My autoimmune disease

[rain]

Well, I was referred to this board for making friends and finding people in a similar situation so I do not feel alone. In a nutshell I was diagnosed with Crohn's Disease five years ago and have been in and out of all types of doctors and hospitals. They know me there due to being admitted so many times and staying for a week. So hoping to talk to some people with the same issues.

[ek2012]

I hope you find some support hun. I know your story and I keep praying for you! I am sure within time many will post to this thread so do not get discouraged or anything. Take care!

[betsky]

@rain
Hey sorry to read about your crohns. I've got ulcerative colitis so i guess we're like auto immune cousins. I have a few other issues but thats not your problems.
The best i can suggest is to ingest as many calories as possible when you can.
Do you have a port for TPN(parental nutrition)
Let me know if you have any questions the doctors haven't answered. I rely alot on holistic modalities for my u.c.
Betsky

[blink]

It has been a very hard ride for my family member. Even though the prednisone was a life saver at the time, the side effects have took its course.
We have gone from 80 mg daily to 10mg. The Dr. is trying a new med called Budesonide to take its place as soon as we have weened him off the preds.
He also takes Asacol and Nexium. Have you guys tried any of these ?
The pain and lack of energy is really hard on him.

[rain]

Thank you for sharing with me, I know this is for the rest of my life and my Crohn's is severe! I am losing my hair from all the treatments they keep giving me and now they are going to cut a decent size portion of my small intestine (b/c too severely damaged) out and I am very afraid of that and what happens afterwards.

[blink]

So sorry about your upcoming surgery. We have not got to that point yet. He has had all these symptoms for 3 years , but was only diagnosed last year .
Could I ask what treatments you are taking ? He is young and we are trying to get him healthy again. We have tried the glutton free diet and it really does not seem to help.

[betsky]

B

Thank you for sharing with me, I know this is for the rest of my life and my Crohn's is severe! I am losing my hair from all the treatments they keep giving me and now they are going to cut a decent size portion of my small intestine (b/c too severely damaged) out and I am very afraid of that and what happens afterwards.

@rain
hopefully after the surgery your symptoms will lessen.
bowel diseases run rampant in my paternal side of family.
Chrons, U.C.and most prevelant colon cancer.
I had an area of my lowed large intestine removed and resected (put back together, no bag) a few years ago.
the g.i.said it was like a corroded lead pipe.
Knock on wood (my head is wooden knocking)
I've had minimal attacks and problems since.
I also treat this disease homeopathcally, rather then the
drug cocktails the drs. Like to order.
last colonoscopy,no problems,polyps and in G.I.s words
pretty in pink
betsky

[msaok]

I am newly diagnosed with ulcers. They are not the kind caused by H Pylori, so antibiotics won't cure them. For now, I'm taking something called Pentasa.
This medicine costs an arm and a leg, but I was able to try it because the doc gave me free samples. She explained that the idea of this pill is to apply a steroid topically to the intestine, rather than taking prednisone and then experiencing the systemic side effects.
I feel better as far as pain goes, and I have been able to increase my diet since taking it, but I am having horrible heartburn even though I take Prilosec every day.
I had a biopsy 3 weeks ago which was negative for crohn's but the doctor said this does not rule it out completely and so more biopsies are probably in my future.
I have a follow up appointment this week. Still learning about this GI business, so I'll probably learn more reading you than vice versa.
I have a friend with Crohns who was so sick all the time. After her bowel resection and ostomy, she lives pretty comfortably. Knowing her makes me less jumpy about the whole thing.

[misstrepidation]

Well, I was referred to this board for making friends and finding people in a similar situation so I do not feel alone. In a nutshell I was diagnosed with Crohn's Disease five years ago and have been in and out of all types of doctors and hospitals. They know me there due to being admitted so many times and staying for a week. So hoping to talk to some people with the same issues.

@rain - Hello, I'm sorry to hear about your Chron's, it is a very difficult disease to deal with. Like @betsky , I have UC and I also have IBS, gastroparesis, gastritis, and GERD = AH!!! It sucks.

While our diseases are different they are still similar, besides all the drugs and medical procedures how is your diet? And exercise? I find myself really sluggish from meds and joint pain and I sleep poorly but even a little activity helps, like 30 minutes of sitting on the floor doing basic stretches. Wii yoga is actually a nice little game for light exercise.

I try to go for a lot of protein in my diet while keeping an eye on veggies/fiber so as not to make the colon work too hard, and fish is great! I try to get salmon at least once a week from a local Japanese restaurent along with miso, which is also pretty good for you. There is also something to be said about organic as well and stuff from Whole Foods tastes better and leaves me feeling better too.

As for pain both physical and mental, just be strong and try to do things that make you smile even little things. It's hard to go out or participate in extracurricular activities but going to a movie on a quiet day is nice, a little retail therapy. I like to buy little inexpensive things as treats. Recently I started playing around with my iPhone camera and all the apps it's fun to see how many pics of my cat I can take in one day, lol.

Also, while I know it still has a lot of unnecessary stigma, for the times when my pain and nausea are just unbearable, a little cannabis (and I mean a little, you do not need to get knackered) always alleviates it in RECORD time. Hands down cannabis is the one "drug" that has a 100% success rate in treating my pain, nausea, spasms, cramps, and it always keeps any additional bathroom attacks at bay.

[LolaBelle]

Hello, I have Crohn's Disease. I have been sick since I was twelve years old, alot of surgeries, and stays in ICU. I have a case that isn't textbook so I have a team of doctors that study me like a lab rat. I don't know if I could be any help or support, but feel free to pm or write on here. Sorry for you are dealing with, I can honestly say I understand. I won't tell you my story it still scares me!

[johndoe]

rain, i also understand where your coming from. i have been diagnosed with rhuematoid arthritus, ehlers danlos syndrome (i think they misdiagnosed me), its been around 10 years and now i feel im nearing the end. i have no insurance , disability denied me,...looks like its up to me to try and heal myself, if thats even possible.

i cant even go in public anymore due to my physical deterioration. ive got anxiety, agoraphobia....i just wanted to tell u to hang in there!

[rain]

Thank you all for sharing with me. Mine is pretty severe and we are on a difficult road but hopefully some to all of us will have success and less pain
Autoimmune's run rampant in my family, seems like a curse at times.

[Good Apollo]

@ everyone this is embarrassing for me but I will ask bcs I am scared to ask doc- I have a continually upset stomach, most of the time anyways. My mom has ulcerative colitis and I know one of the symptoms of that is having to go, emergency style... Sometimes I think I got that... Is there anything else to look for or for crohns? Know they're similar... I have had back, knee, shoulder problems since highschool which I attributed to weightlifting but docs never found anything besides my shoulder that was an issue... I have always left off doc questioneers they give you my stomach issues bcs I've been scared of bringing it up but I wonder now... Does crohns make everything hurt? I was not like out of shape, and have been in amazing shape low body fat big muscles etc but always had pain everywhere and upset stomach... Idk.

[ek2012]

Hi there, rain here is my sister and we have a common autoimmune. But, Crohn's is infamous for diarrhea and lots of pain. Could be ulcerative colitis, ulcers, gastritis, nothing serious at all, lactose intolerance or IBS. There are MANY things that are similar and can be misdiagnosed our family had EGD's and colonoscopies to determine ours. But considering ulcerative colitis is autoimmune and it is hereditary that may be it but need test to know and the above I said are best bet. Good luck and I hope this was helpful to you. Hopefully nothing serious (fingers-crossed).

[rain]

So sorry about your upcoming surgery. We have not got to that point yet. He has had all these symptoms for 3 years , but was only diagnosed last year .
Could I ask what treatments you are taking ? He is young and we are trying to get him healthy again. We have tried the glutton free diet and it really does not seem to help.

They treat me like a cancer patient almost I go get infusions every month sometimes every other week plus medications. They are trying to delay the surgery but it does not look to likely.

[betsky]

@nopizza
ek2012 pretty much summed up g.i.distress. I have
ul erative colitis and colon problems like this are hereditary. With u.c. ulcers, like open sores, develop along the large intestines mostly. Symptoms range from mild
gasy pain to bleeding rectally as you have a bowel movement and in between. The latter is a fulll blown attack
if the ulcers are higher up in the colon it can look like
"Coffe grounds ",thats older blood.
Your hesitation to mention any symptoms or history to your doctors or family is so verry different than myself.
it would bbe almost unheard of if someones digestive problems was not ddiscussed at Christmas dinner in
My family.
betsky