Ulcerative Colitis – A Life Changing Condition

I Have Ulcerative Colitis.

Here is My Story:

I’m a 32 yr old woman. I’ve always loved food. All kinds. I’m Mexican so spicy food is a plus for me. Over a month ago I ate something that made me sick. It was Friday and started with diarrhea, when Sunday came along and my situation worsened (blood in my stool) I went to the ER. They suspected a bacteria and gave me medicine for it. No improvement. I started to have these attacks (cramps) and nausea. I would eat anything, or just drink plain water and my stomach would hurt. I went back to the ER the following Saturday and they suspected an ulcer caused by a bacteria. They gave me more medicine and sent me home. No improvement, on the contrary. My hemoglobin levels were decreasing. I went back the following Saturday (yes, always on Saturday because I didn’t want to miss work) and they decided to do an X-Ray Barium Enema. I had it done on Tuesday, it was so uncomfortable! According to the results it was either Crohn’s disease or Ulcerative Colitis. They ordered a colonoscopy. I finally had it done on July 9 and they confirmed UC. They couldn’t go all the way through my colon because it’s very inflamed. The damaged part is from the descending colon all the way to the rectum. They put me on Asacol (Mesalazine) 2-2-2 for a month, and if that doesn’t help me (which I don’t think it is) then they will have to put me on corticosteroids but I’m afraid of the side effects.

Now I have a severe case of hemorrhoids. I dread the moment I have to go to the washroom. I feel like I’m tearing inside out plus the colon pain plus the impulse to want to throw up right there. It’s horrible. The doctor prescribed cream to numb the anus area. But these attacks are so unexpected that I don’t always know when to apply the cream in advance.

Along with this treatment I started a homeopathic treatment as well. I know it takes longer but I’m really desperate. I’m watching my diet big time: no dairy, no spicy food, no legumes, no alcohol, no caffeine, no chocolate, no acidic fruits.

I just want my life back. I just want the remission to get here. I don’t want to leave the house because I need to be close to a washroom. I know a lot of people have had it worse than me, that’s why I don’t want to complain. I just wanted to share my experience because I know that out there, there are people who understand what I’m going through.

I don’t know what I would do if I didn’t have the support of my family. And I try to stay calm because stress just makes it worse. But it’s not easy. I had to quit my job and move back to my parents’ house. I’ve always been very independent so this has been very hard on me.

Thanks for reading.

My Current Medications:

Mesalazine (Asacol) 2-2-2

Diosmin/Hesperidin (Daflon 500M) 2 per day.

Lidocaine + Hydrocortisone (Xyloproct) cream

*This story was submitted by Anieskassell in the Colitis Venting Area


13 thoughts on “Ulcerative Colitis – A Life Changing Condition”

  1. Hi!
    I’m really glad you posted on the site. Your story is one that I think a lot of can empathize with. There is nothing worse than the fear of not being able to leave the house. From someone who has gone through this, my trick has been to really plan ahead – always carry an extra pair of pants with me as well as small packs of tissues (kleenex), also if I have to be somewhere at say 8 a.m. – I get up at 5 a.m. so my body can hopefully get through all of the morning attacks before going out.
    As for the hemmorhoids – yes very horrible. I found the cream to be useless. Frankly – I stopped wearing underwear – I found the underwear to be very uncomfortable. When I had them last, I was in hospital and the steroids I was on helped clear up the hemmorhoids. Sitting on ice packs can help as well as baths with epsom salts.
    As for diet – this is completely personal – everyone is different. I’ve had time where all I could eat was chicken broth and melba toast – not appetizing but it worked.
    I’ve been on Asacol for a while now and it is working – but I don’t know if it will help you get out of a flare. Steroids are not fun but they can help get rid of a flare – you just don’t want to be on them for the long-term – there are a lot of steroid options (I’ve never been on Prednisone – have been on others and experienced no side effects).
    All this to say – things will get better. Know that you have a big support group here and ask any questions you have. Let us know how you’re doing.
    take care,

    1. Thanks a lot for responding and for the tips, Vicki!

      Fortunately the bleeding stopped. But the hemorrhoids are still there, full blown :( But I think I’m finally learning when to apply the cream so that when I go to the washroom the area is somehow numb.

      I thought the Asacol would help with my current flare. Unfortunately, today I made the mistake of eating mamey fruit. I almost immediately started with cramps and now my colon feels tight. I promise not to eat mamey again!

      It is such a relief to feel the support of all of you, really.

      Kudos to http://www.ihaveuc.com!!

  2. Thanks for sharing, your story is familiar and all of us with colitis can relate. From experience, sitz baths will help, watching what I ate helped some. For the nausea, ice chips helps some. For relief if you can’t stand it anymore, the steroids help, even a short course of 10 days….
    Take care and good luck to you.

    1. Hello Chris, thanks for the tips. I will ask my doctor to put me on the steroids, even if it is for a little while, anything to diminish this condition!

      Good luck to you, too!

      Take care!

    2. Thanks a lot for the tips, Chris! I will ask my doctor to put me on steroids even if it’s only for a brief period, anything to diminish this condition!

      Good luck to you, too.

      Take care!

  3. OrdinaryWorldWhereRU

    I agree with taking the steroids if they help you achieve remission. I can also empathize with the gripping stomach pain when anything hits your stomach. I found that I couldn’t eat anything that was any colder than room temp. I managed to eat chicken breasts, in a tiny quantity, that was extremely moist and potato water when I was in the throws of a bad flair. Anything else caused more pain – lots of it. As my doctor explained to me, I should be more afraid of the IBD than the meds and I agree with him now based on experience. I specifically asked him if food choices could put me into remission and he said no. But once in remission, good food choices are helpful. I chose to believe him based on my personal experience but everyone is different. My doctor didn’t leave me on steroids for long and refused to repeat them again. I asked for a RX for the big H and it has helped but it took a long, long time. I also changed tissue paper as I found some only made it worse. If possible, wet the tissue paper before using. It is less harsh that way. I hope you feel better soon. I am sorry for what you have been through and are going through.

  4. Thanks a lot for your tips! It’s a shame that we can’t achieve remission just by changing our eating habits. I’m eating chicken soup most of the time with corn tortillas. I tried lactose-free yogurt a couple of times and my stomach took it well. But last night, when I found myself hungry and I had one, well, let’s just say that I couldn’t even finish it. My stomach complained as soon as it passed through.

    I’ve heard that with this condition we have to eat smaller meals and more often. Is this true? How bad is it to stay hungry? Plus, should we stick to the 8 glasses of water per day or the more the better? To be honest I’m drinking very little water.

    I forgot to mention that my doctor has me on Senokot (laxative tablets). I thought this was counterproductive but he says that because my colon cannot process the food properly that it needs the help of the laxative.

    I’m only using baby wipes when going to the washroom. I think the toilet paper contributed to my hemorrhoids.

    Thanks for your good wishes. I hope that you’re doing well. I assume that you’re currently in remission. If so, are you still on any medications right now?

  5. I really feel for you here. Yes, you must keep drinking – ALL metabolic processes in the body take place in water, including natural pain relief. It also makes your stools softer and plumper. You might find the SCD helpful – you really must avoid spices, even though you were used to them. You could stop using toilet paper altogether and follow this method instead: after passing a stool, waddle to the sink (keep your knickers round your ankles) and wash your hands as normal. Then soap up your right hand and wash carefully around your anus, the piles, etc (don’t go near your vagina or urethral duct). Rinse your hands off, and fill a 1-litre jug with warm water. Waddle back to the toilet and rinse yourself off, using your right hand to ensure that every trace of soap is gone. Pat dry gently and apply a soothing cream like Sudocream if it helps. If your sink is close enough to the toilet, you can do all this while you sit on the toilet. HTH and good luck. :)

  6. Hello Trish! Thanks a lot for the tips. I’m starting to drink more water.

    I will see my doctor today and ask him to put me on the corticosteroids. I really need to put this flare up under control.

    I’ll keep you guys posted!

    Take care :)

  7. Hello ! I can empathize as well with your story. Mesalamine didn’t work for me in my first flare, so I went for prednisone, I was so desperate and wanted to stop having thos horrible ”accidents”. I would not leave my house except for work, and I even got put on sick leave because of my symptoms. With the prednisone I went on remission almost immediately, hell I even got almost constipated. But knowing I could not stay on this drug for long, I started the SCD diet too. I tapered off prednisone, now I take Masavant 4.8 g a day, Fish oil, probiotics, a multivitamin and continue the SCD diet. Right now I feel fine on most days. The only major side-effect I got from prednisone is hair loss (2 weeks after I had finished taking them) Good luck to you !

  8. Hi! How long did you stay on the Prednisone?

    My trips to the toilet weren’t that often anymore, the nauseousness was gone, but my colon felt soooo tight and the blood that had stopped for couple of days came back so on Tuesday afternoon I went to see my doctor to beg him to put me on the corticosteroids. He did (Prednisone) 5 mg in the morning and 5 mg at night. He wanted to start with the smallest dosage and see how my body responds. So I took my fist tablet of Prednisone on Tuesday night, 8:45 pm.

    Yesterday I had a great day. The knot in my colon loosened up almost immediately. I stayed home doing stuff but felt UC free!!

    And now, I’m back. Back to the toilet. I’m literally typing this from the washroom. Let’s see, it’s exactly 11 minutes before 6 am (Mexico time) Thursday. I went to bed at 2 am after a late trip to the washroom. Ok, I didn’t take my Prednisone at 8:45 pm sharp. I took it about an hour later. Do I really have to be that anal (ha! more?) about the intake time?

    My colon woke me up at 5:30 am with bubbling noises and with that familiar (too familiar I should say) need to go to the washroom. So I went (like I had a choice) And now, is this nauseousness I feel? Is the UC causing it or the lack of sleep?

    6:07 am. I really want to go back to bed. I promise I’ll take my Prednisone medicine at 8:45 am.
    I read that the bug in the gut will try to fight back the corticosteroid worsening the flare. Even though I felt great I watched my diet. I’m too scared to take any chances with food. Is my bug already fighting the Prednisone? Come on!! You only gave a break for a day!!!

    6:18 am. I think it’s safe to get up and lay in bed for a while. And to think that I was already excited about looking for a job….

    Ok… inhale, exhale… happy thoughts. I’m seeing my doctor on Wednesday for a follow up. I’ll let you guys know how that goes.

    6:25 am. Still sitting. I’m hungry. Please, stomach, not right now!! I just want to sleep! :(

  9. I stayed on them for 9 weeks, started at 50 mg a day for a week, then 40 for another week, then decrease by 5 mg for the following weeks. Maybe 10 mg is not enough for you right now, talk to your md about starting at a higher dosage and tapering like me and many others did. I’m pretty sure 10 mg on the first week wouldn’t have been enough for me to fight all this inflammation – like…incontinence… it meant I was badly inflamed. But maybe there’s a reason your md wanted you to try a low dose first.

    Please, do let us know how it goes, hope tomorrow’ll be better for you, sending good vibes your way ++++++++

    1. Thanks for your response!!

      The 10mg a day of prednisone have worked for me!! I’m so happy… and a little bit nervous. Today is my last day taking it (just 1/2 a tablet: 2.5 mg)

      The bleeding stopped. The diarrhea stopped. The abdominal pain stopped. I feel like my old self again! So this is what remission feels like! :D

      The only thing left is a hemorrhoid. I’m no longer using the cream for it (Lidocaine + Hydrocortisone (Xyloproct) cream). My doctor recommended to dip my butt in ice cold water to bring down the inflammation and, believe it or not, it has worked great!

      Let’s see what happens once the Prednisone wears off. I’m watching my diet and I’ll keep watching it. I would be lying if I didn’t say that I’m a little bit scared. My main concern is: How long will the remission last? No one knows for sure. I guess I just have to keep on taking one day at a time.

      I’ll keep you guys posted. Take care!

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