Crohn's Disease & Ulcerative Colitis Support Group

Honey, I am so sorry to hear about all of this that you are going through. I was diagnosed in November with Crohn's and I hear every time I go in that I have a "special" case. I have been on pain meds since. 10mg OXY every 4 hrs! If I were you, I would talk to my doctor about the pain, and tell him that you need something for it. If you are like me, you have to function, take care of kids, etc. And yes, my husband has a comment that he likes to make when I am being a #@!$%. He says, "Oh, Jaclyn's pullin' her 'sick card'" He just does not know how to be sensitive to my illness when it makes me so mean and mad! So, this is his way of saying that he is tired of me being sick and he thinks I am faking it or exagerating it. What a butt, huh? I do have news though. If UC is like Crohn's, well, like MY Crohn's, there is no getting back to a normal happy self. I may have just surrendered, but Crohn's has ruined my life. It is something that you are going to have to learn to deal with, manage, and live with! If you don't take care of you, then who will, right? Good, luck and let me know if you want to talk anytime!
Jaclyn

You're right, it sounds more like Crohn's. UC only effects the large intestine. If you have issues with your small intestine, that could be Crohn's. You may want a second opinion. A lot of us have gone through many docs, tests, and heartache for years before being properly diagnosed. Hang in there, it can get better! There is great support and tons of info on this site.

Hello, I'm sorry to hear about your recent diagnosis. Welcome to the Crohn's/UC club. This is always my advice to everyone.


First, you have to take control over the UC. When we are first diagnosed, we tend to rely on the doctor to give us info and make us feel better. My first doctor diagnosed me, but never told me anything about the disease itself. Get on the internet and do your research, read other people's profiles and posts here to see what different experiences are like. Ask us questions and try to get a list of questions you want to ask your doc. The more information that you have about UC itself and the drugs used to treat it, the more empowered you will feel. That helpless feeling will lessen.


As far as the pain and bad BMs, I thank the Lord that I don't have the pain that most people tend to have. There is some pain, but not the constant pain that some people seem to be in--so I'm not any good for that aspect. HOWEVER, when I am flaring, I am constantly bleeding. My blood never really stopped. What I recommend you do, if you haven't already, is go to a strict liquid diet. Nothing but clear liquids for a few days. The liquid diet may make you feel better. Then you can slowly begin to eat food again--but not just jump into it. Eat things that are bland and easy to digest. I'm sorry I can't give you a food list, but everyone literally can eat different foods and I can't really tell you what will make you sick. Unfortunately, that is a trial and error process.


Also, if you are still in pain and sick, call you doctor and tell him. I have called my doc in the wee hours of the morning because I have felt so bad. Sometimes you have to be aggressive when you are feeling really bad and you need help getting your symptoms to subside.


One last thing, there is no overnight fix. Don't expect a new med (with the exception of the evil, evil prednison) to fix you immediately. It seems that most of them take a couple of months to kick in.


Good Luck,


~Sugah~

P.S. The UC road is a long one. It may be best to sick with your husband and really explain that there is no quick fix and that you are going to need his support now more than ever. The wife he had before is going to be gone for a while and you may not be as active with him as you were before. You may even want to have your doctor explain it to have a more powerful impact. There is no overnight cure for this and I would hate for you to have pressure from family to bounce back quickly, when that is not a possibility.

my first suggestion is a new GI =/
For one.. if you have "UC" in your small intestine It's not just UC.. its Crohn's. Ulcerative colitis is only in the colon. But Crohn's is any where from you lips to your hips pretty much.
Have you been on any other meds besides Liadla?? Also how long have you been on it? Some meds take at least a month to start working... Hmmm. Have they tried prednisone or anything? Now i know pred is the most hated medicine out there, but you have to have some way to bring down the inflammation level in your intestines (pain meds alone won't do that.) Even though prednisone gives a lot of side effects, for a lot of people it really does help them start to feel better and lead a normal life again. And its something to try. The prednisone will supress the inflammation and hopefully take your pain away after a few days. I have been perscribed pain pills by my family doctor, and they do help with pain - buuut as i said before, you need to get the inflammation under control.
There are many many meds out there. And it takes awhile sometimes to get the right combination of meds that help your pain level and inflammation.
Best of luck to you. Look into getting a second opinion on your diagnosis and such.. UC sounds a littttle fishy to me :S

Also.. pain wise.. (i forgot to add.) Try a liquid diet for a few days to get your GI tract to calm down. Just stick to chicken broth, jello, and such for 1 or 2 days. Then start introducing very very soft foods (like noodles and such) into your diet. Sometimes that can help with the pain level. Heating pads help, and sometimes warm baths help as well.

I have crohns colitis and its all in my colon, I have had it for 23 years and it has never spread to the small intestine. I just got out of the hospital and have to go back in a few days for a colonoscopy. I hate staying in the hospital! I wish you luck and hope you find a way to cope, its not easy but you can do it...

"sick of being sick"
Yep, that's me too. I've was diagnosed in May 07, with lots of other symptoms that had gone on for about 7 years before that.
There are good days and bad days, sometimes good weeks and bad weeks, but things never go back to 'normal'. You have to find a new kind of 'normal', and educating yourself and your family is a really important step in reorganising your life and accommodating this rotten illness. It's not an easy path, but you need to look after yourself as best you can, and get your family's support. This is not like a flu that's gonna go away anytime soon. It's a life-changing illness that, at its worst, can be debilitating and dangerous. Your family need to understand that too.

I truly hope that you find the drugs help you and put you into remission. I found some good books on Crohn's / UC just by surfing Amazon.com and they've really helped me understand just what's going on.

I've found DS a great place for information too and also a good place to vent! You'll find the support you need here.
Stay strong. You're not alone. *hugs*

I was diagnosed in June with UC. I was in the hospital for 3 weeks and very sick. I am very lucky that I have a team of specilist and have handled it aggressively when needed. My understanding of UC is it only effects the large intestines so I to would recommend a 2nd opinion. My first colonospy the Dr. was a flake and sent me home and I was in the ER 4 times. The one thing to keep an eye on is the bleeding it can cause you to be anemic and make your symptoms worse. I am fighting it and have had to have a blood transfusion. I started going down hill in April and today I am still really struggling so there is no quick fix. Pain - I am over the stomach being painful but the high doses of steriods cause me to have major headaches which in turn I take pain meds. And this effects your entire life - family and friends. I know that I am struggling with my relationships some of it is me and some of it is them and it makes it hard. I to am waiting for my life to be normal - whatever normal is.

Guys, Please read "The Makers Diet" by Jourdain Rubin. It has a lot of good info and he is now healed of Crohn's (and many other things), He started Garden of Life - They have a lot of great products that I use.(perfect food,. A liquid diet is good but you have to learn to start putting the right things in for you r body to build up your strength and you immune system.

I am sorry u r having so many health problems. Everyone gave u good advice because the drs. usually don't give us the info. It is funny that my husband would be OK if I were sick for 1 maybe 2 days then I better b up and moving. So I could care for r 3 daughters, him and the house. But now since he has been sick for the past 4 yrs. he is very different. He is too sick to do much so when I have a flair he doesn't expect me to do anything. However, then there is 2 sick people now. Anyway food and stress makes mine worse. Everyone is right different foods act different with each 1 of us. But I think fried foods, caffeine and choc. bother most of us. I wish u luck and do a journal of what works for u. What foods u can eat. At first just eating a cracker or cookie sent me to the er/hospital. I was in the hospital 3 times but er 6 more times. The pain was so terrible, nausea , weak and br visits too. I think 1 thing about being diagnosed is now u know what u r dealing with. U can research and/or ask ? to help with your health problems. Good luck.