Can you share what med that was that helped you?
I found what you have written interesting. I am a 28 year old male. I have been suffering from Crohn's for about 2 years . They tried every oral medicine out there nothing worked. Asacol is the only one I can name now. Then they brought the big dogs out and I started Remecade. The first go about I had no reaction. The second time though my blood pressure sky rocketed, as well as my heart rate. That was the last time for Remecade. After that I ended up being so bad I had emergency surgery for an abscess on my colon. I had reconstructive bowel surgery and had to wear an ileostomy bag for six months. The reversal went well. Felt good for a few months. then another flare up. Now I am starting Cimzia. I just took my first injection yesterday. I really want to change my entire diet. I have been reading a lot about SCD. Simple Carbohydrate diet. Should I keep taking the medication and change my diet at the same time? . I am really confused. just wanted some advice . thank you
I feel so bad for you. I suffer with ulcerative Colitis for most of my life. I am 53 now and some times are better than others. I have flare ups and sometimes long remissions. I take asacol HD 3x day and enticort. It doesn't help a lot when the flare ups are at their worst. Don't ever give up although I do feel that way at times. That's when I realize the disease has taken control. It is up to us to take control and continue with life. I have 2 boys ages 12 and 15,along with 2 foster boys ages 4 and 7. They all need me and I need to be there for them. Medical technology has come so far and even there is no cure yet for our disease I keep the hope. It has been a while since your post and I hope you are doing better as I write this. To all of us suffering, PLEASE never give up. It will get better!
i also only experience such terible lower back pain just before a flare up, usually a terribly immobilizing cramping session. sometimes it has a cold feeling pressure, almost like the coldness associated with numbing, but it isnt numb at all, and has a stiff, sore feeling. The back pain almost makes me naucious... the crohn's cycle!
does anyone else experience this?
i am 18 and was diagnosed at 16. ive had symptoms since i was a very young child.
i also only experience such terrible lower back pain just before a flare up, usually a terribly immobilizing cramping session. sometimes it has a cold feeling pressure, almost like the coldness associated with numbing, but it isnt numb at all, and has a stiff, sore feeling. The back pain almost makes me naucious... the crohn's cycle!
does anyone else experience this?
i am 18 and was diagnosed at 16. ive had symptoms since i was a very young child.
Like another poster, I completely changed my diet & lifestyle. It has literally transformed me. Imuran, prednisone, humira, acsacol... Been on all of them. They only suppress the immune system & mask the problem, not the root of the problem: the SAD, toxins, pesticides, etc. poisoning our bodies for yeas. Caron's is not a disease, it is a symptom of poor health via poor nutritious and toxins over time. You need to clean up the body to get well and stay well. I now eat all organic ( even when I cheat and have a cookie ( rare) it's organic) cut out sugar (most important), dairy, gluten, and processed foods. Am off SAD (standard American diet) and onto a paleo (anti-candida/anti-inflammatory) diet. THE RIGHT FOOD IS MEDICINE. So are the right fats (virgin cold-pressed coco it oil, cod, fish, primrose, flax oils) and ACV ( apple cider vinegar). google all. Also google Edgar Casey. He knew this 100 years ago. Great resource: www.healingnaturallybybee.com, and don't forget prayer. There is great power in prayer. God bless you all.
Hello, I was just diagnosed with Crohn's. They just put me on Pentasa 8 pills aday of 500mg each. Wow@@ The pain has not stopped, but hoping it will work. I do take Vicadon only when the pain causes me to cry and I can't move or sit or lie down, and sometimes it doesn't work. I have had MRI's to make sure it wasn't something else. Yes, all this pain comes from having Crohn's. I hope someday they will find something that would not kill of something else helping Crohn's. Also when things become so bad, I take a sleeping pill and muscle relaxer, that helps. It has change my life from this active, sport driven love to a person I do not know.
I am so sorry to read about everyone's pain.
My sister in law was recently diagnosed with crohn's disease and she is having a lot of back pain.
I was hoping to find some advice for her, but apparently you folks are just as desperate as she is.
I wish you all relief from your pain.
Hi Christine, my bf is in the same situation, can i ask what medication your rheumatologist prescribed? thanks for sharing. Stephanie
Anyone out there changed their diet? It worked wonders for me. I went to an herbalist who had me change my diet and also had me do a colon cleansing. I've been off of medication for over 6 years.
Has any doctor thought of Fibromyalgia?
Lyrica & Vitamin D3 seem to help me.
I'm 33 just diagnosed 6 months ago with Crohns.So they put me on buspar and ultram. Well it caused me to have seizures.Well the best part is had back surgery 10 years ago.Go to the hospital messed up several discs and have damaged nerves.Now I have bursitis in my hip,caused by Crohns.I'm on so many meds,and
I think this is my life to I die.Im saying this because I have no one to talk to that really understands me. Anyone that really knows Crohns please email me at ***@****
find another doc yr only hope
have crohns 30yrs but also sprue what do u want to know
have blood work to check for celiacs
The dr. said I didn't have Crohns but Ulcerative colitis, but i have been having the same pain you are describing. I already have been dealing with back pain for years, but you're right...this feels like child labor back pain. Happens all the time with me since I have not been in remission since it started in April. I thought I was going crazy for a while.
I have very bad back pain and I m going to my gasrto today, I was in remission for about 3 yr,after surgery but now its back and I have cramping and back pain, I just cant stand it anymore
Back pain prior to being diagnosed with ulcerative colitis. Doctor suspected it was colon related about 5 years before my diagnosis. Every few years I would have lower abdominal discomfort or lower back pain which was intermittent, until eventually experiencing the ulceration and inflammation of the colon which lead to my diagnosis. Meds seem to control symptoms thus far.
like the other posters suggested go see a Rhuematologist ASAP. I struggled with back pain for years with my Crohn's disease. I saw surgeons, chiropractors, pain docs, everything and nothing worked. Went to a Rhuematologist she immediately diagnossed me with an arthritis that was common in Crohn's patients and put me on medication that worked immediately and now I am pain free in my back. Luckily my uncle is a doctor and he is the one that suggested I see a Rhuematologist b/c I was considering having back surgery. Hope you feel better and hope this helps!
Christine
like the other posters suggested go see a Rhuematologist ASAP. I struggled with back pain for years with my Crohn's disease. I saw surgeons, chiropractors, pain docs, everything and nothing worked. Went to a Rhuematologist she immediately diagnossed me with an arthritis that was common in Crohn's patients and put me on medication that worked immediately and now I am pain free in my back. Luckily my uncle is a doctor and he is the one that suggested I see a Rhuematologist b/c I was considering having back surgery. Hope you feel better and hope this helps!
Christine
Hi I have been dx with crohn's for 9 yr. but Dr. have think i have had it since i was 15 yr now i am 30yr. Well anyways i do have back pain very bad a times (a long with all the other things that come along with this horrible disease).I have done some research on this what i have found It could be caused by inflammation of sacroiliac joint it in your back it called sacroiliitis or inflammation what the cause of other joints in that area. 2nd muscle tension due to bowel inflammation 3rd osteoporosis due to poor absorption.Every place i looked said same thing , it maters what the cause is depends on treatment either meds message chiropractor hot bath.Hope this helps i feel your pain Good luck hope it get better
Quick suggestion - Yes I suffer from Crohn's however i've just had the best blood results I've ever had. No I'm not in remission and yes I still suffer (particularly as I have already lost 5% of my spine mobility due to a previous accident). However the only thing I've done different since my last blood test is I've been eating a couple of handfuls of pepitas (pumpkin seeds - unsalted / unflavoured - just "roasted") a day - they have helped to reduce the inflammation - worth a try.....mind you - my back is killing me again at present and I'll do stretches etc to get it moving - i refuse to let this disease win.
Be aware that there are some types of arthritis that can go along with inflammatory bowel disease. Insiste on being seen by a rheumatologist and having a complete blood work up and exrays. There are treatments, other pain relief meds, and chiropractor or massage can help but it is important that the cause is treated, not just the symptoms.