Lemonhead--I'm very curious about your nausea and malaise. Seems similar to want happened for me. Hope yours passes. As for me, I'm still off the protocol. It took four days but the malaise and...
Well, I threw up again today--quite mightily I might add. I had felt well--finally able to get a little lunch down--and craved a milk shake. Had less than 4oz and boom. For those of you who like me...
Anyone on tyrosine? Among its uses to help build protein is appetite suppressant. Ugh. Just lost the vomit battle. Surprised lunch food was still in my system. So good news that my transit time is a...
@Nicecupoftea--well, I haven't approached a cliff yet! Lots more to my life to celebrate and live for than just this damn and horrible disease! :-) Big turn of events and big decisions to make. GI...
Spoke to my naturopath last night. Lab results not in and they have to go to Dr. Hintz first as she is working w him and Kalish. Says Hintz is pushing the dopamine which is most likely causing the...
Mark---Actually, my current dosing is not too much different from yours. NeuroReplete 4 capsules 8am 4pm CysReplete 2 capsules noon 4pm 10pm D5mucuna 1 capsule noon 10pm Today is day 35....
Yes any day now. Just had the 10pm 2cys+1D5. All I could do to keep from throwing up and then stomach cramping. Subsided in about 15 mins. If I stop will I have to start all over again at day 1 or...
I'm seriously contemplating the ER. The heartburn, nausea, malaise, and depression are weighing on me. The symtoms match dehydration butni dont think im dehydrated. Anything I can even get in my...
Lemonhead-I'm working with my naturopath who is finishing a training with Kalish/Stein/et al. She seems to get my urine results in 5 days. Miracles-looking forward to hearing your progress as well....
Lemonhead--the protocol is definitely helping my crohns symptoms. My output is thick, I'm not writhing in pain--no need to use Vicodin, and I haven't used prednisone since I started. I'm able-- when...
Thanks for reply. I am getting nervous. The fatigue and lack of appetite are scaring me. I appreciate your assurance. I did the second urine test last Tuesday-a week after starting the D5. I'm...
@lemonhead-sorry I didn't answer earlier. I am in CT....
Hi all--I was doing quite well on the protocol until a little over a week ago when we added the D5 Mucuna. I have no appetite. Have lost 7lbs. Went back to some flour and carbs just to keep the...
Hello--oldMike directed me to you and I am so grateful. I started the NeuroReplete CysReplete protocol 3 weeks ago and now in my fourth week, we've added D5 Mucuna. I'm so grateful to meet someone...
Yes. Protein is great! Ask your nurse for ideas. My back side--took anus, rectum, colon---open wound was 10 centimeters long and 7 centimeters deep. Lots o packing! It did take a while to heal but...
Lots of other tests you can request: MRI with contrast and MRE, CT scan. But sounds like you need to see doc ASAP. Be sure to mention kidney area pain. If you've had a lot of diahrrea and have lost a...
Hang in there! Last March I had to go back on prednisone after having been off of it for years. 60mgs and it was a slow taper. But my flare was bad and it was a surprise. It certainly isn't great to...
Like everyone around me, I've had a severe cold for 10 days. I was taking OTC products like Tylenol cold and sudafed generics. I started to cramp a bit and thought it might be all the cold meds. 3...
Good idea to check in with doc. Maybe a little prednisone or antispasmodic to get through holiday. Transition from school to break and all the holiday foods can take a toll and kick things up. Check...
Thank you so much for asking. I am grateful. Finally after almost two weeks at 30 mgs, , I am down on the prednisone. I'm at 15mgs and trying to get off once again. Energy and strength finally coming...
Since early November my GI has had me on and off prednisone to battle epigastric pain that might be caused by a fistula to and from my jejunum or just from activity in the jejunum itself. The...
I suggest you call GI regardless. In our situations flus and stomach bugs can trigger a flare. Doc might have few suggestions or be able to get you hydrated if needed. Good idea just to check in. Get...
Started birth control pills at age 22 and am 41. Diagnosed with Crohns at 13. Never had a problem. Take an active pill everyday so I never get my period. Really helped with my anemia and when I am...
Sounds like you really need some study to find out if there is stricture and/or blockage. Please see your GI ASAP. Hopefully you just have some narrowing that can be dealt with meds. But you need to...
What's to be done? Any advice? Keep things moving? Low residue (though that doesn't seem to be helping either). Wow in all these years with fistulas I never thought of that-- my fistulas were from...
Had a fast and furious flare --I have a loop fistula in my jejunum and lots of activity there. Doc put me on very short course of prednisone. I have an ileostomy. Just finished the prednisone today....
I suggest you call both your pharmacist and Abbott, the company that distributes Humira. They can talk you through the side effects and may have some suggestions....
For a time, I needed regular iron infusions, magnesium and potassium drips, and saline for dehydration. I've had a number of transfusions. The staff was very thorough each time. First, they took a...
Are you in the US? If so, you might check your state's disability and medical leave policy. Also, does your company have an Human Resources department? They should be complying with state laws on...
I've been dealing with Crohn's disease for 28 years. Lately, almost everything thing I read related to natural, functional, and integrative approaches highly suggests on psychotherapy. The latest...
There is a great book called Cooking Well for the Unwell. When I had my ileostomy, I didn't want to eat at all. This book was immensely helpful and it was in my library. Also, try little things like...
Lynn-I have an ileostomy. After 25 years of pushing through stricture, inflammation, obstruction etc with meds and diet, I had no choice. The ileostomy saved my life. It is now three years later and...
Resting from meds sounds dangerous to me. How about talking to your doc about a soft diet or EN, supplements and the like--a nutritional way to rest your system?...
Believe it or not, mine is 113. Was 120 in March....
Are you suggesting a feeding tube? TPN? EN? What are the reasons for colon rest and how is your current nutrition, weight, protein, H &H, kidney function?...
Yes your symptoms do sound familiar and I highly suggest doing whatever work up your doc has in mind. Nightsweats are often associated with lack of nutrients and immune system issues. However,...
I know you don't want to hear this, but I think the ER is a good idea. The red D could be a significant loss of blood. The constipation could have come from pain killers even if you haven't had such...
I had very similar experiences when I first had my surgery. It seemed like everything gave me issues and nothing was ever the same. I saw a nutritionist who helped determine how to pair and schedule...
Anxiety steps right up to meet us with such diagnosis. There's just so much chamomile tea I can drink, alternate nostril breathing I can do, and so many calming yoga poses I can hold. Three years...
I'm 5'2" with an ostomy as well. Crohns for 28 years. I too was down to 85 lbs and then 78 at one time very scary. At one point, I was on TPN and told to eat 2500 calories a day. The best advice I...
Crohns can be a very evasive disease--so difficult to diagnose. I'm no expert but I too think it's time for an upper GI with barium follow through or a CT scan with a barium swallow. Sorry--it's...
Hi--you are not alone. Perianal and reto vaginal disease along with severe and aggressive disease in my colon led to a permanent ileostomy for me 3 years ago. It was very difficult to accept but it...
Liver issues are common with Crohns. An enlarged liver can mean a number of things from just inflammation in the body to bile duct damage, jaundice, or a form of hepatitis. However, don't push the...
I was diagnosed with Crohn's 28 years ago. In March, my sed rate was 120 and now it's 102. After 3 years of no Crohn's symptoms (but trouble with my kidneys and liver), Crohn's is back big time. Even...
Fatigue can be a side effect from humira. I have been on it just 8 weeks but notice that two days after the shot I am exhausted and fall asleep everywhere- as if I'd taken a sleeping pill. Also, a...
Glad you will get "home" to have supportive family and docs around you. I was diagnosed 28 years ago. This disease can be relentless. I hope and pray you receive the care--medical, financial,...
My husband and I live on a prep school campus and have been told we are to move into a dorm. Being on humira, I'm very worried about diseases that high dorms seem to cultivate: flu, measles, chicken...
Sounds like your Ccrohns is acting up and doc is thinking of maintenance med. I was on 6mp on and off for over 15 years. With pentasa, it was a great fix for me. I barely had any side effects. Many...
Hang on Lynn. Please let one of the nurses on your floor know how you are feeling. Last time I was in the hospital, the nurse was quickly able to get me something to relieve the anxiety. I see that...
I switched to a natural toothpaste that does not contain sodium laryl sulfate and use generic oral anesthetic gel that contains benzocaine. Swishing with salt water ir mouth wash has helped as well....