Ulcerative Colitis Tips


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What’s Happening: Dashing to the Toilet

Hi There I Have UC Website Readers,

5 weeks ago I began to experience urgent urges to go to the toilet, but when i had reached the toilet to open my bowels it was just blood that would be released (quite alot)! There were times when i couldn’t reach the bathroom in time but luckily i was at home. A few days later i was suffering from diarrhea as well as blood loss! At this point i knew something was seriously wrong so therefore went to visit my GP who took some blood tests; the day after the blood tests i flew abroad and that’s where my story begins.

The first few days of being abroad i was still experiencing the diarrhea and anal blood loss then all of a sudden without any warning what so ever i was eating breakfast in the hotel restruant when i had severe stomach cramping with a violent urge to go to the toilet. From this point onwards this was my continuous pattern throughout the 2 weeks of my holiday. The pain and toilet visits restricted me to my hotel room while my family went out. I was told by my family members that it’s not good for me to stay in bed all day and that i should make the most of being abroad! Well hearing those words with the way i was feeling didn’t go down well at all as i felt myself snapping at people as no one possibly understood what i was experiencing, i was feeling very depressed and isolated; all i wanted to do was come home, get my test results, take some antibiotics and feel better.

The evening i got back into England i realized that i would need to quickly nip to the supermarket to get bread and milk (what a nightmare that was)!!! Half way through picking up my items my stomach started to cramp and i needed to find a toilet immediately….as i reached the toilet i felt a little relieved until to my HORROR there was a huge sign saying OUT OF ORDER! At this point I wanted to cry, then a worker must have seen the distress in my face and told me that the toilets had been moved outside so i made a dash for them. All i was thinking was i have one day until my test results then my doctor will sort all this out for me.

The day finally came when i was able to collect my test results but i wasn’t told what i expected to hear. I was told that there was something showing extremely high in my blood (i can’t remember the exact term) but his diagnosis was Ulcerative Colitis, i had no idea what this was so he advised me to type the condition into Google and have a look, which i’ve done and to my horror the condition sounds worse than i initially thought. I have a hospital appointment the beginning of November for a colonoscopy to confirm that it is Ulcerative Colitis, in the meantime i am extremely ill with:

Constant toilet dashes especially after eating or drinking
Stomach cramps
I’m so bloated I look pregnant
Lower back pain
Itchy eyes
A loud gurgling sound in my stomach

Before all of this i was always out socializing with people and now i can’t go anywhere through fear of me needing to dash to the toilet. I feel very depressed and tearful as i have no idea how long i will have to put up with all these symptoms, i have read so many different stories about the medications and it scares the life out of me. I really don’t know what to do or how to handle what is going on inside of my body.

Submitted By Rainy in the Colitis Venting Area




11 Responses to What’s Happening: Dashing to the Toilet

  1. .D. October 9, 2011 at 8:41 am #

    I would recommend to stop eating solid foods, Get yourself on a juicing diet, and keep yourself hydrated, after 3 days of juicing my symptoms that where similar to yours are now going away slowly. Also isolate yourself from stress, and keep your mind happy watching comedy, once you have energy practice yoga, not the extreme kind just beginner lessons, Find a balance. I had to stop going to work and stay home a few days for this to work out. Again sacrifice, but its the best and right thing to do for your health and to get your life back.

    • Rainy October 10, 2011 at 9:28 am #

      Thank you D, i have realised that the slightest bit of stress hits me hard so i’m teaching my brain to think of positive things.
      I’ve been living on ribena and it seems to be helping as i’m not needing to run to the loo straight after drinking it like i have been with water.

      Rainy

      • JamieIsLame
        JamieIsLame October 14, 2011 at 5:43 am #

        don’t rely just on ribena!
        I did the exact same thing when I was undiagnosed but the vitamin c in ribena can actually cause your bowel to function faster than normal, causing more blood loss.

        I suggest you use solpadeine for the pain, because they contain paracetemol (which will reduce fever, which you’ll probably have) and Codeine, which slows down the bowels fuction.

        I really hope it all works out well for you :) don’t listen to drug horror stories, everyone reacts differently! and don’t be afraid of whats ahead, because it’s no-where near as bad as the disease.

        Good luck!

  2. Johnny Drama
    JohnnyDrama October 9, 2011 at 9:42 am #

    Hey Rainy,
    Reading your story put me back to last December/January when I went to the exact things you did…
    Pretty much everything you said happened to me, and yes the pure blood was the worst, when I would run to the toilet and just blood would come out… Im not sure if you had a colonoscopy yet, but if not you should probably get one to know exactly how bad you have it… Taking that drink the night before that cleans you out is probably one of the worst experiences of my life…. I still remember how I could hardly walk out my car the day of my colonoscopy and after the colonoscopy I practically needed a wheelchair…. MY colon felt like a a piece barbwire was shoved up their, but that stuff really irritates your colon, but cleans you out at the same time…I DONT RECOMMEND ANTI-BIONICS
    I TOOK FLAGYL AND CIPRO… THAT MADE MY SYMPTOMS WORSE… I recommend you start the SCD asap and get on your basic sulfate pills…. I take lialda… three in morning…
    When I started the scd diet, I ate lots of eggs…… boiled,scrambled,sunny side up…. you will grow yo love eggs….
    I recommenced boiling and blending all your fruit and vegetables like D was saying above…
    D, knows his stuff… I Recommend cooking some apples up in the oven…they melt in your mouth,,,put some honey on them, I ate alot of lettuce,which doesn’t seem appetizing…. but everyone is different and everything reacts to their body differently…. SCD diet is a must, its tough but give it a shot…
    http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm
    … Try keep your mind of the UC… go outside or read some magazines and watch some eastbound and down….good show… will keep you laughing…trust me
    DOont let this disease get to you… the more stress the worse it will be, you just gotta drink plenty of water, and find a peaceful place outside and just try to realize that shit happens, and it aint your fault…
    Id email Adam if you got questions… hes bad-ass, he pretty much kept me through the pain, when I had no one to talk to….. THIS SITE is where your family…
    I ate alot of chicken breast… i usually used my rotisserie…
    Overall try to avoid sleeping on your left side at night, go outside and soak up some sun, stay hydrated… and just relax… life throws curve balls, but you gotta remember.. theirs always someone who has is worse… and you gotta realize once you get it under control, you could be symptom free for a long ass time….
    JOhnnyDrama

    • Rainy October 10, 2011 at 9:45 am #

      Hi Johnny

      I assumed that i was booked in to have a colonoscopy on 8th Nov (that was the earliest appointment) but now receiving my confirmation letter from the hospital it looks like it may just be a consultation with a specialist….is it normal for doctors to be quite laid back about this illness?
      I am strongly considering the SCD diet as the medication would be the second option for me.
      It’s funny you mention the eggs as i have practically been living on them daily, scrambled, boiled, poached even fried.
      I will try the stewed apples. Also i have swapped sugar for honey as my body seems to respond better to it. It’s bizzare because now i find myself questioning what i can eat and what i can’t, i certainly took food for granted in the past, i’ve always been a huge food lover eating what i want when i want.
      Will i ever get back to the stage of being able to eat what i want or will i always have to be cautious due to flares?
      This site is fantastic without it i don’t know what i would have done….and Adam is an amazing guy, so helpful and supportive. I appreciate everybodys response, this site certainly is our family.
      How are your symptoms at the moment?

      Rainy

  3. amos October 9, 2011 at 4:34 pm #

    Rainy,

    Ditto on everything JohnnyDrama said about starting the SCD and getting on a 5-ASA (I take 4.8G of Asacol a day or 4 tabs three times a day in addition to SCD and other meds/supplements). The urgency you are having is called tenesmus and is quite common with UC. Google it if you like. Usually it occurs when the lower most part of your colon is inflamed (proctitis). For many people (myself included) flares often start in the rectum/sigmoid colon and work there way up so it would be good for you to get this flare under control before you end up hospitalized with a really bad pancolitis flare (what guys like myself and Adam have suffered before). Steadfast SCD should help but if you are really flaring (and it sounds like you are) I would get some suppositories/enemas to help with the tenesmus in addition to a maintenance 5-ASA. 1000 mg Canasa suppositories are the mesalamine 5-ASA you can try on a daily basis or you can try the 25 mg hydrocortisone suppositories as they are cheaper. You could/should also try the Rowasa enemas or hydrocortisone enemas if it is part of the left side of your colon rather than just your rectum. If these don’t work because your entire colon is inflamed or because the flare is so severe I would recommend trying one of the bigger gun drugs like prednisone for the short term and/or 6-mp, remicade, or humira for the longer term. Stepping into the big gun arena requires some serious thought on your part though. Once you walk down this path you have to balance the risk between flare and overall toxicity/med side effects though as these drugs are not benign and they are also not cheap so I hope you have insurance. If you don’t have insurance or are concerned about side effects I would (in addition to religious SCD)try alternative supplements (fish oil/borage oil, boswellia, N-acetylcystiene, berberine, nicotine gum), probiotics (I really like Jarrow’s saccharomyces boulardii but other ones like sustenex, pearls, or VSL3 are also good). You can also look into alternative therapies as I have such as a fecal transplants or helminths as some people have had great success with them. If you want to save your colon and you want your health back bad enough I think you will be able to get there but it can be a constant struggle for many. Good luck pal. We’ve all been there.

    • Rainy October 11, 2011 at 1:42 pm #

      Hi Amos

      My symptoms seem to have slightly eased, instead of the stumach cramps when needing the toilet i get a weird sort of stumach ache, also i tend to be worse at night, sometimes needing a toilet visit every hour. It takes a while to fall asleep as it is then i’m woken an hour later, then back to sleep, then woken again….it’s got to the point where i ask myself if it’s even worth going to sleep as i’m getting very little at the moment. I don’t feel tired during the day what so ever which is puzzling me if i’ve only surviving on 3 hours sleep a night.
      I’m from England so luckily all our medicines are paid for….so if the worst came to the worst and i needed multiple tablets then it wouldn’t be a problem. The government over here tax us so much on our earnings, but that tax goes into the health system so i suppose it’s only right they look after us….the greedy swines!
      Sorry gone off track abit there!
      I’m slowly introducing small meals into my diet so i can get a feel of what agrees with me and what dosen’t…..i just want to beable to eat normally as i love my food so much.

      Rainy

  4. Hopskotch October 9, 2011 at 6:23 pm #

    Good advice from everyone. I’ll just add that it won’t be as bad as it is now forever. And don’t get overly scared of the meds. Most people respond well to 5-ASA maintenance drugs like Asacol. I’ve had UC for 15 years and Asacol mostly keeps it in check, with no side effects that I’m aware of. Though flaring sucks, it’s only occasional for me; when I flare I have to take some other thing for a short time and then I’m OK, usually for years. Diet modification will help too, especially while you’re flaring. I don’t eat much solid food at all during a flare. Many have had success with SCD or some form of it – your body will let you know what’s right for you.

    Sorry you have to wait for the scope before the doc will give you the medication I guess… that just happened to me during my current flare; I know it’s frustrating and stressful. I ended up just phoning the place every two days until they had a cancellation… not sure if that will work for you, but the sooner you can get diagnosed and start treatment, the sooner you feel better physically and psychologically. Hope you feel better soon!

  5. Peter NZ October 9, 2011 at 7:01 pm #

    All true. My sister got it like you. Only once though! Was right as rain after a few meds and is still fine several years later.
    Doctor was probably looking at inflamatory markers in blood test (C-reactive protein or some such). The colonoscopy will diagnose better.
    It won’t always be like this.
    Good luck,
    Peter
    P.S. Colonoscopy can be performed under general anestethic, or in my case, awake, but they have a line in your hand and they inject 2 types of drugs as required – worked at treat for me with just a little discomfort.

  6. Blake October 10, 2011 at 4:43 pm #

    Rainy,
    Don’t feel too bad. I almost crapped my pants in a grocery store twice in one week. Why is it that you can feel really good with this disease one moment (so good you say let’s go to the grocery store for a couple hours of shopping) and then next you’re bursting to get your pants off your waist. The first time I had to wait for some jackass to get out of the toilet. I was getting violent in my head and was really thinking of ripping the door open and throwing the poor guy out. The next time I went to use a bathroom at another grocery store a couple days later and it looked like a gang of ulcerative colitis sufferers used one toilet and didn’t flush for weeks. There was crap on the floor, on the walls… everywhere. The funny thing is I was almost about to just go on the floor and say f*** it! But I didn’t. Anyway, just trying to cheer you up a little bit. I’m sure most of us on this site have pretty funny stories similar to this. Of course, they’re not funny at the time of impact, but poo humor is always appreciated.

    Blake

    • Rainy October 11, 2011 at 1:51 pm #

      ha ha, Blake you really have cheered me up, yes poo jokes are funny and it’s something that we can all relate to.
      In my story i mentioned that i was at the supermarket when that URGE happened…well when i was finally directed to the toilet there were 2 teenage girls in there standing in front of the mirror messing with there hair, talking and laughing….as soon as i walked in and saw them my heart sank, i was thinking get the hell out of here before i completely lose it. Luckily they left after 20 seconds (that felt like an eternity) when you’re trying to stop yourself from crapping yourself.
      I ‘ve come to realise now just how much i hate public toilets…..nothing beats your own.

      Rainy

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