Advice from veteran Uc'ers to the newly diagnosed

I have had Colitis for 5 years. My neice, son and brother all have Chrons or Colitis but I never thought it would happen to me. I have always had "bathroom" issues, but thought it was just me. When I was diagnosed I was devastated. I was 55, 5 years into a new marriage and having moved to the United States, missing my kids, family and friends - basically my support system. I posted this document quite a while ago, but thought it might help someone who takes the time to read it. I have it printed out and read it as often as I need to. Admittedly, there are times I just need to feel sorry for myself and allow myself those hours or sometimes days to just let the feelings be. Most of the time, I am proud to say, I am able to pull myself up and get on with my life.

I hope someone gets some support from this Philosophy:

The Crossroads Philosophy

After many years of trying my best to cope with this debilitating, all-consuming disease, I have found that the difficulties of trying to deal with each issue concerning Colitis was bringing me to the brink of total frustration.

Over the last couple of weeks, I have sat down and tried to put into words, all the feelings I have been trying to cope with. I have come up with what I call the “The Crossroads Philosophy”. I kept picturing myself in that scene from the Tom Hanks movie, Cast Away. The scene at the end, where he is standing in the center of the 4 roads trying to decide which way to go. That is the way I was feeling almost every day. Once I formulated this philosophy and wrote it down, I found I had some kind of reference or something solid to hang onto. I hope you don’t find this post too long and boring and not pertaining to how you feel. It has gotten me through some tough days.

The Crossroads Philosophy

Those of us with Colitis have 4 roads that we must travel each and every day.

The Diet and Nutrition Road: We all know which foods trigger pain and discomfort and make us sick. It may take eating a particular food a few times before we realize that every time we eat it we get sick, but that can be done with the aid of a food diary or just remembering the last time we had a real “poopy” day. Now what do we do with that information? Are we strong enough to refrain from eating that food or do we decide to give in to our cravings and needs and eat it? I have to admit sometimes the cookie is stronger than my will. The simple truth is that some foods make us sick and some foods don’t. Face it, admit it, and accept it. I repeatedly have to remind myself that no food tastes great enough to make up for the pain afterwards. What we eat can make or break the day or even begin a flare up. What I have to come to terms with, is who is stronger – the food or me?

Recently I have discovered that I have a gluten and dairy intolerance and this has added to my daily pressures. Every meal is a major decision. Every social event has become stressful and work events involve major planning and research. At first this was very frustrating and I became very sad and feeling sorry for myself. Then I read and re-read this document and decided I could feel sorry for myself or take measures to make sure I have the proper foods to eat at all times, even if it means keeping a stash of “safe food” at work and in the car.

The Mindset Road: It’s not only what goes into our stomachs that determines the way we feel, but it is what is in our heads that can go a long way towards our health. It is accepted that stress exacerbates our disease. Ok, so now that we know this, how do we help to relieve that stress? Along with trying to maintain positive thoughts we need ways to make our days calmer. Along with visual thoughts, we can do a hobby, read, walk, sit quietly and meditate or just take a nap. Nothing helps a rough day like curling up under a heavy afghan and listening to a book on tape or music, or the rain. Whatever you determine is your best way to relax and listen to your feelings and look towards positive thoughts will help. Sure there are days that seem to get away from us and our frustrations overcome any relaxation techniques that we try, but picture yourself at that crossroad and try to walk down the mindset road of calm.

The Medication/Doctor Road: It’s tough to find a doctor who listens when you speak. It’s tougher to find a doctor who understands when you speak. Even tougher to find a doctor who doesn’t lump you in with every other UC patient. Where I live, there are basically two huge conglomerates of digestive doctors. If you see one in a group and don’t get along or trust that doctor, you are not allowed to transfer to another in the same group. Your doctor is your lifeline to medications and it is crucial to trust and believe in that person. Bottom line is; if you don’t like or trust your doctor, find another one. Lack of trust in the person who holds the means to your medical care causes stress. Remember stress is something we have to avoid at all costs. If your doctor suggests a road of care, follow that road. Don’t miss dosages and follow prescription directions. If something isn’t working, tell your doctor and insist that they come up with something that will work. Be an informed patient. Keep track of your blood tests – I use a spreadsheet. Write down questions you have and insist on answers you can understand. Research meds, research procedures. Know what tests are being scheduled. Go into each appointment with what I call “patient information”. You will find that nurses and doctors will talk to you in a different manner when you have an informed attitude.

The Feel Good Road: It took me a long time to come to terms with the fact that I could no longer be everything to everyone and that I needed to be good to me. I still fall back from time to time and still forget that I have the option of saying “No”, when the mind and the body is not co-operating. I have a list of things that make me feel good. Sometimes it is doing something for me, sometimes it is doing something for someone else. Talking to my family long distance, looking at old pictures, checking out my new grandchildren’s pics on Facebook, taking a nap, sitting outside when Spring has sprung and feeling the warmth of the sun on my body. Whatever makes you feel good, take advantage. Sometimes a good cry and allowing myself to grieve for my condition is what I need to do. I do it and get over it and can face the world again. Think about what makes you feel good and do it for yourself. You are the only person who knows what you need to get through all of this.

So now as you stand at your own crossroads, look down each road and decide how your are going to travel it. I hope that you can find health and peace and calm in your life.

This long post is something I have done for me, myself… this is one way that makes me feel like I can pass along something that makes me feel good to y’all.

Hello...

I am fairly new to UC, I was diagnosed in 2008 but was suffering from some pretty severe symptoms from 2006.... I was too embarrassed to tell anyone or go to the doctors at first and I thought that it would just pass... I had also just started at University and was weary of who I could talk to about it... I eventually had to go to the doctors as I was suffering from feeling really weak and looking visibly drawn... I had all the tests and was diagnosed with UC and slight anaemia...

I was then put on Asacol and was told to take 3 pills, 3 x per day, I was also given some iron tablets to take and this definitely helped initially, but then in the early part of 2009, I felt that taking the Asacol at this rate was not helping, I think doing the degree and going on nights out consuming alcohol did not help either, but I was in denial about it and tried to ignore the fact that I had UC and it worked in terms of that I felt better ignoring it and the only time reality actually hit home was when I was on the throne... but as soon as I flushed, I felt it as if it was all over...

I am now in South Korea teaching English after graduating and I'm still pretty much acting as if I don't have the disease, in that I haven't taken any medication in several months and I still go out and have the social life of any normal 26 year old male (I think ...), and I have been drinking alcohol pretty much every weekend, however, I do keep fit in the week and play football on the weekends....

But, I have had some bad phases and more recently I have had a continuous run of really bad symptoms and feel weak and look drawn again... I soiled myself at a meal with a friend recently, which IS funny once you're not in the situation, and luckily there was a shop nearby that sold some ‘thundercrackers’, so I told I guy who I trust what had happened and he had to go and buy them, so I could clean myself up and change into the newbies, without having to go home in a taxi, commando, to get another pair...

This is maybe only the 3rd or 4th person I have ever told and luckily he understood as his dad also had bowel difficulties... unsure why I even felt comfortable telling him, as usually I would be really embarrassed... but I just had to laugh at it...

So this is the first time I have actively searched for forums about the disease, as I think it may be time to get real and deal with what I have got... I suspected bananas could have been the cause, as I have been having them recently after football training, but I notice some posts recommend them as a good food...

I'm a little worried now, as my fears of having my bowel removed are resurfacing... it was one of the first things I was told, could be a possibility, when I went into the hospital and now I am remembering how serious my little secret really is...

This has been a great release and I feel that reading over my post, some will just tell me to stop being so stupid and get to a Korean doctor, which is what I'm obviously going to have to do... It just means telling my agent about my disease, which is possibly something I should have done in my application, I guess he'll get over that though, as he is a high school friend, luckily...

Anyway, I feel I'm definitely taking up to much forum space, so thank you for this opportunity of release, interaction with others in a similar situation and general information collection... X x

What advice would I have liked to have over 9 years ago when I found out I had this disease?

1. Doctors are good for prescribing meds. They cannot cure you and will tell you UC is incurable. Don't believe them but take the meds to get out of a crisis and maintain them to stay out of the hospital.

2. Read real peoples stories who have UC or Crohns. I have learned more useful information on forums such as this than any doctor. I found a cure for my UC. It took time, research and more than one try. Stay optimistic that you also can be better.

3. Continue trying alternative cures if they do not compromise your health. My cure came through diet modification but it took many years and at least twice on this diet before I discovered the EXACT foods that helped/hurt my gut. Your cure may be different.

4. Denial doesn't work. I tried it. Once you accept that you have UC you can begin to try different meds, different diets, different therapies to find a way that makes your life better.

5. Don't be afraid of surgery. I talked to two different women who told me they'd had their colons removed. They were both happy, highly functional. One is 30's working in a supermarket and the other active retired who travels a lot. I didn't want surgery but knowing it was not an awful final choice relieved my worry.

I thank all those who have posted information that helped me. You have my eternal gratitude. I include my DH in this since he started me on what has become the best year I have had in the last 9.5

Denise

I hate this disease so much! It has taken my life away. What is so frustrating is that doctors do not know the cause and cannot advise on how to prevent it. Sometimes I think I can not believe them, and the whole drug industry and healthcare (including doctors) wants us to be sick for life.

I have had constant flareup since 2006, soon after I had my daughter. And it just does not seem to getaway. I have tried every darn drug, prednisone to 6MP and it just does not go into remission.

I don;t believe its just badluck, I believe our doctors are doing a disservice to us. There surely is a cure out there somewhere. But they just wont give it to us, how else will they make their money?

I have been anemic from constant bleeding. When it gets out of control, my doctor asks me to go to the emergency and administers IV steroids and performs colonoscopy. This has been going on since last August.

I have had to leave my job and just waste my life for last 1 year. It is getting at my nerves now. Its too frustrating and disruptive.

The reason for medications is to improve the quality of life. But medis dont seem to have any effect on my UC.

I have reason to believe that someone has an answer to this- and just won't come out!

I am sorry that you are so sick. But I do not believe, for a minute, there is a cure out there that doctors know about and aren't sharing, simply for their own financial gain. Doctors (in general) are doctors because they enjoy practicing medicing and helping people feel better. My sister is a doctor, and I know that's why she does it. She also finds it challenging and rewarding.

I also don't think drug companies are to blame...they've created drugs that cure cancer, after all.

It's just that UC isn't a deadly disease, so less money is put towards finding a cure.

Besides, we do have the option of a surgical cure.

good joke. Here's another one....What do they call a medical student who graduated at the bottom of the class?

Doctor!

q

janettzi said...
 

I was diagnosed about a little over a year and a half ago, and Im not sure I understand it any better now, than I did then. I mean some things, yes, like what I can and cannot get away with eating/drinking; When Im getting stressed and need to chill out; What its like to have a major flare and all the physical and psychological healing that has to go with it. I guess these are kind of like managing the disease.  

Do your MD's explain things for you? Do any of them actually KNOW??

Is it just experience and time for understanding? or is it just accepting that we will never understand, and learning to cope with the unknown?? what, exactly, do you all mean with "Learn as much as you can about the disease"?

Ulcerative colitis is complicated. It's my opinion that it can have a variety of causal factors and/or triggers including, but not limited to, environmental toxins, destruction of healthy gut flora, food allergies/sensitivities, genetic predisposition and poor diet. In my expericence, I ignored all the early warning signs and poor digestive health issues for years before a course of broad spectrum antibiotics triggered my first major UC flare. Once you're sick enough to have an IBD diagnosis, it takes a long time for the body to heal. We're used to instant results and we'd like to try something and have the body give us immediate positive feedback, but most of the time, it doesn't work that way and it certainly can be frustrating. It appears nothing is working, so we go off the bandwagon and stop meds or eat a ton of stuff we know isn't good for us and we suffer. Then we clean up our act and start over. This is human nature and I'm betting most of us have been through this cycle many times. Keeping a journal of symptoms, stress levels, diet, etc. can really help you see the big picture. I think you do have to accept that no one has all the answers, but along with that, you have to learn to listen to your body and trust your instincts.

I've worked my way through over six different GI docs in the 10+ years I've had UC and many of them have not adequately explained things to me. Some have discouraged me; some shoved pamphlets supplied by the pharmaceutical companies at me. None of the GIs I've seen could intelligently discuss natural or alternative therapies. None have shown any curiosity about my ability to maintain a long-term remission. I do believe most doctors have good intentions, but there are many who are uninformed concerning new treatment protocols. Our healthcare system being what it is, few have the time to really talk through complicated digestive issues and, in their defense, many patients don't want the hard answers and are only looking for the quick fix.

This is why I say you must be your own advocate and must "learn as much as you can" about UC, about how a healthy digestive system is supposed to work AND about autoimmune diseases. Many folks who have UC have (or will develop) other autoimmune conditions. If I could recommend one book for you to read, it would be Optimal Digestion. This book is a powerhouse of information about the digestive system, the myriad causes of digestive disease and the cutting edge treatment options. http://www.amazon.com/Optimal-Digestion-Strategies-Achieving-Digestive/dp/0380804980/ref=sr_1_1?ie=UTF8&s=books&qid=1272306869&sr=8-1

Hi everyone,

             I am new here and thank you for having this forum for people like us who are dealing with UC. I have had UC for about 6 years now. I have learn that dealing with UC can be very fustrating. I just have a question for you to see if you have the same problem with your GI that I do. When I go to his office the only thing  he does is give me a perscription for Lialda which I have been on for over 2 years. He never follows up with blood work or anything. I have just learned with an x-ray that my spleen has enlarged and I still don't know what caused it.The reason for the x-ray was because I had blood in my urine so they was checking my bladder and saw that my spleen was enlarged. Found nothing in the bladder. This was in another

State that I had this done so when I came back home I went to my GI and he said  he took blood work on me 2 years ago and my liver looked good so he's not worried. My question is should I check with another doctor. He never takes my blood work or anything. The only thing he does is change meds. Right now I am on  Lialda 4 pills a day for my uc , I have been on others but Lialda seems to work the best so far.  I was told that I should be monitored every so often and my GI said he don't do that. I am trying to find another doctor but it is very hard to find one that is taking new patients. By the way Lialda is good sometimes but does not stop the flair ups. I Just need to know if I am the only one with a GI that I feel don't take my problem seriously or maybe I worry to much for nothing. Confused and worried!! 

As a newly diagnosed member with UC The posts I read today really touched me I feel scared and frustrated all the time but I want to be strong because its is a part of me now. Thank you to to all who share there stories it is the an inspiration to help me achieve that.

Actually we have this in our resource section :) But thanks for the bump!

Hi everyone,

I just joined this forum after browsing the web for more information on UC.  I am a 24 yr old Male and started having symptoms while I was deployed to Afghanistan in 2008-09.  Once I got back and could see a doctor I was diagnosed with UC.  I have tried Asacol, Imuran, Mesalamine enema, a steroid enema, Prednisone, and now 6MP and Mesalamine pills.  There was atleast one different version of Asacol/Mesalamine type pills I tried in there but I cant remember the names.  So far the only thing that has worked is Prednisone.  I eat healthy and there really isnt a certain type of food that I have noticed that upsets my gut more than any others but I will start to keep track.  I also exercise although when I have flare ups like I am having now I slack off because I am just so tired.  I am thinking of trying these probiotics I have read about in this thread, but am wondering where I can get them and what kind is recommended? This has been a frustrating couple years and this disease has kept me from doing things that I have wanted to do career wise.   Any help would be appreciated, and I thank you for all your stories and wisdom.  I am feeling much better just reading about other people's stories.   

Thanks