Crohns

[angie_xo]

I've been diagnosed with crohn's disease for about two years now. I was vomiting for 5 months straight, needed to go to the emergenecy room every two days to receive an iv cause i could not eat or hold down water. I had a colonoscopy done and my results came back that i had a thickening to my ileum wall. The drs started me immediately on remicade and entocort, I felt as nothing was working. After months of complaining, the doctors did an capsle egd which showed supposably "nothing." I suffered for months in pain, using the bathroom constantly, and vomiting. I finally went to a different hospital and had recieved another colonoscopy and had all my past tests sent over to my new GI. He came back and told me i had Crohns disease and IBS. Ive been on imuran and recently started humira but am having problems with my lower abdomen. my abdomen is distended and hard like a rock, it hurts to eat, use the bathroom, pretty much hurts doing anything. I landed up in the ER and had a CT done which showed my intestine was inflamed (not in my ileum). My stomach is in so much pain!!! I just want it removed cause i don't see these medications working. what do i do?

[Leaha8296]

Im so sorry your going through thar. Sounds like you are definitely having a flare. I was diagnosed ten years ago when I was 16 and it was not an easy road. You have to give some of the medications a lot of time. Im on Imuran right now and I know my gastro told me it takes at least three months to be completely in your system and working. I had a bad flare this past September and I have been on prednisone for months! It completely *****. Im being tapered off right now and the withdrawal symptoms are the worst. Have you thought about doing humira? Ive been on it for years and it kept me in remission for years. Just hang in there it WILL get better.

[lulu747]

Good advice above.  I was diagnosed with Crohn's in 2006 (located in my terminal illeum) and tried all the meds, some which almost killed me (severe allergy to Remicade which caused serum sickness) My abdomen was so swollen I looked 9 months pregnant and spent 3 weeks in hospital being fed intraveneously through my heart.  The only med that worked for me was prednisone.  High dose, short period of time, quick wean.  I did an elimination diet and found that dairy and fatty foods were no nos.  I also realized that stress and lack of sleep were  number one contributors so I spent a good 3 years practicing yoga and meditation. I had to change my entire life style and it has served me well.  I have had one flare in 4 years which is AWESOME.  I have serious endometriosis which is a whole other issue but find with diet, exercise, and a positive attitude and good stress management that my Crohn's is controllable.  Also, a high quality probiotic is a must in my opinion.
I hope you find some relief, and peace.
Lu

[Megadodger]

Hey there, I hope things have improved since you posted this.

Through my journey it took ten year for things to get better for me. I had severe inflammation of my large intestine and I also had IBS. Did you know that IBS is mostly triggered by food and stress? So on that note, take a deep breath, and relax. This is a hard subject to relax about, but there's alternatives, I promise!
Remicade did not work for me, I was allergic to it. Have you tried Humira? Humira is done by yourself usually and it didn't help me like they hoped it would, but it definitely helped me. I found I was still in the washroom a lot, but it was less often. My joint pain was gone and I wasn't as moody.
Entocort is used specifically for inflammation of the small intestine. I learned this after being on it for over a year when I switched GI doctors.

Next, have you thought of that it will be like to live without a colon with crohn's disease? This is something you need to gather information about. I was 19 when I was actually forced into surgery after my colon ruptured. We didn't know whether it was crohn's or colitis because it was so severe so I have to make a decision based on what I wanted. I told my surgeon that I want to be normal again if its possible; if it looks like crohn's in there, don't torture me. Just tell me when I wake up what you had to do. If it's colitis I would really like the chance for an ileostomy reversal. So I currently have an ileostomy that is reversible, but my rectum is unhappy. I'm having to continue treatment and soon I can find out whether a reversal is possible.

Last, how long has your large intestine been affected? Can you pinpoint when it started? I ask this because The doctors told me my colon as long gone for the majority of time I tried to fight the condition. There was no way I could have helped it.. But, I found a few natural remedies that did help! And it gave me an extra 2 years (was still very sick, but I did feel better and I wasn't ready for surgery).
Curcumin is one, boswellia is another, wobenzym is really good. Aloe vera water/juice is very comforting. If you haven't changed your diet, I would suggest you elliminate red meat and gluten for sure. Milk and eggs are often a problem too, but I find them less of a problem. Sugar actually causes inflammation too! That was a surprise to me!

In the end, if your doctor isn't giving you the answers you want, find another doctor. You don't owe this doctor your life.. The doctor is there to save your life. So talk to your doctor, gather information about the possible surgeries, relax, and then carry on.

[silverfox67]

     i am so sorry that you are going through so much.
  My youngest daughter was just diagnosed with Crohns and I am doing research to find something; anything that can help her.
    So far I've found that some people get relief with Aloe Vera juice.  It's supposed to be soothing and helps with inflammation.  
      My daughter is a bit stubborn, and refused to try it -  but perhaps you can try it and let me know if it works.
     She might try it if others say it helps.  I don't have it, so I can't say.

Wishing you the best.

[coughting]

Just make sure if you have surgery you go to a bariatric surgeon. And ask how many of these surgeries he has done.  Ask if he does laproscopic.  If the answer is no, find another.  They may not be able o do laproscopic but you want a surgeon who will at least try.