My daughter can't hold down anything.. water included

HELLO! I know there has been a lot of push for you to get surgery. The GIs in my area were also pushing the idea when I was in a similar situation to you. The only other option they suggested was Remicade or Humira. These drug have some serious potential side effects; most of which REALLY scared me! It was either one of those drugs or surgery. I opted for Humira. I'm not ready to part with my colon just yet (even though it's been a pain in the *ss). If you haven't tried Remicade/Humira perhaps you should give it a go. I get the sense that you're quite young (talking to the daughter; I don't recall if your mother mentioned your age) and I was quite young when I was diagnosed. I know I didn't like the idea of losing my colon. I don't know how you feel about it. I know I will probably exhaust all possible medical options before I decide to get surgery. I just hope I don't get one of those nasty side effects anytime soon. I know increased chance for some cancers was one of the side effects for Humira. That REALLY scared me but my doctor explained to me that it's just not practical for me to be planning 10-20 years in advance. He asked me if it was really worth living all these years in discomfort and pain (he's talking about the UC and flares) just so you possibly don't get cancer in the future. He said you're more likely to die from a car accident on the highway than from cancer. He tried to put it into perspective for me. I don't know if Humira is working for me 100%. Like I mentioned above I have adrenal insufficiency so I'm trying to battle 2 things at once however, no more bloody stools and diarrhea so I think something good is happening! In case you were curious, I take 1 shot of Humira every other week. I opted for Humira over Remicade because you can just inject yourself at home so you don't have to go into hospital/clinic and wait there for hours whilst getting infused. If you're not good for giving yourself shots, you could get your mom to help you :) I know when I first got started, I could do it myself so my mom helped. Now I'm fine to inject the drug on my own.

Julia, I hope you feel better soon.

That's good to hear. Take it day by day.

I was diagnosed at 15 and it was really bad, but I never took strong meds, so I eventually got better..I go years without flare-ups. You haven't mentioned diet...there is hope because I live a perfectly normal life, run a business full-time, and maybe 10 people at the most know that I have UC. Just check around, do research, and try as many options as you can that won't cause more problems. There are many helpful threads in this forum.


IAMthe_4MyDaughter Julia are you out there?? Wondering how you are!!

SouthernGirl,

Julia is feeling better. She still doesn't like the idea of being on Humira but it has helped her a lot. She's always on here reading so am I. I feel weird posting about her with her having her own profile but I wanted to know how everyone was doing and to let everyone know she is better.

I hope the same will happen for warriorprincess' daughter really soon.

4my daughter, That is great news about your daughter!!
I have been following these posts since my daughter got diagnosed. It's your story that convinced me to join!! My daughter will be taking Humira soon too, her last remicade infusion is jan 14th. I's scared all this powerful immunosuppresives taking over her frail body!!! I cant sleep!! Thanks for the support and we gotta hang tough I guess.

Just another thought...Imuran can take several months to kick in. I believe you said she had just started taking it? I had many good years in remission just taking Imuran. When I initially started taking it I believe it took around 3 months to see results.

This is a great site and full of great information :)

Thanks for the feed back!! My daughter UC is severe primarily top half. Bottom have has inflammation and colon looks ok (last colonoscopy 08/12) She has severe uc but only has 4-6 bowel movements a day! She never had or has more, they're simply painful and it's bloody water, very little stools. The doc too says its unusual but that it does happen. I'm trying to get another GI to look at her file, maybe he'll see something our GI didn't. -

Scrambled eggs have been easy on me during flares...a few nutrients there!

In all honesty, I'm not sure where I would be if I didn't have some tough love from my mom. Even when I was halfway bleeding to death she would tell me to get over it, you're not that sick, GO SOMEWHERE. I had to be pushed out of my "UC comfort zone" sometimes and I was glad I did. She has always been supportive and did research for me. She has agreed with me on the bad GI's I went to and for the last several years I have been treated by a nurse practitioner who has Uc. My np won't give me oral steroids and I don't want them.
If I ever got really down on myself crying, unless I was in a lot of pain, both my parents would curse and yell at me until I was more determined than ever to change something. I have a great relationship with my parents, and I stay with them more even though I have my own new home...I'm an "only child". I'm successful, happy, barely have uc, and just got invited to join a panel for a national retailer magazine! I'm really anxious to see the opportunities it brings. Guess my advice would be to not always treat her like she's sick and push her a little to fight uc at all angles, including attitude because I think it's one of the most important components of success.

Post Edited (SouthernGirl6) : 1/5/2013 5:59:29 AM (GMT-7)

warrior: It is all very overwhelming. The truth is it is overwhelming for even the doctors. That's why they don't know what causes UC or how to cure it. They have run up the white flag and treat symptoms only because they don't know what causes UC or how to cure it. It's not really their fault, medical knowledge just isn't there yet. This is actually my second round fighting an autoimmune disease. My first one taught me that doctors really don't know squat about any autoimmune disease. I had to research and investigate for myself and after nine years I finally figured my first one out and "cured" myself. I haven't had any problem with it in over a decade. The doctors were basically worthless.

I'm not sure where your nutritionist is coming from. I suspect that they are a nutritionist only and not a real "doctor". What I'm trying to say is that they have probably developed a diet that helps your daughter's nutrition because of her UC, not a diet actually designed to treat her UC and make it better. All I can say is that the proof is in the pudding. If she has gotten worse then it is obvious that the diet is not working. I am at a loss as to explain why the doctor has not allowed Vitamins or probiotics. To me those sound like no brainers. Vitamins will help with nutrition as UC patients are often lacking in certain vitamins and need supplements. They probably won't do anything to help UC though. Probiotics on the other hand can have a major impact on UC. Some have even been proven to put UC in remission. Unfortunately a different probiotic seems to help in everyone and finding the right one can be tricky. VSL#3 is the most studied and the best place to start.

Even though this stuff is very overwhelming your best bet is to learn as much about it as you can and be your own doctor. It is very overwhelming but in the long run you will get much better results than just blindly following a doctor. The truth is they don't know what causes UC and don't even try figuring it out. They don't know anything that cures UC so all they do is treat the symptoms. The best way to treat any disease is to find the root cause and treat that and you are left to do this by yourself. Fruits and fruit juices are often not good with UC and can cause problems in many of us. That's why I recommended that you dump the mango/peach juice. I highly recommend vitamins and probiotics. There are also many natural treatments which can help and many of these actually have valid scientific studies behind them. I recommend trying one at a time for at least two weeks and see what happens. If nothing you dump that one and move on to the next one. If you get better you can either continue with just that one or add an additional one and continue with the process.

Thanks everyone for the feed back. I honestly do beleive that these drugs are just like a bandaid. It doesn't fix the root problem. Ny daughter is a warrior. She was in and out of the hosital , missed and lost her first year of college. She has never lost her spunk . This year she went back to school ,suffered everyday, missed 2 months of school but fought tooth and nail and completed her semester and had the highest scores in all her classes. She has never gave up, she refuses to let this disease stop her from living her life. But things changed when she lost her job because of hospital stay and she this flair-up has taken a toll on her emotionally. My husband and I, continue to push her and support her. I bend backwards to make her happy, i force her talk about how she is feeling to get it out and process it. The bleeding hasn't stopped since may2012 and the fact that her last visit to er she was given blood.,freaked her out. We're stuck, we just can't see the light at the end of the tunnel yet. You guys are right docs don't help at all. about the VSL#3 is it available in certain stores or can it be bought on line? I am grateful to be have this platform with so many Uc veterans that sre so supportive! I read up on Tumeric and it's anti-inflammatory agents. I think that should be our next step to help the inflammation in her intestines before we begin a new diet. I am for sue never buying any juice again, I had no idea. I guess I have to learn more about foods and their benefits. thanks again!!

DAUGHTER DG: OCT 2011

Been in severe flare-up since May 2012

MEDS:

Remicade dble dose/5weeks

Iron 2x/day

Calcium D: 2x/day

Imuran 50mg: 2 pills at breakfast

 

Post Edited (warriorprincess) : 1/5/2013 11:15:10 AM (GMT-7)

Thanks Gary, her Gi said she can try Align only after she gets in remission. But it's taking to long and unfortunately we don't have a family doc, its very difficult to get one here in Quebec, Canada.
What's your thoughts on Align.
DAUGHTER DG: OCT 2011

Been in severe flare-up since May 2012

MEDS:
Remicade dble dose/5weeks
Iron 2x/day
Calcium D: 2x/day
Imuran 50mg: 2 pills at breakfast