Hello...

Hello Everyone! I am Christina and I am 26 and have had Crohns disease since I am 17. I didn't know I had it until I was 18 and once they figured it out it has been horrible. I have had 12 surgeries and have 20 inches of my small intestines removed. I am in the midst of a very severe flare up with GI bleeding which happens to me a lot. A couple of weeks ago I was in the hosptial and my GI stopped the bleeding for now but I am in agony 24 hours a day and can't live my life or move because of the debilitating pain I am in constantly. Day by day it is getting harder and harder to suffer like this and all I do is cry and get mad because I feel like I am stuck waiting on my doctors to figure something out but I am suffering everyday. They don't want to operate again but they are waiting for me to bleed again so they check my blood every two days and just want me to tough the rest of this out. I just don't know what to do anymore or how to live like this everyday day in and day out. I don't want to eat and I am constantly nauseus and weak. I am on prednisone and they are trying to get me on humira but having problems with that. If anyone has any ideas or remedies on what to do during a flare this bad I would truly appreciate the advice and input because I am stumped. Thank you for reading this

Sincerely, Christina

By christina26
Posted September 2, 2009 at 11:35 am
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Yes I have been scoped out and they stopped the bleed by cortirizing it but day by day it gets harder to function and hang in. I just want relief and to be pain free. Thank you for reading. Enjoy your day

By coachphyllis
Posted September 2, 2009 at 1:46 pm
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Christina, I am so sorry about how much you are suffering. What is the hold up with Humira? My 19-year-old son suffered greatly last fall--multiple surgeries, lost 1/3 of his body weight in 3 months, couldn't eat--and then he started Remicade. Within days he started feeling better. I know everyone's situation is different. This is just my 2 cents.

By GI_dysmotility
Posted September 2, 2009 at 3:09 pm
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Christina,

I'm familiar with the agony and frustruation of IBD along with no answer to the problem. If they're having problems with the insurance, can they shoot for Remicade? I thought they had to try everything else prior to Humira.

Becky

By christina26
Posted September 2, 2009 at 11:37 pm
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The reason I can't get the humira in order is because of the insurance issues and ive tried finding coverage through a protection plan but have not recieved the information from them yet in the mail so im still waiting on that to come. It just gets so overwhelming living this agony everyday and not knowing how to cope with it. I am calling my GI tommorow and asking to speak with him because I can't handle this suffering while waiting for the humira stuff to get in order. I just want to be pain free and get good sleep and not be up all night crying. I have never experienced a flare up this bad that i can recall because they have usually happened after having a a few surgeries. I truly appreciate all your input and glad I found this site to vent my frustrations and struggles. hope you all are doing well and have a fabolous day!

By nanascorner
Posted September 3, 2009 at 8:57 am
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Christiana

Let me tell you a little about my own battle with CD. It began shortly after I was born 54 years ago. I was 42 before I got an actual diagnoses beyond food allergies, and hypochondria . I have one of the rarest types of CD. Gastroduodenal Crohn’s disease , in other words CD of the stomach and upper GI track. Because of this disease , I developed Gastroparesis, ( half my stomach is paralyzed) due to the nerve damage that it has caused. Because of battling to different issue with my stomach and upper GI, even though they are inner connected, medicate treatment has been impossible to obtained do to the complications that each disease . I have had to learn to deal with each issue separate and with wisdom, for self-preservation. Beginning with coming to understand who the intestinal system work, and how to insure that it stays as healthy as possible. My CD has been in remission for two years, and my GP has been under control for over a year. I have a website dedicated to intestinal health….http://nanasworksheets.com/grace.html
Check it out and see if some of the ideas will help you deal with the problems you are dealing with

Big Hug Barbara

By soccerdad68
Posted September 7, 2009 at 7:20 pm
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Christina

I hear and feel your pain. I was there just a month ago going through the worst flare since I was diagnosed with UC 7 years ago. I felt I was closing in on the end since my GI was prescribing meds and nothing was working. After a colonoscopy he told me I had to get on Remicade now or risk being hospitalized, surgery or even death if I didn't act on his suggestion. He went so far as to telling me he would release me if I didn't start taking the Remicade. I wanted a 2nd opinion since Remicade comes with some serious side effects and possibilities of getting terminal cancer. He gave me the number to the chief gastro doctor at Mt. Sinai. He went over with me all my options including the Remicade. He suggested Cimzia, as it's only 2 injections every 2 weeks for the first round and then once every 28 days.
Any way, it's been a little over a month since I started Cimzia and I'm 99.9% back to normal. It's been a miracle drug for me with no side effects at this point. The healing started immediately after the first injection and I'm happy to say I'm back to living a normal life. All the pain and nonsense that goes along with UC has vanished.
See if Cimzia would be an option for you. I know every one reacts differently but if it works your that much closer to happiness. Hang in there.

Wishing you a quick recovery!

By Piperdoodle
Posted September 22, 2009 at 3:17 pm
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It is so sad that most of these drugs we have to take for CD have serious side effects. The drugs do work, for the most part.

I initially refused prednisone when I was first diagnosed. After two transfusions they finally gave me a colonoscopy and figured out I had CD. I started on Asacol, which worked for a while.

The doctors also threatened me about taking what they wanted. I even had nurses telling me to do what the doctor said. You are still in charge, not your doctor. Refuse what you want and find another doctor. I did, and I haven't had a bad bleed for a while.

I am now on Imuran. It potentially has a bad side effect in that it can produce lymphoma. I just get tested every three months.

I finally took the prednisone, I had refused for so many years, for sores in my mouth and now joint pain. That too helps. I just take a large does of calcium, magnesium and D3 to prevent bone loss, which is a side effect of prednisone.

Good luck, Christina. Don't be afraid to challenge your doctors. You may have to search until you find the right one for you. They are not Gods.

By l8ebug
Posted September 27, 2009 at 6:49 pm
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You might be interested in learning about my story regarding Isagenix and my battle with Crohn's Disease...
I have suffered with this disease for 27 years, enduring chronic fatigue due to malabsorption, several explosive and rancid bowel movements daily, severe stomach cramps, and "stringing" of my intestines due to scar tissue build-up which required the need for two intestinal resections to remove about two feet of my small intestine (illium). Over the years I've used anti-inflammation drugs such as Sulfasalazine and Pentasa, steroid drugs like Prednisone, and immune-system suppressors such as Imuran, and Mercaptopurine (used as a chemotherapy drug!), antibiotics, antidepressants, and monthly B12 shots. I have had to pay careful attention to the foods that I eat or suffer the consequences...all this in a desperate attempt to manage this beastly condition!

This summer a friend from work gave me an Isagenix pamphlet and shared a few health benefits of the program with me. I shared the pamphlet with my husband. We were both interested in the weight loss and nutritional benefits, so my husband signed up as an associate to save money on the products, and we started with the Shake and Cleanse program. I noticed immediate results in my health and sense of well-being! The following month, we decided to use the 30 day program and added additional products to boost the nutritional benefits. Over this short period of time, I have experienced AMAZING results and have experienced benefits I never imagined were possible for me!! My Crohn's symptoms have disappeared in an incredibly short amount of time! I feel energized, and am experiencing bowel movements without the nasty smell and gaseous pressure!

I have since begun researching the ingredients and benefits of each ingredient to learn for myself WHY my body is responding in such a positive way to these products...the research shows that the natural herbal ingredients in the Isagenix products are designed to remove toxins, heal cellular damage, calm and soothe the digestive system, utilyze enzymes to allow the body to break down carbohydrates, protiens, and fats more efficiently (Crohn's patients have higher levels of a protein produced by the immune system called Tumor Necrosis Factor (TNF)), reduce inflammation, increase nutrient absorbtion, build energy, and reduce stress! The antigens or toxic elements from the environment are removed and the adaptogens in the Isagenix products create a safe environment for optimal digestive health. My body is more balanced and I believe my immune system is relearning how to function appropriately; no longer having to attack healthy bacteria, food, and other substances that are viewed as invaders. The drugs used to treat Crohn's masked the symptoms, but Isagenix products are treating the CAUSE. Isagenix seems to have given MY body what it needs to naturally heal itself, and the ability to absorb the superior Isagenix nutrient-rich superfoods! My digestive tract feels like it is in balance, the way God intended it to be!

For more information about Isagenix, go to http://barbaramckinney.isagenix.com or send me a message with any additional questions.

By christina26
Posted November 7, 2009 at 10:39 am
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Hello Everyone! Sorry for the delayed response. I spent the month of september and pretty much october in and out of the hospital. I had surgery in September and two days later they had to operate again because my intestines didn't link back together and it caused an infection. Eventhough I am home I still feel awful. When they went back in for the second time they put on an ostomy bag which I am really upset about and having a hard time dealing with having. For some reason I can't stop belching and it is very painful so I had to get an UGI done last week and they are saying it is due to the fact that I am swallowing to much air from anxiety. It is very painful and I am absolutely miserable and uncomfortable and in pain all the time. I have no appetite or not really in the mood to eat. I went into the hospital about a month ago now for the burping problem and they just stuck a tube in and said i am full of air. I just want to feel good and wake up energized and wanting to start my day but it is the total opposite. I wake up exhausted and in pain and just miserable. Has anyone ever dealt with this constant belching and stomach filling up with air and if so how did you handle it? Also, on my bloodwork my levels for pancreatitits are always high and if that could be causing some of these symptoms as well ....Thank you for all your input and hope your doing well...

By bluangl77
Posted November 22, 2009 at 9:16 pm
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Hello. Try Humira Protection Program at 1800-364-4767. They did everything over the phone so I did not have to wait for the card to come in the mail. Then all I had to do was contact my insurance with the ID #, group # and BIN # and my doc faxed over the prescription to my insurance. Within 3 days I had the starter kit. There is no reason why you should have to wait for stupid numbers in the mail when they could register you over the phone. I hope this helps you too. Good Luck and hang in there. I take the injections weekly. It has only been 2 months now. I took them last year for 4 months but had to stop because I maxed out on my insurance. I did not have the same assistance program as I have now. Best regards and I really hope it works for you. I too have been through the ringer and know what it feels like. Hugs, Bluangl77

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