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

I Need Some Help, I Am Was Just Diagnosed with Colitis

Hi, my name is Holly, I am 47 and just been diagnosed with ulcerative colitis on Saturday 3rd Dec, having had Irritable Bowel Syndrome since my teens, and suffering from all the pain associated with it. When I was 23 I cam down with M.E (Chronic Fatigue) and have been very ill bed ridden for 3 years, Food Intolerances etc, tried loads of therapies and spent most of my saving on doing so. Now been told I have UC what do I do? diet is a problem anyway for me, how did I get this? these are all the questions I am asking can anyone help me? I would be most grateful. Holly.

Also:

I am also an Asthmatic on inhaled steroids.
written by Holly
submitted in the Colitis Venting Area



fatigue

10 Responses to I Need Some Help, I Am Was Just Diagnosed with Colitis

  1. Blake December 11, 2011 at 9:47 pm #

    Holly, sorry for the bad news you got but you’re in the right place for support. This website has all kinds of good advice, some may work for you, some may not, some may contradict what someone else says. One things for sure and everyone will agree, UC sucks! That being said, you didn’t give hardly any info in your story, how many times are you going to the bathroom, are you seeing blood (how much), gas, stomach cramps, etc… I’ve learned that this disease effects us all differently, some people live with it for a long time, are able to control it with drugs, diet or other crazy remedies and will go into remission for years. Other people get this disease (like me) and it takes over very quickly, drugs, diet and just about everything you try doesn’t help. I know this sounds bad, but I just had my colon removed December 6th at the age of 30, so only like 6 days ago and I feel better already than I did all last year. My advice would be to get a good doctor, hopefully someone who deals with UC and Chrohns all day every day. Go over your options, they’re gonna start you off with Prednisone, sulfasizine, asacol or something similar. These drugs may just be what you need. Change your diet if you think its gonna help, you have a lot of good advice on this site for that, but it doesn’t work for everyone. Pay close attention to your symptoms, maybe keep a journal to help. You didn’t give much info on your story so I’m not sure how bad it is, but I would have bloody diarrhea every day and would take 12 to 25 dumps a day for 5 months straight before I decided to get rid of the problem (my colon). I’m not suggesting you take this step at all, but that’s how serious this disease can be. I don’t want to scare ya, but take charge, get a good doctor, study up, and use this site for support cause we’re all here for a reason. Good luck to you.

    Blake

    • UC mama December 11, 2011 at 11:33 pm #

      Hi Blake,
      How are you feeling? Are you still in the hospital? Is a 2-part surgery? How far had your disease progressed? May be getting closer to surgery, so want to prepare as much as I can.

      • Blake December 12, 2011 at 12:43 am #

        Hey UC Mama. To answer your question, I’m feeling quite fantastic which is a little weird to say considering I just got my whole colon ripped out 6 days ago. I’m off the toilet and had no worries on the long drive back from the hospital whether or not I would have to take a dump or crap my pants, that’s really been the best thing besides not being scared to eat and just an overall better feeling along with a new outlook on life. I think people with UC get so used to feeling like crap, it becomes normal and we don’t know any different. I know I never wanted to get my colon removed and swore that I wouldn’t, but am glad that I did before I lost more weight and became less healthy, which could lead to complications. I met a woman who went through the same surgery as myself (actually met a whole floor of people and I was the youngest at 30 years old) that was having complications because she waited so long, she was out of shape and she let the disease drag her down too far. She’ll be fine, I just had to listen to her wine a lot, haha. The chances are, if you’re UC is outta control and you’ve tried everything, it’s not just going to go into remission or get better on it’s own and you’re not going to be feeling better anytime soon. The choice to remove your colon is definately something you should research and think of long and heavy. I was out of options and my doctor was urging me to and I had already been mentally preparing myself for the fact that I was probably going to have to, so that made it a little easier and my doctor had me on the surgery table a week later. To answer your other question, the surgeon told me my colon was in real bad shape, mainly the lower portion but it all had to go. He didn’t go into specifics, but I knew it was bad anyway. I am doing the 3 step J Pouch surgery mainly because I didn’t want to become impotent, he said 3 part was a little safer for men although the impotence thing is very low risk, but I didn’t want to take any chances. I gotta lotta love left to give to my wife… hubba hubba. But there is a 2 step J Pouch. I still have my rectum and actually passed a little stuff out of it the other day, but the doctor said that was normal so I didn’t freak out. No blood, just some I don’t even know what to call it came out. Changing and emptying the bag is getting easier everyday. I keep waiting for other complications because I’m only 6 days out, but everyday gets better and better. I am loving life again and definately feel like I’ve made the right choice. I’m in no rush to get the other 2 surgeries at this point because I want to heal up, get back up my stength and then make that decision when it comes. At this point I’m just happy and if you’re at the point where your considering the same decision I just made, you’re probably ready to be happy again too. I’m not telling you to do it by any means, but just a couple weeks ago I made that decision and I know what you’re talking about. Let me know if you have any questions or if I can help you at all, I can give you my email or phone if you want to talk about it, I ain’t got nothing better to do, just enjoying my vacation till I go back to work. Take care UC Mama.

        Blake

  2. UC mama December 11, 2011 at 11:30 pm #

    Hi Holly,
    Welcome to the site. I’m a 44-yr old mom of 2, with UC, Hashimotos’s (thyroid disease) and have IBS.
    What tests have they done to confirm your diagnosis, and what meds are you on?
    What symptoms are you having?

    Diet will play a part in how you feel, how you heal, but everyone is different. Some of us have similar reactions to food, but it’s also trial and error and knowing what you need to stay away from, at least until you’re better; sometimes indefinitely.

    There’s lots of support on this site, but since this is all so new to you, keep asking questions, read thru others’ stories/updates, and get some of the books out there related to the disease and how to manage it.

  3. Therese December 14, 2011 at 10:56 am #

    Hi I was diagnosed with Ulcerative Colitis on Nov 15th,2011, he said it is a mild case but involves the entire colon, my symptoms are, a lot of gas cramping and pain in lower bowel area, nausea, and some blood but not with every bm, and I don’t really get much D, I also get anxiety with it, I started feeling bad 2 months ago so went in to get checked, I have had these symptoms off and on for about 15 years and thought it was just irritable bowel, I also have alergies to dairy and wheat. My questions are is surgery commen or is it just in a few cases, will mine stay mild always or get worse, and what percentage of people can end up with colon cancer. I ask these because my doctor didn’t take much time to answer all of my questions ans I’m a little stressed about this. He put me on Liada two a day. And on my own I have been drinking aloe vera juice which has helped a little, I’ve been on that for a month. I just hope to get back to a normal life and go on with not too many problems down the road. Anxiety has been one of the worst things that has been accompaning this, also my doctor told me I will be able to eat anything when in remission, but when I start doing that it gets bad again, does this mean I can’t ever eat bad again? Thank you for all your help.

    • Rebeka
      Rebeka December 15, 2011 at 10:20 am #

      Theresa, like Blake said, the disease is hard to figure out. I don’t know if the disease automatically gets worse for everyone, but I don’t think so. My great-uncle has had it for alsmot thirty years and he’s been on sulfasalazine all along, nothing ever changed for him.
      About a month ago I was feeling like you: My doc wasn’t really informative and I was scard and frustrated becasue I couldn’t get control over my body. I think it’s important that we get that stress under control though. If you have anxiety, it would probably help if you found a way to reduce it. Meditation, exercise, whatever works… Stress influences UC. For some, like me, more so than food. I’m also on Lialda, it helps me it looks like. Weaned off the steroids about ten days ago. I feel almost normal now, living with some diet restrictions and anemia, but I feel great compared to five weeks ago! Good luck to you!

  4. Blake December 14, 2011 at 11:30 pm #

    Hey Therese, I’m not sure what the exact statistic is, but I think it’s something like 25% of people with UC end up getting their colons removed. You listed your symptoms, but didn’t say how many times you go to the bathroom a day, that was my biggest problem. That and the blood and urgency (shit my pants type of urgency). I’m also Celiac (allergic to gluten) which is very common for someone with UC. Most doctors will tell you your diet has nothing to do with UC, but I think most UCers will tell you straight up that there is a clear connection. I couldn’t find one, I tried SCD for a month and a half and have been eating gluten free since last March. I still ended up getting my colon removed. This is a tricky disease, definately hard to figure out. Some people go into remission, others never will. I wish I had more answers, I’d give them all. I’m glad I got my colon removed because I feel better without it. Good luck!

    Blake

  5. Therese December 16, 2011 at 8:59 am #

    Blake, what is weird about mine is that I only use the bathroom maybe four to five times a day when I felt the worst but not really diahrea and some blood and mucus, ice cream would cause more blood, but has never been as bad as some of the posts I read on here, thank God. My doc said mine was a mild case, but I know over the last few years it seems to have gotten a little worse, but tolerable,I hope I can stay on on the mild side and never get worse,glad to hear you are feeling better thank you for your reply.
    Rebeka,I don’t know if this is causing my anxiety or viza verza, I have had times where I can eat anything and be fine for awhile then all of a sudden things I eat start to bother me, so now I have tried to be more careful, one thing I wonder about is the Lialda, It is giving me an irritable bladder and weird headaches and achiness,so may need to call my doctor, I don’t like taking any drugs but doctor says to for the next two months, I really didn’t have bad symptoms before the Lialda, but I want to keep it under control, the Aloe Vera juice helped stop the bleeding which wasn’t much and also helped my nausea but still pretty gassy. thank you both for your help, I’m glad I found this site.
    Therese

  6. Therese December 18, 2011 at 9:06 am #

    One other thing, does anybody take any anti anxiety meds or anti depressants and do they help? I am now thinking the irritable bladder is caused from bowel irritation, have had this before but worse at this time and stress makes it worse. :( Do any of you ladys have this bladder issue? Thanks

  7. Ama January 6, 2012 at 10:17 am #

    Digestive disorders stem from immune depressors – antibiotics, vaccines, high stress, bad diet (high grain/sugar), etc. When the immune system is depressed, bad bacteria, viruses, mycoplasmas, and yeast take over and produce highly toxic substances which break down the mucosal lining of the intestines (i.e. leaky gut, food intolerances, etc.). These substances go through the bloodstream and affect the organs like the liver (the bodies filtration system). When the liver is overloaded, it can’t filter out toxins from the blood. This leads to chemical sensitivites, arthritis, aging, chronic fatigue, etc.

    Vaccines and antibiotics are the worst, in my opinion. For example, the MMR vaccine is a mixture of three live attenuated viruses, immune supressing ingredients that kill good bacteria, and foreign DNA, etc. It’s interesting to note that this vaccine is said to be the main cause of Autism (and 1000’s of mother’s swear by this). Autism stems from chronic gastrointestinal inflamation. There are many mothers placing their child on the SCD diet and making significant progress. Both autism and inflammatory bowel diseases are both increasing. I tell other about the MMR because most people have had this vaccine and studies show it causes a low grade inflammation in the body for years.

    I thought this was very interesting:

    Studies by Dr. Andrew Wakefield showed Measles virus in the majority of the Crohn’s patients studied (found in intestinal mucosa). One study showed a 100% infection rate. Crazy!

    In any case, the immune system is compromised from an ongoing and persistant infection of the digestive tract caused by those immune depressors noted above. Stress and toxins increase with age and this is probably why the symptoms get worse over the years.

    Probiotics are #1 in treating the problem. If Candida is also a problem, take a good probiotic that contains Saccharomyces boulardii (a beneficial yeast). You can find it in Garden of Life’s “Primal Defense” (which includes other strains of good bacteria) and Thorne Reseach has a product called “Sacro-B” (which contains just the S. boulardii). You can buy then both at iherb.com and read the reviews.

    To build up the immune system:

    Stress reduction, adequate sleep, liquid vitamin supplimentation, lots of water and exercise (preferably outdoors,in the sun) are crucial and will build up the immune system to fight the infection. Natural antibiotics such as Olive Leaf Extract and Wild Oregano work very well. The Specific Carbohydrate Diet is a healthy diet and it works! It’s not just gluten that’s the problem. No grains should be eaten at all! Read “Breaking the Vicious Cycle” by Elaine Gottschall! It explains it all.

    God Bless!

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