Cannot Get Symptoms Under Control

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Joined
Oct 12, 2012
Messages
48
Location
Columbia, SC
I am a 26 year old female and I have suffered from Crohn's disease symptoms for 13 years/diagnosed for 11 years. I have been on pentasa, 6mp, remicade, and Humira. I have had three surgeries. I suffer from cramping, anemia, and loose bowels. My doctor has recently given me meds for nausea and cramping, but I can't take them before or during work bc of the drowsiness side effect. 6 mo. Ago I a Colonoscopy and a upper bowel exam. Only a small area of disease was found near the astemosis (from surgery). I have a appt on Thursday for a MRI Enterography and a DEXA scan. I can't get my symptoms under control!! I tend to feel ill/nauseous no matter what I eat. Iron makes me cramp worse. Help. Any advice??
 
I'm sorry to hear what you're going through, hingrum. :(

Are you currently taking any medications or Crohn's? It sounds like methotrexate or Cimzia might be a logical next step.

About the nausea and cramping medications, do they seem to relieve your symptoms when you do take them? How often are you able to? Have you noticed any change in the drowsiness since you began them? It's frustrating that you're unable to take them as often as you need to.

:hug: I hope you feel better soon!
 
I have been on Humira for over a year. My last surgery was April 2012. I was on Remicade for probably close to 5 years or more. I do notice drowsiness with the meds. I take them as needed. Usually when I get home from work if needed.
 
I'm sorry you are going throught all this. I too have had 3 operations and still have the samething as you. We WILL get better.

Jim (POPS)
 
What meds are you taking for nausea & cramping? I take Zofran for nausea, and it works great and no drowsiness. The only side effect I've noticed is mild constipation if I take too much.

I wish you a lot of luck with your tests tomorrow - hopefully they can shed some light on why you're having such bad symptoms. Good luck and keep us posted!
 
Hey hingrum,

I feel with you that you still can't get Crohn's under control. I also struggled many years, although I had a few good years in between since being diagnosed in 1999. The last 15 months, however, were very good with virtually no symptoms.

Just a few things I know that really, really helped me:

A. Getting the anaemia under control by getting your long-term iron levels under control. i had the same issues with most iron tablets prescribed, they led to cramping and diarrhea. What really works for me are dissolvable 80mg iron tablets with vitamin c. Although they don't taste well and you need to really use a lot of water to dissolve one tab (I take 3 times as much as specified on the description). Additionally I take 2x80mg iron tablets called Tardyferron (a French brand) that are the only iron tabs that I can take without cramping problems - they have some kind of strange red coating and way of binding the iron in tab form.

If you just can't find tabs that work for you I suggest iron injections or iron infusions (both iv).

No more anaemia also means that your body generally fares better and you feel better.

B. Sport, if at all possible 3 times a week and at least an hour... Some type of workout where you sweat (running, rowing, fitness club etc.). I know it's hard to do if you are in a flare or have constant inflammation, but sport really helps with keeping me in remission.

C.vitamin therapy... There are several threads about that on this forum, specifically vit D and also B6, B12 etc. and also eliminating calcium, magnesium, zinc etc. deficiencies.

I think next to diet, meds and stress relief the above is the reason why I have been on my longest streak of remission right now. At the end I think it is the combination of a lot of different things that come together.
 
Thanks everyone for the support and advice. The GI called today and said there was a mass in my lower right abdomen. The radiologist couldn't quite make out what it was. Most likely a mass of inflammatory bowel that has been matted together. :( not the news I wanted to hear or was expecting! I have an appt. Tuesday morning with my surgeon to schedule an exploratory surgery to determine exactly what the mass is.
 
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