Ulcerative Colitis Tips


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Spent All Christmas in the Hospital and 5 Times Since

heather headshotIntroduction:

I’m 27 with 4 kids and found out I had ulcerative colitis Xmas eve of 2012, after months of pain, toilet trips, blood and mucus. I ended up spending all of Christmas in the hospital and I’ve been in 5 more times since then with flare ups. I need advise what to do because I have no life at the mo at all!!!!

Some more about me:

I love going out with my kids when I can and I love going bingo with my sister. I love gym but can’t go now and love swimming.

Current Symptoms:

Currently I’m having a flare, sore bum, tons of blood and mucus, pain is unreal and loads of trips to the toilet.

Spent All Christmas in the Hospital and 5 Times Since

Since Xmas I been in hospital 5 times cos of flares and I have completely had enough already. I no people on here have had it years but I just can’t cope with it all ready. I’m currently in bed and have to have help with my kids. What can I do to help my condition. IBD and colitis is ruining my life. Been on steroids so many times they just don’t work. I tried diets and they don’t work either. Any advise I would be very very grateful. My family have to help out with my children all time and partner and friends have had to take loads of time off work. I can’t eat what I like cos I end up being on the toilet nearly straight after. My mum has to push me in a wheelchair around the supermarket some time depending on the pain cos sometime I can be fine one minute and then be in complete pain and can’t stand up properly. I walked to school and on the way back I poo’ed myself and I had to put my coat around my waist s o people couldn’t see and I was pushing the pushchair with my younger daughter and just pushing her made the pain worse. My children have suffered. Loads of times they have had accidents cos I been on the toilets loads and ages.

It all started last year around about November when I was just having blood in my poo but it down to piles. Then I started having Diarrhea and I thought I had a bug and then the pain and the accidents were happening loads more. Then I moved house and the stress of that made it even worse. Cos I moved house I had to register to a new doctors and it took 2 weeks for them to register me and my kids, so when I did see the doctor on the 21st of December I was sent into hospital. I was told by a gi doctor i had aggressive colitis on Xmas eve and was told I couldn’t go home or Xmas. I missed my kids opening there presents and Xmas dinner. I was in loads of pain and very upset cos I wasn’t with my kids. My family came into see me but it wasn’t the same. I discharged myself on New Year’s Eve but was admitted again in January and February and march.

Medications:

Inflammation tablets don’t work, steroids ain’t working now, stuff I put up my bum don’t help. Injections in my stomach don’t work either.

written by Heather

submitted in the colitis venting area




14 Responses to Spent All Christmas in the Hospital and 5 Times Since

  1. Beth April 9, 2013 at 7:56 am #

    Hi Heather. My heart goes out to you in this rough time! And remember, it will get better. It seems there are so many different ways this disease operates, that no one knows what will work for any one person. Maybe the drugs they’ve tried haven’t worked, but the next ones will. Or check out Bev’s posts – she has wonderful supplement experiences that cured her. And do definitely check out Adam’s advice on SCD – that helps a lot of people. You never know. Does your dr. have a plan? Do you like your dr.? If not, can you switch? Whatever the inconvenience, it’s worth it to have your life back – and you will!

    • Heather
      Heather April 9, 2013 at 8:50 am #

      I had the worse nights sleep last night, restless, cold, sweating, running to the toilet and the pains were bad. Had enuff already :o( x

  2. rjw April 9, 2013 at 9:03 am #

    Heather,
    Sorry for what you are going through. It is hard enough managing things even without responsibilities. As Beth says we are all different and experience it in many different ways. That being said I would want to ask you more information. In the beginning it can be difficult to get your mind around all the different things especially during a flare. Since it sounds like your first doctor put you in a hospital I am going to assume the doctor did colonoscopy? I have found that if you want to have the best chance to get a handle on this it is best to address it right away and for you (like you are doing here) to take charge and not play follow te leader with doctors. First thing I would do is go to the doctors office and hospital ask for copies of your medical records such as blood work. Then I would ask for copy of the op/procedure report for the colonoscopy and any other procedure you had including sigmoidoscopy. Then if you had any MRI or CT I would ask for copies of the report of the doctor who is reading the report and while you are at it a CD of the MRI or CT scan as well. You can also ask for chart notes from your doctor as well. I believe you also have to understand what meds you have tried, for how long and create a list. With this website, the internet in general and other doctors you might see all that coupled with all of the medical information about your condition you can attack this medical condition with a reasonable amount of success. Right off the top of my head you will need to try different things suck as lower your stress, start taking “real extra virgin olive oil” 3 table spoons a day. STD diet. Look into fecal transplant. But first get your records, understand the problem, research better doctors in your area and get back to us with more information.

  3. bev April 9, 2013 at 2:40 pm #

    Hi Heather,

    The ONLY thing that works is the natural way. You have to heal your colon. Easier said than done. I think each one of us has to find the thing that works for us. It’s hard work, but it can definitely be done. I am living proof, as are many other UC sufferers on this site. I am not on any meds any more because they simply did not work and they made me feel worse. 14 years straight on meds, and they never really put me into remission.

    A GOOD probiotic is crucial, and L-glutamine, for me….every single day of my life without fail. Those two things have saved my life, so to speak. For others on here, diet (like SCD) has worked…for others, extra virgin olive oil three times per day, while still others have found success with aloe vera juice. Whatever does end up ‘working’ for you, you have to give it time to work. It does not happen overnight. Sometimes it takes a few days, to weeks.

    Cheers
    :)

  4. Bethany April 9, 2013 at 10:16 pm #

    Hey Heather,

    I’m sorry to hear how rough things are for you right now. UC is definitely not a fun route and hard to handle when you first get diagnosed. I have only had it since Oct 2012 and much like you spent a fair amount of time in the hospital and been through the laundry list of meds. I am finally finding remission with Humira.

    The problem with UC is that everybody’s case is different. What may work perfectly for one person may not be the same for another. Sometimes meds are the option and sometimes they aren’t. It’s really going to be a matter of finding what works for you. There are tons of options up here for you to try but make sure to find a doctor you like and work closely with them. Being someone of the medical profession I am a strong advocate of making sure your doctor is always in the know of what you are trying. They may not always agree with you but if something wrong does happen they know what to do and how to work with it.

    Keep your chin up and don’t lose faith. I know its really hard but these things take time and patience. I went from being a very active 22 yo paramedic and runner to spending 3 weeks in the hospital and 3 months on bedrest and only up until maybe a month ago did I begin to feel more like the old me. Hope things improve for you soon. We’re all here to listen if you ever need somewhere to vent.

    Bethany

  5. Heather
    Heather April 11, 2013 at 5:24 am #

    Omg Bethany it’s really good I an relate to you and omg thank you for all your comments everyone. I been for a ct scan today and my doctor, dr Williams said it was no better and inflammations were still high. I have started a certain diet s something something diet lol and I’m hoping that will help. Dr Williams has told me the next thing she would recommend its surgery and I was :o0 lol I don’t no why todo, life like this is poo and I’m sick of all the poo and pain etc etc xxx

  6. rjw April 11, 2013 at 9:17 am #

    Heather,
    Good-luck with your decision. If you have looked at the other strings on this site you may find people who have been faced with similar decisions. Some have gone the surgery route and some not wanting to do surgery have gone down different paths. Some on the alternative paths to surgery claim they have been successful. It is easy for any of us to say do this and do that but we are not walking in your shoes. If it were me I would change to the SCD diet. Add three table spoons of “REAL” Extra Virgin Olive Oil three times a day. Get a good probiotic and L-Glut (ask Bev) or look up GSL#2. Other strings talk about Aloe Vera. I would do all of this right away with the path of doing a Fecal Transplant. You can ask your doctor about it, some doctors offices do it as part of their practice to cure C-Diff. Studies are in place right now because there is a strong belief that it can have a big positive impact on some peoples IBD’s. This website is full of people who claim fecal transplant saved them when faced with surgey. Look at he different strings on this website. By the way in the RX category has your doctor prescribed any suppository? Like Canasa?

  7. Wendy
    Wendy April 11, 2013 at 10:15 am #

    Ugh, fecal transplant sounds so disgusting to me that I refuse to entertain the thought. Usually I don’t talk on this site, unless I’m feeling ill. I am in the beginning of an attack right now. I just bled and raced home from places that I tried to go to for a year before I was diagnosed. My daughter learned to play in the bathroom (she was two) and had all her toys in there because I just sat on the toilet all the time loading it up with blood and small squirts of poo. I refused to go to the doctor because I can’t stand them. When I finally went, the games began. They “cured” me or sent me into remission on prednisone and asacol. These drugs hurt my body and instead of poop issues I had joint pain issues and swelling. Two years after wrestling with drugs I went into another bad attack and landed up in the hospital. The great part of that is that I lost 20 lbs. I can’t stand the hospital. I was in there for a week (well, five days to be exact). I couldn’t stand it. They had me in a pretty serious floor where people were in serious trouble. I felt ridiculously healthy compared to them, but my suspicion is that they thought they were going to have to remove my colon any second. I drastically reduced the amount of time I could spend running after my two teenagers and my little daughter, but eventually I got better.

    I used Melaleuca vitamins, Chlorella, astaxanthine, spirunella, and a few other things. If I stop any of these things I get an attack. These are only supplements and vitamins though, so I have no side affects except my pee is quite a bit more yellow (darker yellow) from the vitamins and the chlorella gives me fish tasting burps for a while after. Small price to pay considering the option.

    I tried suppositories, and everything. Prednisone didn’t work very well when I was hospitalized. They gave it to me intravenously and still it took three days before I could see a difference. They loaded me up with a sugar drink up my veins as well. They also got my IV meds mixed up with someone else’s TWICE. I was the one who noticed both times and told the nurses. I can’t describe enough how much I detest the hospital. I so hope you don’t have to do it again and I feel so horrible for you having to be there during Christmas.

    I hope you are feeling better soon. The best thing that helped me was listening to myself. I would listen to the doctors but make my own decision. I inquired about having my colon removed and then when I said I decided not to and just try and take vitamins, the doctors said I should see a psychologist because I was scared of the operation. So I went to Mayo Clinic and they said I didn’t have to have an operation. So Ha. Proves to me that you should listen to your own body regardless of what the doctors say. I think doctors are focused on stopping the problem no matter what, whereas I prefer trying to work with my body.

    If it gets bad enough, I will remove my colon, but I will NOT remove it because a doctor threatened me with claims against my sanity or because a doctor told me to. I will do ultimately what I think is right for my body.

    • bev April 11, 2013 at 10:49 am #

      Fantastic post Wendy!

      My doctor deems me ‘crazy’ as well, because I went off the meds that were making me feel so terrible, and healed my colon with probiotics and L-glutamine. Yeah…I’m crazy…like a fox.

      Also, years back when I was really sick with UC, I got a bit ‘blue’ and ‘down’ and he said I should go on powerful antidepressants for it! I’m so thankful that I didn’t listen. I would probably be on them still, and most of us don’t REALLY NEED them, I don’t believe. When we are that ill, it a no brainer that we feel a bit depressed. I just exercised more and I was fine…especially now, that I’m not ‘sick’ with UC anymore. Duh!

      :)

      • Wendy
        Wendy April 11, 2013 at 11:59 am #

        Your post reminded me that at the beginning (before it was really even that bad) the doctor suggested anti-depressants for me too. He said, if I don’t get upset, I will be less likely to get an attack, so every time I feel upset coming on, I can pop a pill and I won’t feel upset and thus I won’t have an attack of colitis. To me, that was drugging my life. Why be alive if you are only going to muddle through it in a drug haze? I totally believe that some people need it though, but yeah, I think a lot get drugs that don’t and just need to live their lives. Thanks for letting me know about your doctor encounter. It makes me feel like I’m not the only one this ever happened to.

        • bev April 11, 2013 at 12:15 pm #

          Wow…too true.

          I know what you are saying…some people really DO need antidepressants…but I still believe that if we ‘moved’ more…a bit of exercise goes a long way. I’m sure I’d be on antidepressants now, had I never took up exercise. It’s literally saved me from that ‘drug haze’ of which you speak Wendy!

          :)

  8. Heather
    Heather April 11, 2013 at 3:53 pm #

    Sorry aint been in contact currently having a bad flare up, in so much pain and so upset and depressed. I have read Ur comments but cos of everything at the mo it’s not sinking in. Please bare with me I will read them again and get bak to you. Thank you so much for taking the time to comment xxx

    • Wendy
      Wendy April 11, 2013 at 4:08 pm #

      Oh don’t worry! It’s ok. You don’t have to reply at all. I hope you get better soon.

  9. Bethany April 12, 2013 at 4:56 pm #

    Hey Heather, no worries about responding to all of our comments. We’ve all been there and know how difficult it can be just to pick up a book much less go through reading and responding to things on the computer. I’m here if you ever need someone to talk to. Sometimes just having someone to just sit and listen helps a lot. Hope things improve soon!

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