At Wit's End, Need remission Advice

[pcojt10]

I am at my wit's end with this disease, and feel like there is no way out. I've lived a good life, have a beautiful wife, and everything was going great until my diagnosis a year ago (I'm 31). At that point, I had taken a job overseas and uprooted everything in order to save for a year, come back, and start a family, but that was all ruined by a flare up that started while I was there. Everything since then has been terrible - the weight loss, the "accidents", the inability to play sports or run, feeling tired all the time, turning down invitations to weddings and vacations and not being able to be there for my wife.

What I need to know from people who have been there before...does it ever get better? Can I improve? I'm on Remicade and have put the weight back on, and now look like my normal self but am still having D 8-10 times a day, have not had a solid BM in a year, still can't play sports or run, and am not the husband I need to be. Does this get better? Can it? Is there anything I can do, or is this the rest of my life? If so, it'll very soon get to the point that it's not a life worth living, since there's no way I can do this for another 50+ years, let alone a couple more months.

 

[If*]

Hi, I am really so sorry you are struggling (my gosh, I do understand) but I do believe it will get better. The frustrating part is, when, for how long...none of us know. I have felt the 'fight' many of times my friend, and I have to tell you no matter how difficult the struggle, fight, I am so happy to still be here. Maybe not so much for just me, but for those i love and care for, so i can even try to uplift, encourage and hopefully give hope to someone. This journey is long, but I think you will be surprised at the depth your life takes on. We all take our lumps along the way. I don't believe you will be disappointed to the life experience. Hang in there my friend, many will be touched by you, and you will give strength to others, and I believe life will be good..
How is your diet, do you notice food triggers. Sometimes this can help complement treatment. Have you had your b12 checked?

Be well, God bless

 

[shamrock15]

It can absolutely get better. I have gone through everything you have, but remicade wasn't available when I was diagnosed. Done 6 surgeries and am now on remicade and azathioprine (ask your doctor about maybe adding it - remicade took care of about 80% of mine, aza finished the job). I have been in remission for approximately the last 8 years and have had the disease officially for 27.

It takes time for your body to heal. As it progresses, you should see some of the symptoms lessen. With everything my system has been through I can often now get solid stools, albeit not what a non-crohnie would call a usual one. I am cycling close to 2000 km a year now as someone who is almost 50.

If mentions some good advice - keep a food journal of what you eat and drink, when you toilet and consistency of stool. You probably will notice some patterns fairly quickly. As you heal you may need to modify your diet as well. There is a lot to take in with it, but you can live a great life with crohn's. Fingers are crossed that you get the full healing soon!

 

[darubo]

I'm so sorry you're having such a difficult time...I understand & just want to send you some support & encouragement...you'll be in my thoughts & prayers.
Dana

 

[Clash]

So sorry you are struggling.

Have you spoken to your GI about the issues you are still having? How long have you been on remicade? What is your dose? What is your infusion schedule? Have you had tests to check levels of remicade in your system or to make sure body hasn't built antibodies? What about testing like fecal calprotectin stool tests, imaging etc to determine if remicade has tackled your inflamed areas?

Some people require higher doses or shorter infusion schedules as well as the addition of another med like methotrexate or imuran.

Hope you see improvement soon.

 

[pcojt10]

Thanks for all the kind words and advice. I think I just needed to see from people who had been there before. I actually had an infusion last week where my dose was doubled. Thankfully my test showed antibody levels were zero, and even though my Remicade levels were around a 4, which can technically be considered where people start to see improvement, I am hoping that upping the dose and my new diet (no gluten, all organic, probiotics, and plant-based) helps take me over the edge. Thanksgiving is going to be hard passing on all the rolls and stuffing and beer, but better than spending the rest of the weekend on the toilet.

 

[Grant]

Hi pcojt10, I'm not sure if you've had surgery or not. But Questran or Questran light could really help you as it binds things together. It tends to flush out the fluids from your body so you have to keep your fluids up but it does work. May well be worth pursuing.
I've been there & you have my complete sympathy, my very best wishes to you.
Grant