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Hi, I'm 26 and I've had UC for almost 10 yrs. For the past 6 months I've had so many flares that I've been on and off prednizone, upped the 6mp to 100 mg, but nothing is helping. I'm still having flare up (espicially in the a.m.). They've talked about putting me on Remicade but they want to keep waiting it out. I'm so frustrated and I've been feeling really depressed. I don't even know what to eat anymore, the only thing that doesn't make me sick is Ramen noodles and I can't live off of that forever. Just so irritated and it's hard to have a positive attitude anymore. I'm also getting married in Oct. and just want to NOT be sick for my wedding! Just looking for any suggestions or to hear that someone else understands what this is like. Thanks for listening!

 Reply posted for Sarah.

Hi Sarah. I know exactly how you feel. I've been dealing with uc for nine years and know how frustrating and draining it can be after this many years. Sometimes hard to remember that we are not this disease, escpecially during a flare. I'm dealing with one now and I always seem to revist the feelings of isolation, depression and lonliness. Not sure why your doc is waiting on the Remicade. I tried it but developed an allergic reaction and am now waiting to start Humira. I hope it helps you when you get to that point. There is something out there to help you. I know you'll find the strength to keep fighting. We always do. Sometimes it just takes longer to find the energy. Best of luck and know others are here to support you!

 Reply posted for Sarah.

Hi,
Don't give up. I don't know why more doctors don't put  patients on Remicade. I started on it a year ago and it has really helped. It can reduce flareups and put you in remission. Talk to your doctor.

 Reply posted for Sarah.

Hi Sarah,

I know how you feel.  Sometimes I feel like I could just give up but something keeps me going and something must be making you keep going.  I have two girls ages 7 and 5 and a great husband.  I also am a teacher and believe me some days I just want to stay home and not talk to anyone or see anyone.  I am currently on no meds, not by choice.  If any of them worked I would be on them happily.  Have you tried powdered glutemeine (sp?)?  Every morning I have a tsp. in my water while taking 2 acidipholus pills.  I also take fiber at night.  When my GI suggested that I was thinking -NO WAY, that will put me in the bathroom more than I already am.  But, it seems to work as a sponge for some people and I think I may be one of them.  I am also training with Team Challenge and going to run my first 1/2 Marathon for CCFA in June.  Running is a huge stress reliever for me.  It's probably horrible on the joints but great for my mind.  I hope some of this helps and it's hard to stay positive when you feel horrible.  I understand and keep posting! 

ngc

 Reply posted for Sarah.

Do not give up.  Please tell yourself that there are others in this world that have it worse than you do.  That is truly what keeps me going every day when I feel like throwing in the towel.  A positive attitude does wonders for yourself and those around you.  You might not realize it, but believe me!  I wish you the best in your upcoming wedding and hope you have a break in your health for the best, soon!  Sincere, Since1987

 Reply posted for rachbr.

I almost forgot, the SCD diet I tried for a little while and all I can tell you is for me it was too expensive and didn't give me enough energy. The problem is that you need a diet that will give you lots of nurishment, but that will not tax your system. The diet the chemist has for me has all the nutrients your body needs but is almost "pre-digested" so your body doesn't have to work to digest things. This allows your energy to go into healing. I work full-time and it's way easier to do, you can make enough on the weekend to get you through an entire week without having to cook all the time. The SCD diet also tells you to start by just eating chicken broth for a few days....I tried this and it was terrible for me. I had no energy and was starving. This diet is way easier and gives you more energy. 

 Reply posted for Sarah.

I know exactly what you are going through. I'm 25 and battling the prednisone and lialda trying to wait out the Remicade. I have some information that may be of interest to you. It's a diet that I am trying. I was trying it before but I was already in so much of a flare up that it wasn't enough to curb my symptoms. I am weaning off prednisone again and will begin the diet in a few days. I found a chemist in the area that specializes in autoimmune inflammatory diseases and he is working with me and my diet. He believes the colon can heal itself if given the right environment. It's a lot to explain here in text, if you are even interested. All I can tell you is that I have tried tons of things that haven't worked and feel it's worth a try. The diet is very simple, and inexpensive, so why not? My e-mail is rbrhoney at gmail. Please contact me if you would like to know what he has told me to do. Again, I'm trying this out myself so I can't guarantee anything, but neither can your doctor. I have contacted others that have tried this diet, even people with worse symptoms than you can imagine that it has worked for. It's worth a shot right? Let me know and I will give you all the details I can on it.

 Reply posted for Sarah.

Hi Sarah,
I don't know what happened to the first portion of my response to you, it didn't post. I had wrote too long of a reply and I tried to have it posted in two parts and the second part is all that showed up. So I'm hoping that I can get this on before the other is read first.
I've had very positive results from the Remicade. I was 28 when diagnosed with Crohn's. Having had the UC for 4 anguishing years. Oooh the pain was excruciating! Huge and long term dosages of prendisone. Weight fluctuation with every new treatment. I had not had the option for surgery. I was in patient so many times. The stays would get longer and longer. I had a 7 month stay and returned home with 20cc small intestine remaining, an ileostomy and scars. The Remicade came later... I am grateful to have had this. I have been receiving Remicade infusions for 14 years and have had only a few serious flare ups that I needed prendisone or entocort. I was able to enjoy life with my four children in fullness for a long time!
Being your own advocate is crucial! Ask your doctors "why" you can't receive the Remicade. Then be sure to ask him what ARE your other options! Expressing what you feel is so important. To your family and friends as well as your doctors. If you aren't confident that your doctor is not answering your questions or making all the effort to helping you, CHANGE DOCTORS!!!

 Reply posted for Sarah.

Continued to Sarah-
I hope this gives you some encouragement to consider the Remicade. Always remember, although we can sometimes receive some comfort from the blessing of research and medicines, we truly find a more fulfilling comfort when we have someone to be there for us emotionally, one who can understand our desire to want to succeed in conquering our battle of unexpected "war". In the mean time, HE's there... 24/7, and able to give you a peace about whatever the outcome may be from another exasperation and flare up. He knows...and hurts for you. But in knowing His promises are very real, He is faithful to never leave you nor fail you. When we are weak, He IS strong. It's when I've personally seen Him doing His greatest works in me. This disease has a way of humbling us, having us slow down to talking out to Him more.

The truth is we all need Him, but the fact is He's chosen to reveal Himself to us in a more personal way through this "evil" disease. The fact that He knows what we are capable of handling should give us quite a bit of confidence. God, THE God....knows that we are this strong ...? It should make us consider just how strong we really are!

Some of us try to be so darn independent that we try to make our selves bound and determined to doing things ourselves..our own way. This "challenge" of trial that we face with Crohn's keeps us asking more from Him. He wants us to know He's here for us and the more we need Him the more time we spend "talking" to Him, praying to Him.

I didn't intend to make this a "spiritual" message. It just happened this way...God tends to do that sometimes (smile).  Be confident through this Sarah ! Don't hesitate to expressing yourself in "this" season of change your going through.

 Reply posted for Sarah.

Sarah,
I agree with Alan. SCD has completely changed my life over the past three years. The first few months are a bit up and down so if you do give it a go start soon and you should be much better by October.

As well as the SCD references read Life without Bread written by an Austrian doctor, Wolfgang Lutz, who has treated people with IBD by using low carb diets for years. He has lots of theories on why this kind of diet improves health and having read the book only fairly recently I now have answers for the way my health has progressed and also for some of the hiccups on the way.

I was really depressed and could only see my health going downhill when I started but decided to try just one day at a time before giving in to surgery. It was the best decision I ever made.

Sending warm wishes from the UK that you'll feel better soon.

 Reply posted for Sarah.

My 19 year old daughter has had UC for 3 years.  She's been on many meds and is now on her 4th doctor who she loves and is an IBD specialist.  Her previous doc who was a pediatric IBD specialist wanted to put her on Remicade since she was in a flare for about 4 months and nothing was working.  After reading many posts on this website, I went to Whole Foods Market and they suggested a probiotic called Ultimate Flora Critical Care 50 Billion.  That helped her in about 3 or 4 days.  She told her new specialist about the probiotic and he said that is the probiotic he recommends to his UC patients which seems to help.  He said lots of UC patients get "bacteria overgrowth."  She just saw him in October and said to stay away from sugars which are so bad for bacteria overgrowth.  My daughter really watches her diet.  No junk foods, no processed foods, no meat, limits dairy, no sodas.  Start keeping a food diary.  That helps too.  What meds are you on?  My daughter is on Lialda and Azathioprine (he wants her to stay on that one through college).  I found this website to be very helpful.  Good luck and keep us posted.

 Reply posted for Sarah.

we with crohns feel your pain.
when it gets bad ,come back here and vent to the board and it will feel a little better.
i will keep you in my prayers
think about the special day coming up and good luck''one day at a time''

 Reply posted for Sarah.

I hope you're expressing your feelings to the doctor. Sometimes the seem to think we're managing better than we are. I don't know if that would be more meds, maybe antidepressants, or change from the iBD meds if the aren't working or maybe even surgery. It's important they know about the "whole you"