Does It Actually Ever Get Better?

what colitis remission looks like

Introduction:

Not really sure where to begin! I am 25 years old from the UK and was recently diagnosed with UC (July)- well doctors are like 80% sure. I work as a finance analyst and I reckon my lifestyle is what got me here. Lots of stress long working hours and poor eating.

My Symptoms:

As I get worse again, I have pain in my stomach and just constantly going to the loo! I fear going out. Really bloated all the time.

My Story:

It kind of crept up on me and had no idea…just thought it was normal! Definitely been an eye opener. I was in hospital for a while and I felt I was getting better started to be happy again…was put on steroids. …i have come off them now…and i am getting worse again..

I have been told a gluten free diet may help…

I have just gone back to work- and they haven’t been supportive as they don’t understand the disease. You look fine on the outside but feel crappy inside!

I really want to try a new diet. not sure where to begin?

I am normally a happy out going person.  Now i feel its all over. Definitely feeling very depressed about all this. I rarely go out now and just don’t know how to explain to friends.  I feel embarrassed.
Our family doctor has been great.  However the waiting times at the hospital have been very long.  Just dealing with the hospital has been a big stress!
Family and close friends have been very supportive. I feel very lucky in that sense.

I am concerned about the future.

Does it ever get better? Without steroids?

I am so scared of UC becoming even more serious.
Can i do anything to help myself?
What are the symptoms like when UC goes into remission?

I am also curious- when other fellow UC’ers sleep does sleeping on a certain side trigger the need to go the loo? Literally i can only sleep on my back and my right. If i turn to my left i have to run to the loo! i find it very odd!

Also my skin has suffered during this time. my face has just been breaking out alot! Worse than when i was a teen.

I have also become a constant complainer!! please help!

Where I’d like to be in 1 year:

Able to go out without having to be scared to crap my pants!

Colitis Medications:

I was on steroids- which worked while i was i on them!
Asacol- i am on the max dose for this, I don’t think this works for me

written by Kelly

submitted through the colitis venting area




10 Responses to Does It Actually Ever Get Better?

  1. Ann September 24, 2012 at 7:58 am #

    Hi Kelly, I just recently discovered Adam’s website (a great catalyst to reaching out to others with UC)and have been diagnosed with colitis for over 25 years of my life. In and out of remission, sometimes going years without any flare ups. I constantly review my diet and ways of relieving stress. My biggest suggestion is to try eating oatmeal with honey for breakfast every day. If you are as lucky as I am, I have found amazing results. My doctor said I would be on asacol for life…I think I would rather be on oatmeal and honey for life…I take six asacol a day and am thinking about reducing it to see what happens…Have NOT had any steriods for over 10 years now…dealing with UC is a constant evaluation of how to reduce stress and figuring out what foods may trigger or help a flare. Good luck with your UC adventure. Ann

  2. Adam
    Adam September 24, 2012 at 8:15 am #

    Dear Kelly,

    I’m very sorry that you’re feeling awful with your UC symptoms right now, especially that you are turning into a complainer (that’s a joke Kelly, you sure as hell aren’t the first temporary complainer with UC, there was one named Adam too for a while:).

    You bring up a ton of super uber common questions about what’s going on and how to move forward with UC.

    As for diets, there’s man different diets that UC’ers try. If you go to the top right hand side of this site and type in diet in the search, you’ll see what I mean. As for me, I base my diet off the Specific Carbohydrate Diet thinking. The basics of this diet are: NO grains, No sugars other than sugars in some fruits and honey, cutting out most dairy(all dairy is best when starting out) and getting rid of the alcohol (especially when starting out). That’s not all the details, but quite a big chunk. SCD is popular, but there’s also stories on this site from people who have used the GAPS diet successfully, and even other people who have made other diet changes and found success. There’s a huge group of people (not including me) who use probiotics religiously to help with their UC by themselves or in conjunction with other medications/and or diet treatments. So the point is this, you should do some reading, do some internet searching, and you’ll find out there’s a crapload of information at your fingertips.

    Sleeping on left side compared to right side…great question, yes, overall, more people with active UC especially lower colon inflammation have more difficulty with sleeping on their left side. That’s part of the colon having active colitis, and once things are healed up, you’ll be sleeping however you used to once again.

    When in remission, life and how the body feels can simply go back to the old way you remember. Not everyone makes it there, sometimes you’re really close to it, but not quite there. It all depends. But the point is this, active symptoms don’t go on forever, there are too many ways to treat this UC, and although one option might not work, there’s a CRAPLOAD of others. I’ve found success with diet and some other things, others find success with medications, yoga, surgery, shaking two tree branches out in the forest…yada yada right. There’s always options, and you’re gonna get better.

    hang in there, and I think you hit it right on the head, the hardcore finance jobs with long hours and bosses smacking deadlines down to me would would be very stressful.

    One thing I’d recommend is that you start talking more to some people at your work. Not everyone on this website agrees with me on this, many people disagree, but I’m all for it.

    Some of the best moves I’ve ever made were telling co-workers/bosses/ friends etc… exactly what the UC is all about, AND exactly the symptoms I was experiencing at the time. Made a crapload of difference when I needed to take time off, or just take a serious break.

    Wishing you the very best from the west coast of California,(and now time to go to work for me)

    -Adam

    Once again, you’re not alone, what you’re going through is SUPER friggin common for newly diagnosed UC’ers, but it can and will get better.

    Take care, and thanks for posting your story,

    -Adam Scheuer

  3. Allison-3
    Allison September 24, 2012 at 10:53 am #

    Hi Kelly-
    Sorry you are feeling bummed (Ugh! we have all been there). I totally back up everything Adam says… research this site and don’t be afraid to try a 180 degree solution if it feels right for you. I am coming off of a 6-week flare up after being in lovely remission for a year. I wouldn’t be honest if I didn’t admit that it has been painful, totally sucked and scared the heck out of me. However, I am out of the worst part and I have wonderful support, 2 loving kids and a great DO/chiropractor who wholeheartedly believes in my healing.
    Remission is AWESOME!! And something that for you and all of us is totally attainable. I gave up the meds early on bc I had no faith in the science behind them and they made me feel super SICK, grumpy and YUCKY (UC is quite difficult to treat and understand, still kind of a guessing game). So- for me knowing that I reached healing and remission with a more holistic approach makes me feel 100% confident I will be there again. No fear of pooping in your pants WILL absolutely happen (once I even peed myself in Target YIKES!!!)But I survived those humiliations and now I can laugh about them. This disease has taught me a lot of lessons I don’t think I would have learned otherwise and I am oddly thankful.
    My main focus is figuring out how to live a life with very little stress (tricky because I am stubborn and Type A). I had a very stressful Summer and I was putting unfair pressure on myself to find a Biology job and BOOM Flare Up! Silly me. Now I am watching movies, reading books and just relaxing!
    Hang in there. You have a wonderful and sunny life ahead of you once you climb this UC mountain! Best wishes for healing. I’m sending you a big hug from the shores of New Jersey.
    Allison
    PostScript- keep a food journal to help you see a pattern to what you may need to avoid for a bit (for me it is ice cream, milk, coffee, gluten, peanuts, coconut milk, sugar, fried and super spicy foods) I eat lots of cooked veggies and fruit, minimal grains, eggs, fish and meat, little raw cheese and homemade yogurt, even a little dark chocolate now and then (not as much as I would like though). :)

  4. Thomas September 24, 2012 at 1:16 pm #

    Hi Kelly,

    first of all, yes, it will get better. I was disgnosed 3 years ago while I was on business in India. I was hospitalized there to stabalize me long enough to fly 15 hours back to Chicago. Lonf story short, I had a real bad fall back due to lack of care with the doctor here in the US, but finally found a specialist who got me out of it. In my experience, all the mesalamine medication, does not help while you have a flare up, but only once you are in remission. I was in the hospital and received an aggressive treatment of cylosporin, mercaptopurin, and steroids. I have taken these hammers for over 1.5 years. My doctor also recommended, that I start smoking 5-6 ciagrettes per day and as soon as I started my symptoms got better by the day. Yes, smoking is bad for you, but so is living in the inner city, spray on tan, burning candles in your house, and 1,000,000 other things. I made the personal decision to pick up this habit again and now after three years I am in total remission. Some days I don’t have to go at all and on the worst days I might go twice. I have not adhered to a regular diet, but just eat whatever I am in the mood for. I was slowing down on fiber a lot, which made the choice for steak and potatoes pretty easy. About six months ago I added salads and fruit again to my diet and couldnt feel better. And to give you the heads up, you might experiennce something like entropathic arthritis which completely takes you out of business and everything you do hurts to the point you cannot take it anymore. That is just a little side effect of people in a bad UC period. It is important that you surround yourself with people you truly care about you. Forget the rest. These friends that you will have for life and your health are the only important things in life. And yes, I still smoke and I prefere cutting a few years at the end than going through another episode like I did for 40 years. Good luck, hang in there. It will get better again.

  5. Bev September 24, 2012 at 2:39 pm #

    Hi Kelly,

    First, read Adam’s post. He has the BEST advice out there! Oh, and he is the ultimate cheerleader, too!! I hooe that came out right…lol…

    Also, please try a good probiotic. Take it for at least a month, faithfully.(Then forever) I know that it will help you to begin your way to remission.

    My two cents! I think everyone should be on probiotics. They are essential in colon health. Step one, really.

    The asacol never really helped me either…it actually made things worse the longer I took it!

    Hang in there…we have all been right where you are. It can suck, but that always passes. thank goodness, right?!

    Cheers:)

  6. Trish September 25, 2012 at 1:41 am #

    Hi Kelly. A fellow Brit here (though I live in France). Sorry to hear you’re feeling poorly, and at so young an age. Yes it does get better. I would say, get yourself on the SCD as soon as you can, especially the yoghurt, which is rich in good bacteria. To counteract your long hours and stress, sign up for a yoga class. I also find swimming very helpful. You need tools to help yourself calm down and release the stress in your gut. In the UK I worked long stressful hours as a journalist and it is very bad for your digestive system.
    Not being able to sleep on your left will make sense to you if you look at a picture of your colon and remember it’s a mirror image – with UC, the main problems occur in the rectum, sigmoid colon and descending colon, so if you lie on your left side, you compress these, causing pain and frequency. I sleep only on my back or my right side.
    Good luck and feel better soon. Trish :)

  7. Steve September 25, 2012 at 6:58 am #

    Hi Kelly,

    I am from the UK too, just on the out skirts of Warwickshire and I also work for a financial institution! I also have Colitis, I have had it for about 7 years, but to be honest for the most part of that I have just been ignoring it and using the steroids to get by and go through life, still having symptoms and only just recently have I decided that actually I am going to do something about it rather than face all the other nasties you can get from long term steroids use.

    I will talk about what has helped me get better and my honest ( I am blunt, straight talking) opinions about what I have been treated with and how the gastro doc ( mostly) are the biggest waste of time you will experience. The doc I see is “a pioneering world expert on gastroenterology” BS! Again doctors are trained to treat symptoms not causes and the first thing the Doctor told me was, ” You will never get better, you may never go into remission, you can eat what you want and it will make no difference” Unfortunately you will be faced with a wall of Ignorance ( in most cases).

    Well that was depressing! Good news! YOU can help yourself! Important thing to remember is that you have had 25 years to damage the gut, so it will not heal instantaneously and you need to be a glass half full person, not a glass half empty!

    There are many options like the others have said, Drugs, surgery, diet, herbal, yoga, Acupuncture. If you are a person who before you got sick was like herbs are for hippies! ( I was one of these people) thinking that they were looking to get high or believing in complete and utter… You might have to open your mind and read round on medicine and that something like over 90% of all modern medicine is derived from plant sources! Maybe the hippies aren’t so crazy!

    I am unfortunately in that percentage where asacol, pentasa, azathioprine and remicade actually make my symptoms worse, but actually thinking about it, most modern medicine will treat symptoms not cause, think about it, when you have a bad cold, usually take paracetamol, caffeine and a decongestant aka beechams or night/ day nurse, these do not heal you, but help stave off the worst while your body deal with things. RANT OVER!

    Seriously one thing I do recommend you do is read, find literature on the subject either through google ( beware the miracle cures, they don’t work, I tried them all and spend a few grand on them.. just warning you! The best places to look are on sites like these) look for forums such as the nacc ( national authority crohns and colitis) or ones like this with practical free advice. Utilize the sick time, sometimes you will just want to stay in bed, but when you can be up and about (albeit in range of a toilet) read books (on the bog?) and when you are not having a bad time, search the internet, get a pen and paper and jot down things that are common occurrences! This is what I did…

    Books that are worth reading in my experience;

    Breaking the vicious cycle- Elaine Gottschall ( get it off ebay or amazon cheap enough)

    This book talks about the SCD (Specific Carb. diet), this diet is hard going, but really worth it in the results and it will explain things at a standard reading format, not science level Stephen Hawking!

    Listen to Your gut- Jini Patel Thompson

    Another amazing book you can get from the nutri-centre based in London, they do it online. These 2 books with delivery probably cost about 70 quid you may be able to get them from the library or e books, but I cannot recommend these enough for the sheer amounts of information in them, that you will find useful to making you feel better!

    I have already wrote an Essay on here and don’t want to clog up Adam’s awesome site! I have been a lurker for a while, never actually posting but reading what people have said. I feel now that I am slowly chugging out the other side of the disease that I can speak from a place of experience in what DOES and DOES NOT work, even though everything is different for everyone.

    If you want to know what I am specifically taking I will happily email you and be a contact point in the UK for advice and support! Don’t give up its hard work, but you can do it! Steve :-)

  8. Kelly September 25, 2012 at 10:26 am #

    Hi All!

    Oh my gosh I wasn’t expecting this many replies. Thank you so much :) Its just so great to chat to other people who know exactly what you are talking about! I actaully had a terrible day yesterday, my first full day back at work after sick leave and it all went to crap (literally) I just got back from sick leave and fear I may need to go back on it! but just taking each day as it comes. My family doctor has put me back on pred and well my gastro guy as discharged me by mistake. Healthcare over here has been very stressful to deal with. I believe the next step for me is to go on azathioprine- I am quite fearful of this as my gastro guy mentioned the side effects were quite extreme and emphasised the risk of skin cancer. Anyway I am taking each day as it comes. One of my close friends is getting married on saturday- like 5hr journey. I pray i can make it!

    Ann- thank you for the advice! I am glad something like oatmeal works for you, although i do wish you said something like cake or chocolate hehe! I will give that a bash. To be honest I think asacol is making me worse. But actually at the moment its just going straight through me! Hope things continue to go good for you! :)

    Adam- thank you for answering my question on sleeping and your whole response in general and I love the cartoons on this website! nice to have a good giggle :) I have taken your advice and am slowly opening up to co workers regarding the illness. Actually is been ok. I have also introduced my manager to the UK colitis website as I realised he actually doesnt have a clue!

    Hi Alison- thanks for the positivity and hug from so far. much appreciated. its so great how we can just discuss this with fellow uc’er around the world! got myself a pretty diary and adding all my foods in there. hopefully seeing a dietician soon! I am also trying to figure out a less stressful life. I think i will try yoga. wishing all the best too :)

    Hi Thomas- I like your perspective. I am glad you found something that works for you. I am finding so many different things that helps UC. Adam was right- craplaods of other options. Its a shame alcohol or cakes dont do the trick too!! Thank you for you advice.

    Hey Bev- i’ve seen your posts regarding probiotics. its makes sense, the concept behind it. I bought yakult over the weekend. is this classed as a good one? :) thanks!

    Hi Trish- I am glad I am not the only on who has to just sleep on their back. I thought i was being weird; yes I am definitely going to work the stress thing! i have been even stressing about stressing to much. My hair is actually falling out :( best wishes

    hey Steve- althought it was a long post it was very much appreciated along with the bluntness :) literally alot of what you said i can relate to! especially not believing in other options- since i work in the pharma industry too! i have purchased the breaking the viscious cycle book- i am patiently waiting for it to be delivered. I will look in the other book u mentioned. happy to have a UK uc’er friend!

    cheers all- have a good day x

  9. shirley NZ September 25, 2012 at 11:22 pm #

    Hi Kelly
    You have had some great answers. There was a time when I thought I would never get better and the thought of living out the rest of my life on the toilet didn’t thrill me at all.I am taking supersheild probionics and having been in remission 9 months and have just reduced my asathoriprine from 3 to 2 daily. Diet, I think has a lot to do with recovery, I concentrate on wholesome foods avoiding artificial colouring, preservatives, and mainly sugar.

    • shelly in maine September 27, 2012 at 4:19 pm #

      Hey Shirley,
      Nice add….but I especlly loved your appropriate typo-i don’t think you did it on purpose
      “proBIONICS”?! :-) I think some day they will have to officially change the name to that!
      :-) Shelly.
      Hang in there Kelly.

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