a new job that was very high stress and I often had to work 16 hour days. Around that time my doctor warned me that if I didnt quit smoking soon, I would have to have surgery in the near future. For about the next year after I became sicker and sicker. I was exhausted, I was getting bronchitis and other illnesses left and right, and I was very depressed. It came to a point where literally everything I ate made me sick. I was going to the ER several times in a month. Everytime it was the same story. They would give me IV pain medication and do a CAT scan or Xray. Most of the time I had impaction showing up on these tests. I was constantly in pain and was frusterated. I was given all the pills one takes with Crohn's: Pentasa, Lialda(?), and Prednisone. The prednisone made me even sicker after I took it, so I stopped it.
I was lucky that I wasn't fired from my job because I missed a lot of work. Then, around March of 2012, my doctor prescribed Humira. He told me to give it a month and if it didn't work then I would be having surgery. I was shocked because I didn't realize that the "near future" would come so quickly. I took the Humira and it didn't do anything for me. The doctor did another colonoscopy, but he couldnt even fit the scope through my illeum because it was so inflamed. My surgery was then scheduled for June 18. I was so scared. So many things came to my mind: would I end up with a bag attached to my side? Would I die? Was this only a beggining of a lifelong series of surgeries? People at my job are very unkind people. They didn't understand why I always went home for "just a stomach ache". Someone even told me people were gossiping and saying I should have been fired for missing so much work during my probationary period (which was a whole year!).
I had my surgery, and it was scary and quite an ordeal. I was at the Cleveland Clinic for a whole week. They removed six inches of my small intestine and the lower portion of my large intestine. I didn't end up having a bag of any kind because the surgery site did not leak. I ended up having to have an NG tube shoved down my nose to my stomach because bile was building up in my stomach. I ended up going home and having 8 weeks off work. My surgeon told me "with Crohns nothing is a guarantee, but if you quit smoking and watch your diet, you may be ok for ten years!" So I quit smoking. I ended up in the ER 3 times within the four weeks after my surgery. On the last time, they did some tests and discovered that the Crohn's inflamation was back ALREADY. I was so depressed. I started smoking again after eight weeks.
Then, I had to go back to work. I was on light duty for a month. When I went back to regular duty, I was having to work at least two days a week for 16 hours manditory. I just couldn't do it. I was sick again and exhausted. They put me on Remicade, which doesn't work. I am having such a rough time with all of this. I have been trying to find other employment so I can work less demanding hours and I have gotten on medication for my depression. I am just so frusterated. I am still trying to deal with the fact that this disease is never going to go away.

Sorry my post was so long. Any advice would be greatly appreciated.
 
Wow, this is rough. The only real advice I can give you is that food has amazing healing powers if you know what to eat.

I think diet is the first step. Here's a few starting points for revamping what you eat to allow healing.

- http://www.youtube.com/watch?v=KLjgBLwH3Wc&sns=em
This video is about Multiple sclerosis, but these diet principles are powerful and apply to all immune disorders in my opinion.

-Juicing. http://www.crohnsforum.com/showthread.php?t=41838

Welcome to the Forums, as well! We're all here for you and want to see you get through this and back to as much of a normal life as possible!
 
Thank you so much Stephen. Diet was the part that I had (and still have) the most trouble with coming to terms with. Thank you for posting the video as well, I am going to watch it right now!
 
First off Orchid81 welcome to the family. You never have to worry about a long post, if you look around you will see many of them on here.

I am so sorry that you are going through so much and in such a short amount of time. I hope that you will find some form of medication that can provide you with some form of relief.

I also hope that you can find a easier job. I find it very rude that people were gossiping about you. I definitely understand your pain there, many people at my last job thought I was over exaggerating about how much pain I was in. I know this is not the right way to think but sometimes I wish I could make them just walk one day in our shoes to see how it feels to be stuck with such a horrible disease. Healthy people just do not realize what a gift they have.

Have you had your vitamin levels check recently? one having CD and two with you having the surgery low vitamin levels could be a big problem for you. It can also cause a wide array of symptoms from fatigue to depression to muscle spasms and cramps.

What type of diet are you on? There are a few different types out there that might be able to give your gut some rest.

Again welcome and please feel free to vent, rant, ask questions, and please keep us updated on how your are doing.

We often feel alone in the world because people do not understand what we have to live with. Here you are among friends who understand you battle and will always be here to lend a ear, help, or just a kind word when your feeling really down.
 
Hello Earnellzwifey. Thank you for your post.

Yes unfortunately most people do not know a lot about Crohns disease and think we are all just making a big deal about stomachaches. People can be cruel. We are all different with our own sets of life circumstances and illnesses. I am glad that there are people out there who are rarely sick and never miss work, but unfortunately that is not me. I understand what you say about people walking in your shoes. I wouldn't wish this on anyone, but in our world today people could use a little more empathy and compassion.
Did you leave your last job due to the disease, or some other reason?
I have not had my vitamin levels checked lately. On two different occasions I was deficient of vitamin D. I started taking B complex a few days ago to see if that helps any.
Could you tell me more about your B12 injections. Such as...what made your doctor give you this? Does it help you at all?
Fatigue is terrible for me...I am hoping the B complex will help that.

As for my diet, as I had mentioned to Stephen, I have struggles with that. I always have been an overeating food lover. I am doing better with that, but have not completely gone on any kind of special diet. I have been wondering if a gluten-free diet would be helpful at all. I understand Celiac disease would make one go on a gluten-free diet, but it has to do with inflammation as well so, who knows.
Do you have any special diet that you follow?
Thanks again for the reassuring words.
 
Orchid81 I lost my job in 2009 due to my health issues. I am now permanently disabled and on SSDI.

As far as the b-12 go my mom is b-12 deficient and on shots. We have the same general dr so he suspected I might b as well. The test came back positive an he started me on monthly injections. They do seem to help but I think I need to take it more often than once a month. I still battle fatigue and nothing really seems to help.
 
Oh sorry I forgot to mention my diet I am on a low residue or low fiber diet and it seems to help with the stomach cramps I get right after eating.

I am using a app on my phone and I cannot go back and look at the other post like I can on my computer.

My biggest vitamin problems are potassium, magnesium, and sodium. I actually have to eat a teaspoon of salt everyday. This is no help toy high blood pressure, so now I have to take 3 pills a day just for that. My diet is not very good for my diabetes but the insulin seems to keep that in check.

If you have any other questions please let me know.
 
Thanks for the information. I am trying not to have to apply for disability or anything. I know I can no longer do my current job for much longer because 16 hours is too much (even for a healthy person).
I have a doctors appointment on December 18, and I think I am going to request that my vitamin levels be checked.
I was surprised to hear about the sodium issue and that you have to eat salt everyday, wow!
It seems so many problems stem from Crohns, or are made worse when you are trying to treat other issues. It seems like I am constantly learning new information about the disease!
 
I wanted to add my welcome to the forum. I am sorry that you are still in so much pain, and that your inflammation recurred so quickly after your surgery. I hope that your doctors will be able to find you some relief from your pain.

As far ass diet is concerned, I too struggle with it. I too am a food lover, and restricting my food, even when I think it will help me feel better, makes me rebel against myself. On top of that, I could never find foods that always made me feel worse, so I was never motivated enough to really be fully in control. If you find some kind of foods that really make you feel BAD it might be easier to stay away from those things. I have never found anything so clear.

Good luck, and take good care of yourself.
-Lisa
 
I wanted to add my welcome to the forum. I am sorry that you are still in so much pain, and that your inflammation recurred so quickly after your surgery. I hope that your doctors will be able to find you some relief from your pain.

As far ass diet is concerned, I too struggle with it. I too am a food lover, and restricting my food, even when I think it will help me feel better, makes me rebel against myself. On top of that, I could never find foods that always made me feel worse, so I was never motivated enough to really be fully in control. If you find some kind of foods that really make you feel BAD it might be easier to stay away from those things. I have never found anything so clear.

Good luck, and take good care of yourself.
-Lisa
I was the same way... and it has taken 2 months to train myself differently. After a while, it's about finding foods that make you feel better (than even before you had Crohn's) that really motivates you to stick with it.
 
Orchid, welcome. We are here for you! Fell free to vent among friends. We are a family, community and support system. Are you currently on any meds? They diet I'm trying is Paleo ( caveman) diet since i love my meats. I've learned dairy is a no no so i stear clear of that. Vitamin and mineral levels are very important to keep in check. A lot of people here do really well on juicing. These are a few more ideas to ponder. Again welcome n i pray things turn around for you!! Muah- hugs-
 
Thank you all for the welcomes and kind words! LisaL- it is so hard to watch diet when you are overeater, lover of food or both. Food was my comfort and it got more and more frustrating as my diet became more restrictive beforehand surgery.
Stephen- I haven't experienced any benefits from eating better. As soon as I start to, I go back to square one it seems.
acheallova- I was watching something similar to the paleo diet. Stephen posted a video on it in an earlier post. Do you find you can eat red meat? It seems like red meat hurts me a lot.
 
I wanted to add my welcome to the forum. I am sorry that you are still in so much pain, and that your inflammation recurred so quickly after your surgery. I hope that your doctors will be able to find you some relief from your pain.

As far ass diet is concerned, I too struggle with it. I too am a food lover, and restricting my food, even when I think it will help me feel better, makes me rebel against myself. On top of that, I could never find foods that always made me feel worse, so I was never motivated enough to really be fully in control. If you find some kind of foods that really make you feel BAD it might be easier to stay away from those things. I have never found anything so clear.

Good luck, and take good care of yourself.
-Lisa
I too have not been ever to really define what foods make me worse or not. I do now that if I have fresh veggies to many days in the same week I seem to have issues but that is about it. The Paleo Diet would not be a good choice for me since I am not a big meat eater. Actually I do not eat enough daily unless i am prednisone then you better watch out. hahaha. I do not understand why I can not lose weight. I am probably the only one with CD that complains about being overweight. ;)
 
Hi orchid81 !
I read that you are taking medication for your depression. I had a lot of low times where I felt horribly depressed because of this disease and the first time I mentioned it to my GP she immediately prescribed me antidepressants. I would be weary of them however because many people get used to them and then their depression gets worse. Also, vitamin deficiencies can make you feel depressed. Instead of taking the antidepressants I would come on here and vent and read other posts and advice and that helped me have a better outlook. It really helps to realize that there is a community here, not only for support, but also with a lot of experience and information to help you.

As for the gluten free diet I have tried it before and didn't feel a difference but you may notice one. As some people have previously recommended, juicing can be a good choice and may be more worth while. I found this thread to be informative http://www.crohnsforum.com/showthread.php?t=41838 . I too don't have any obvious "trigger foods" but what I find gives most people, even healthy people, trouble is really rich foods like fast food and a lot of restaurant foods. Overall, I think making sure you are getting adequate nutrients is the most important part of your diet. Hope this helps :)
 
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