Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Sadness

Introduction:

27 year old female living in Louisiana. Life is hell. Diagnosed 7 years ago at age twenty. Miserable existence and depressed. Wish I could be hopeful.

Some more about me:

No hobbies, no children or hopes of any in the future due to fear, housebound, and roommate of a boyfriend for several years. I wake up, work, watch tv, amd sleep. employed for 5 years and recently requested to not travel, and was told it may “limit my career growth.” Used to enjoy life but now most days are spent alone watching tv. Supportive parents that live hours away and are older.

Current Symptoms:

Abdominal pain, diarrhea, urgency, anxiety, and self-diagnosed depression.

My Story:

UC has ruined my life and dreams of what I thought it would be. I have been in denial for the last 7 years, and I am now trying to get a handle on the disease. Fed up and fatigued. Completely over it all. Reading stories on here gives me less hope. Colonoscopy next week to see if I have gotten worse. I have an awful GI doctor who explained the progression of UC to cancer in less than 5 minutes. Scared, alone, and numb.

I used to enjoy traveling and going out, but anxiety and fear have taken control. I know i don’t have it as bad as others, but to each individual it is their own personal hell. A close family member has colon cancer, and this is what sparked me to go back to a doctor 7 years after diagnosis. I have no hopes for a “normal” life with a family because I have turned into a miserable person. I thought the stories on here would give me inspiration and I just find myself crying. I long for a life I know will never exist. I should probably see a therapist or “get it together” but I am just over it.

At this point in time I don’t know what to do with myself. Do I find a new job that does not require travel? Move in with my parents so that I at least have decent human interaction on a daily basis? (Rhetoric). My anxiety of life and the future is at an all time high, and my response is to isolate myself from the world. I am so frustrated and should try to get a positive attitude and turn things around because I am the only one that can improve my situation; however, I have always been a glass half empty person. A “type A” personality as my last GI doctor penned in his notes.

Medications I’m Using:

Asacol 800mg 3 times a day. Try to eat yogurt when I’m not traveling with work and started talking probiotics recent, too early to tell if there is any benefit.

written by “Reminiscent”

submitted in the colitis venting area




11 Responses to Sadness

  1. Tim April 7, 2013 at 8:45 am #

    Sadness …

    You need to change your attitude! Remember you have UC … it doesn’t have you! I’ve had it since 1991, sure there are ups and downs but YOU CAN HAVE A NORMAL LIFE. A good start for you may be to find another GI Doctor or try a Homeopathic Physician. The goal is to get yourself in remission, your quality of life will improve, so will your mind. Asacol alone won’t do that. Maybe you should see a therapist ? Having UC doesn’t mean you will get cancer. I don’t. Getting regular colonoscopies will ensure that. There is GOOD information on this site … it shouldn’t depress you … it should help you. GOOD LUCK!

    Tim (also type A personality)

  2. zayna April 7, 2013 at 8:53 am #

    Hi Reminiscent,

    Thank you for sharing your sadness and loneliness with all of us. Every one of us on this site has felt what you are feeling – please keep reading everyone’s posts so that you can take control of your life and get ideas on how to regain a life. You may never have the life you had before diagnosis but there are definitely things you can do with medication, diet and supplement to feel better enough to have bright spots.

    First, asocol sucks for a lot of people – myself included. I was on it for years – it did nothing for my symptoms and just made me feel sick. Now I am on Lialda and Prednisone as well as some supplements. I just started on L-Glutamine two days ago (Bev’s recommendation on this site) and already I feel a marked positive effect. I got the Glutamine from Lucy’s Kitchen. Also Vitamin D3 from the same site – 2000 to 4000 per day can truly improve your energy and mood within a few days.

    Specific Carbohydrate Diet – read the posts on this site about SCD diet – some people see a decrease in symptoms within one month of following this diet strictly. I would be just like you without this diet.

    Please keep reaching out – there is hope I promise – things can get better for you as they have for so many of us.

  3. The Old Linebacker April 7, 2013 at 11:04 am #

    Dear Reminiscent:
    I too was saddened to read your story. My 19 year old son was diagnosed with UC last August. He is a college football player trying to deal with college and a strenuous, violent sport along with this new life challenge. I have researched this disease a lot having a child who deals with it. Everything you read on this website is great advice and heartfelt from those who give it. As everyone says you must find what works for you as each person is so different.

    Please take some time to inventory what you are blessed with:
    You mentioned you have supportive parents. Many do not. I am sure they love you and feel a certain pain in seeing you deal with this. I know as I pray everyday that I can take this UC on myself and have it leave my son.

    I am not sure if you are a person of faith but if not I would urge you to become one. Without my God and the faith I have in Him we could not deal with the pain, uncertainty and tough days that this disease presents. Pick up a bible if you do not have one and start reading. Some verses that have helped us are:

    Romans 8:28
    John 16:33
    James 1:2-5
    Philippians 4:13
    Isaiah 41:10

    There are many others. Please remember your life is NOT over. You are a young woman and although you have been dealt a setback you have a long, prosperous life ahead-God willing. You do have a purpose and although it may take you some time to uncover it when you do you will see God’s hand in your life.

    I will pray for you as many will. Do not give up, try everything and keep posting as many with this disease are willing to help.
    God Bless!

  4. Cindy April 7, 2013 at 12:14 pm #

    Hi Reminiscent,

    Just wanted to say that although you may feel alone right now there are many of us in similar situations who really do understand. Some days are worst than others. All of our stories are a reality so some are discouraging and others are inspirational. I have found many excellent ideas to try and some have worked and some have not…..I’ve learned that no 1 formula works for everyone so we have to be willing to continue to be diligent and open to try just about anything. I have been using the SCD diet as a guideline, used some of Adam’s recipes that work for me. Although it is said that diet doesn’t cause UC it most certainly will improve your symptoms if you are eating the food that is “your” colon friendly. If you have any questions at all I will answer to the best of my knowledge.
    Getting your symptoms in a better place is utmost important and will most definitely make you have a better outlook on things. Your career can hold on for awhile, who knows what is ahead for you, you are still a very young woman with so much life ahead of you.

    These are some supplements that work for me…google them for the list of benefits. Vitamin D3, Sublingual B12, Liquid form Omega 3, L-Glutamine….. and in the evening Human Strain Probiotic, before bed Calcium, and I have trouble staying asleep so sometimes I take sublingual Melatonin.
    I am on Salofalk(5-aminosalicylic acid (mesalamine, mesalazine)) 1000mg in morning and in evening.

    Many other folks on this site are taking supplements or other kinds of things that work for them. One thing for sure it is necessary to do a ton of reading but you are worth it! Remember that!

    I am currently trying nicotine patches but it is too soon to tell if it is helping. There is always another idea…..every time I read more…..so do not give up hope…..you are not alone.

    Feel better soon,
    Cindy

  5. Reminiscent April 7, 2013 at 1:37 pm #

    Thanks for your responses and support. I will definitely read up some more on supplements. I recently purchased breaking the vicious cycle and I’m trying to understand the SCD diet. It’s a bit confusing (making homemade yogurt?!) but I’m willing to give it a try. I am still waiting to hear back on my colonoscopy results, but shortly after the doctor told me everything looks normal…which doesn’t make sense to me but better than telling me it looks worse. Really hoping I can find a new gastro dr. soon, who is focused on actually helping and listening. Sometimes I just feel like an insurance claim with him.

    Work told me that they cannot accommodate my travel requests, and I would have to go through a formal HR process. Has anyone done something similar, and if so, what were the results?

    Thanks xx

    • Terri April 8, 2013 at 9:01 am #

      I want to encourage you to see a psychiatrist. I am a 50 year old mother of a 5 year old daughter. I have had UC and depression/anxiety for 30 years. Last December I had a colectomy, currently using an ostomy bag and preparing for j pouch surgery on April 24. I am plagued with the same symptoms you describe. Take it from me, the depression & anxiety & hopelessness you describe just keep feeding on themselves and it is not likely that you can will them away. You deserve to feel better. I’ ve gotten to the point where the depression/anxiety has gotten stronger than my ability to overcome them. I went to a psychiatrist and she prescribe a medicine that started working within a couple of days. None of my problems have “gone away”, but my perspective has shifted and I am able to begin to take steps to get out from under this black cloud, whereas before I, like you, was resigned to believing that things would never get better. You can conquer this and have the life you hope for. You deserve it.
      Good luck,
      Terri

  6. bev April 7, 2013 at 5:12 pm #

    We have all gone through these same feelings…and you have brought to light again just how bad it was and can be. I think it’s easy to get depressed and down when you have UC. It’s just about the grossest condition out there, right?! Why me, I always think…

    Anyhow, believe it or not, somehow we pull ourselves out of it. Please look at this site…the alternative treatments to the usual meds that are prescribed for uc. The meds can make you feel ALOT worse, even mood wise. A GOOD probiotic, some L-glutamine, and vitamin D for inflammation….that’s all I take anymore, and I feel great for the first time in 14 years!! No kidding!

    No more meds for me.

  7. bev April 7, 2013 at 5:13 pm #

    Sorry…I wasn’t finished…I feel happier now, too. I have managed to find my ‘cure’. I think we all have to do that. It’s a pain, and it’s work…but if it means health and happiness, we gotta!!

    Bev
    :)

  8. Janene April 7, 2013 at 6:09 pm #

    I have read several people that must have it a lot rougher than Ido or I just don’t know any different. I have had uc for 36 years. I am married with two wonderful and grown children. I was diagnosed at the age of 10 so it is hardto remember life before uc. I do take anti-depressants along with the lialda and suppoitories for flares as I have had a kidney removed 6 mo ago due to kidney cancer. The don’t want to suppress my immune system oo much as it could allowthe cancer to grow again. You need to look at the good things you have going and remember life is too short to dwell onthe bad stuff.

  9. UC Family Boy
    Uc family boy April 8, 2013 at 5:48 am #

    Rem and all else UCers,

    I have heard of so many people with long remission times 10,15,20 years even. It is possible. It’s a bit like the flu. People get it, and we get over it..and the chances of getting it again just depends on if you make yourself vulnerable to it i.e. wearing a t shirt in winter!!

    With UC I am a strong believer our body has stopped producing something it naturally does which causes these problems we are faced with. Stress to the body is a great indicator to this. And when the digestive track is going through stresses it is the mucus layer that is first to stop working efficiently and than the knock on effects…leaky gut, food intolerance, asthma, colon cancer…

    I advise everyone to research into building up your mucus defence. Get this up and running efficiently again and I promise you UC will not be a problem. We are all different, some who have had UC a long time and its knock on effects will need more work to achieve the results I am currently finding. Only a week ago I was all blood and mucus and 10 BM and quickly losing weight. Tomorrow will be exactly a week since my symptoms increased from its ongoing flare state and since building up my mucus defence I go once with no blood mucus and the best part has been when I tried my luck and eat chocolate, bread and….no problems.

    Still a long way to go, need to still address the bacteria imbalance and start producing more SCFAs and I am convinced I will not need to worry about UC for at least a very long time if I watch myself unlike before.
    Will always be septical to UC like how everyone is to the flu, but if I ‘wear my t shirt’ I won’t have to worry about UC!!!

    Infact recent research has shown that things like bacteria degrading enzymes, pharmaceutical drugs, injury and stress and processed foods with emulsifiers degrade mucus lining and UCers have a disfunctional mucus layer. One Germany pharmacy have developed a new drug phosphatidylcholine (PC). Unfortunately I think it will be still 2/3 years before entering the market…if at all.

    Further research I have come across has shown that there are other elements like L-Glutamine, Serum or L-Threonine (amino acids) that are metabolised by mucus. There is a whey protein that has all of the above amino acids, and test done on rats with colitis has show whey protein to not only bring on remission but also promote the growth of healthy bacteria…bifido…

    I am taking l-Glutamine that is great for healing tissues, whey protein which has the essential amino acids I been on for 1 week and awaiting L-Threonine from USA (not available in UK). I take nothing else, no anti-inflammatory drug/supplement and no vitamins but I am not getting ahead of myself as I know the long road still to travel and I might need more keys to various locks.
    I wanted to write an article on here with referrences to the papers I’ve read…but google phosphatidylcholine and ulcerative colitis and or L-Theronine and Ulcerative colitis.

    How can doctors get it so wrong for so long!! I get offering anti inflammatory pills but that’s a response pill to an already existing problem…not dealing with the real problem. The defence system is the real issue for us UCers. Goblet cells produce mucus in response to ‘attack’ but when this isn’t efficient anyone can get UC.

    Build up your mucus layer (MUC2) and protect your epithelial cells so they can go back to functioning probably, eat prebotic foods to promote healthy pH levels and development of friendly bacteria and UC will be part of your past and not your future.

    UCFM

  10. Teanna
    Teanna April 9, 2013 at 8:36 am #

    Hey Reminiscent,
    Thanks so much for sharing your post. I think so many of us feel that way but we try to put on a brave face… that doesn’t mean we don’t feel depressed and hopeless underneath though. I remember going to see my doctor when I was 20 (I’m 22 now) and in a bad flare. We were chatting and talking about my symptoms and all seemed fine, when he suddenly asked me how I was handling the disease mentally/emotionally. I immediately broke down and started bawling in his office! We talked about it and he prescribed me anti-depressants and told me that many, many people with chronic illnesses, especially young people, struggle with depression and coping. That really helped me to hear.

    Anyways, I am certainly not professing to understand your situation. However, though I think sometimes a positive attitude and trying to be hopeful and looking on the bright side can be so, so helpful, I also think that sometimes that’s not enough. You mentioned that you are the only one who can improve your situation… ultimately, yes, it’s you that can improve your situation, but that doesn’t mean you won’t need help in doing so! And as you say, you have “self-diagnosed depression,” so please don’t think you just need to “get it together.” If you really are depressed, you can’t expect to just pull yourself together on your own! I think seeing a health care professional could really help, as they could give you lots of options (anti-depressants, support groups, cognitive behavioural therapy..), because I know how important it is to deal with this disease both physically and mentally.

    It’s not easy by any means, and I am a firm believer that everyone handles it differently because everyone has a different personality, support system, beliefs, etc. Throughout my 9 years with UC I’ve leaned heavily on my family for support, I’ve joined online communities like this one, I’ve been on anti-depressants, I’ve exercised, I’ve tried meditation, etc. etc. etc. All to try and cope with the hardships this disease can bring!

    All the best to you! Just remember that a positive attitude it a MUST to survive this disease, but sometimes we just need a little (or a lot!) of help to get it, whether it’s from medications, therapists, family support, etc. Everyone’s journey is going to be different, but once you get there you’re life can and will be so much better!!

Leave a Reply