Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
These last few weeks have been trying ones for me. I find myself with horrible pain under my right rib. My kidney has also been hurting. Not to mention that I have had diarrhea and throwing up for over two months. But now I throw up after every meal. I keep calling my specialists and they haven't had any appointments to see me till Feb. After two visits to the ER they found I have a kidney infection and suspect that I have gallbladder stones. Usually i would have gotten my Remicade infusion on Friday but it got pushed back. My immune system is compromised so surgery for the stones is out. Now to top it off I got a cold from my roommate. I already suffer from horrible joint pain. It gets so bad that I have to use a wheelchair sometimes. I am so dizzy and the nausea is unbearable. They told me that my liver and pancreatic levels were also off.
I try to be brave. But i am feeling scared lately. Scared that the Remicade isn't working. (even though I know there are other choices out there because i want them to be the options for later) Scared that I am getting even more complications from the UC. I knew they would be coming but I figured it would be later down the line. I'm still young I gotta stretch what i have left of my body down the line. I try so hard to take good care of myself and lead a "normal" life. (which isnt at all but you know as close as possible) The only thing I haven't been able to do is lose the Prednisone weight.
I already need help bathing, getting dressed. I can't do simple things like change the sheets without suffering for hours after. I feel so unattractive and I'm always scared I smell. (everyone swears i dont)
So I guess I am done venting for now.
I try to be brave. But i am feeling scared lately. Scared that the Remicade isn't working. (even though I know there are other choices out there because i want them to be the options for later) Scared that I am getting even more complications from the UC. I knew they would be coming but I figured it would be later down the line. I'm still young I gotta stretch what i have left of my body down the line. I try so hard to take good care of myself and lead a "normal" life. (which isnt at all but you know as close as possible) The only thing I haven't been able to do is lose the Prednisone weight.
I already need help bathing, getting dressed. I can't do simple things like change the sheets without suffering for hours after. I feel so unattractive and I'm always scared I smell. (everyone swears i dont)
So I guess I am done venting for now.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I'm sorry you're going through a rough time. Did they diagnose the gallbladder stones via an ultrasound or were they guessing? I had my gallbladder out in 2011. I was so sick, nausea, back pain, rib pain, abdominal pain, pain that brought me to my knees. I didn't have stones; rather, my gallbladder stopped functioning and was diseased. Did a doctor tell you that you can't have surgery due to your immune system?
Also, you might want to see a therapist. I've done it myself and it was really helpful to me in terms of coping and just talking stuff out with someone. Feeling sick and in pain all the time alters how you think and feel and so it's important to take care of your emotional health as well.
Good luck with everything, God bless!
i am not sure about seeing a counselor because i get free health care so i am not sure it is covered.
my infusion got pushed back again.
I hope that in February, you find the help that you need....I am looking around myself for another doctor..I like my present dr, but he isn't helping me.
I really feel for you. You've received some really good suggestions here. You can't control your flares, You don't have control over kidney/gallbladder issues. Though, I would suggest you not allow your Remicade infusions to be pushed back...it's important to have them on time. Late infusions generally result in not feeling well. At least I've never heard of anyone who felt better by having their infusion delayed.
My "big" suggestion for you is: Don't allow yourself to stay in the "I feel yucky" state too long. Have a nice soak in the tub with bubbles and bath salts. Get a facial and/or mani-pedi. A little self-pampering will go a long way toward lifting your spirits.
I hope you are feeling better.
What I learned from the doctor at the cancer center was that the remicade is a steroid sparing device and that it only really alleviates symptoms, that your immune system continues to attack the colon even when you are on it.
I found relief from the gallstones by drinking 100% natural apple juice (I prefer Simply Apple). Eventually, however, I dissolved the stones and after a fatty meal, I ended up in the ER and had it out.
I like to take Collostrum for colds because it has a lot of natural antibodies to bad bacteria and viruses.
Feel free to read my journal because I go into more detail about the gallbladder stuff. I really do hope you feel better soon.
One thing you mentioned was not being sure if counseling would be covered under what kind of plan you have. You won't know unless you ask. Gotta get really proactive about your physical and mental health. It's important to take charge as much as you can. Sometime it's overwhelming to do when you are so worn out and tired, but no one is going to look out for you more than you.
I had to wait 6 months for my surgery, and during that time i avoided attacks by eating a completely fat free diet.
the surgery, for me, was the easiest thing. I went in that morning, had the surgery around 10am, was home by 4, and ate a normal supper with my family that night. laproscopic procedure, took less than a half hour, i recovered from the general anesthetic well, and had no pain after. Just 4 tiny holes in my abdomen, one dissolvable stitch in each. Not everyone has it that easy. I am so glad i had the surgery, not it only cuz it stopped the attacks, but tests afterward found that the gall bladder tissue was precancerous, so I dodged a bullet there too.