Newly diagnosed with Crohns/Colitis

Annkj1975,
I can remember when I was first diagnosed with this disease and there were so many questions but no one who could answer them from experience. The doctors just give you some meds, pamphlets, and maybe a little advice before they send you out the door to see you in a month or couple months. It is so frustrating and you can feel like you are all alone. You feel that people care but never truly understand and you may even be doubting yourself due to the pain and sickness. All of us have been there and we are here to answer any questions. We are here when you need to vent, to cry, to yell, and to laugh with.
To answer your question about a flare, a flare is when your disease kicks it up a notch and could be urgent bathroom visits, bleeding, nausea, PAIN, and arthritis. It is so different for everyone but it basically means that you are having a peak of symptoms and it is really affecting you life negatively. The main thing that you need to remember is that you are your own strongest advocate and need to fight for your right to feel good. If your medication is not working, CALL YOUR DOCTOR and keep calling until you find something that works. Sometimes things do take time so have so patience, but don't just take the nothing we can do answer that some medical professionals give. You deserve the right to be out of pain and if ultram is not working see if they can change that. Ususally your G.I. will not help with the pain medication and you will need to see you primary care physican for that. Let your G.I. know that you want both of your doctors to work together. Also something that you should purchase or make in the mean time is a heating pad and a microwaveable bean or rice bag. The heat is amazing at helping with the abdominal and back pain and I have one on me constantly. Again, stay positive and do not hesitate to ask questions here because there is vast wealth of knowledge and experience among actual crohnies who will be supportive and blunt.

Also I was wondering if anybody else ever has had liver problems?? I have a 10 centimeter liver cyst on the lower left lobe, that required surgery when I was 4 months pregnant in September of 2008, they could not take the cyst out as all of my blood vessels etc are within that cyst, so they took part of my intestine and hooked it to my liver so my liver continuously drains the bile, I really wonder if this had anything to do with the Crohn's disease or if this is just a coincidence....and of course I worry now with having Crohn's if it is really safe for this bile to be draining into my intestines...sometimes when I have a bm it is nothing but BRIGHT yellow...and makes my insides hurt so bad, like my intestines are being ripped apart inside me.

Hi Annkj1975 and welcome to the best Crohns forum out there. I totally am in agreement with the above. When first diagnosed it is usually the hardest time for us because thru trial and error we have to find which med works best for us and what diet works best for us. To add to what Zanne said, I would like to suggest maybe you start keeping a food diary of which foods agree with you and those that don't. I follow a modified version of the low residue diet. While flaring, I will stick with a strict low residue diet, as I have found that works best for "me". You might want to google the diet to get some ideas. And I want to also reinterate that you should always be on some kind of maintainence med even once you are feeling better. The Crohns like to continue doing its damage on a microscopic level and can sometimes happen without you even knowing it. Thats what happened to me and I wound up having to have an emergency resection because of my lack of compliance with my maintainence meds. I have now been in remission for about 5 years and maintained solely on the sister med to Pentasa called Asacol. Good luck and keep us posted on how you are doing.

Hugs
Gail*Nanners*

Hi, sorry to hear you have this disease but, hey you have come to the right place for advise and support this has been my lifeline this past 18 months. just wanted to welcome you aboard and say hi! Bev x

Hi, I think I am new at this also. Have had rt lower quadrant pain for 1 1/2 years, exploratory lap in March 2010 with appendectomy that didn't go well (out patient turned in patient due to extreme pain). Then hospitalized 7 days later for global sepsis. Somehow through all this I have landed on the door step of a GI doc - who is grumpy to boot. He did IBD labs that were abnormal but biopsies and cultures negative. He started me on Entocort EC. I don't really know what any of this means other than reading all of your postings, have a sore gut and try not to eat too much as of the frequent bathroom runs seem to interfere with life. I am a 53 year old female who works full time and have a spouse and 4 kids. this is an OMG moment. Of course cry all the time and the doc only calls with half hearted interest without recommendations for anything other than this drug. Don't even really know how to take it and when to go back to see the grumpy GI. Ok, so it is getting funnier as I write this, in a sick kinda way.