Ulcerative Colitis Tips


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2 Years Of Having UC and Still Don’t Have Control, Will Surgery Have To Be The Answer

Jasmine with her baby

with my baby

Introduction:

Hi, my names Jasmine and i am from the UK, East Anglia and turning 20 soon.  I love spending time with my 2 year old little girl Sophie and seeing my family as well!

My Colitis Symptoms:

VERY bloody stools, painful cramping, bloating, gassy, diarrhea, tired and weak

2 Years Of Having UC & Still Dont Have Control, Will Surgery Have To Be The Answer Or Can I Be Healthy Again?

I have been diagnosed with UC since April 2010 when I was 17 and it took them months to first diagnose me as I was pregnant at the time, I was in hospital 2 weeks after giving birth and i was VERY ill at this point, they had to give me pints after pints of blood and lots of different drips.
My family was very worried at this point as i looked like death and was being sick too, they finally got me on a steriod drip and it started to kick in, at first i was going about 20 times a day and had very bad cramping pains, then it started to go down, But as soon as they took me off the drip and onto tablets i flared up again so was a little scared thinking the medicine wont work! But after my liver flaring up to it finally got control and i went home to my newborn was a huge struggle for me to get to grips what was wrong with me!
Now 2 years later I’ve had many flare ups and in and out of hospital with infections and being ill! Im now currently having a different sort of flare up as part of my colon is inflamed and they are finding it hard to clear it up as steroids don’t seem to be doing much and azathioprine don’t agree with me as it just brings my white blood cells down, the steroids have made my bones really weak so taking tablets for that too and i feel awful! its not the frequency of me going at the moment its the blood and seriously painful cramping and gas! they have now told me that i need to think of surgery and I’m really scared as its the last thing i want to do as my confidence is low already and they said i wont be able to have anymore kids with certain surgeries which is also a downer!
I have been really on my own these last 2 years and have never spoken to anyone that’s in the same situation as me until going on this site and I’m hoping to maybe make some friends and be able to relate to other people as it would really help!

Where I’d Like to be in 1 year:
Id like to have control of my UC and not feel a freak because i have it and feel healthy and have energy instead of feeling triple my age and to be healthy enough to have another baby :(
Colitis Medications:
Azathioprine hasn’t worked well for me, prednisilone has always felt like its the worst thing to be on most of the time and has awful side affects, Pentasa i have 8 tablets a day but cant tell what they are doing, i have also used enemas which seemed to help and pains i had.
written by Jasmine
submitted in the Colitis Venting Area

 




15 Responses to 2 Years Of Having UC and Still Don’t Have Control, Will Surgery Have To Be The Answer

  1. Polly
    Polly April 13, 2012 at 10:19 am #

    Hi Jasmine!
    I am so sorry to hear about everything that you have had to go through already!
    You have a beautiful baby, by the way :)

    You might want to check out this story: http://www.ihaveuc.com/no-colon-and-still-rollin/
    The writer of that story might have some more helpful information to share with you.

    My advice would be… if you’re really unsure about the surgery (and who wouldn’t be at our young age?), make sure you check out all of the other options that exist.

    I know there has been lots of news and break-throughs with fecal transplants recently.

    Hey Jasmine… I am sending you a giant HUG from across the pond!!! Hang in there!

    • Jasmine from England
      Jasmine April 14, 2012 at 2:27 am #

      Hey thanks guys means alot to me that you have taken the time to read my story …

      Polly- thank you my daughter is a big handful at the minute and i just hope she never ends up like me but i am trying everything i can as shes the main thing that keeps my hopes up.. HUGS back to you :)

      Katharine – i do take 8 pentasa and i take 4 in morning and 4 at night, i do hate taking them as they are big but i do also have it in a enema form aswell never do feel like they are acuali doing anything for me :/ oh what probiotic drinks??

      Peter – i do have blood tests regular as i am on azathioprine and my levels are low but the doctors say its not low enough for them to put me on anything but it always seems to be low and i always tell them how rubbish im feeling but they never seem to listen so not much i can do except eat better realy…

      Joy – I have been reading alot everywhere that people watch what they eat and i have tryed so hard to eat better but im such a fussy eater and dont like many things and with also being on a high dose of prednisilone i am always feeling hungry! but i have tryed cutting out simple things first that i know dont agree with me and its becoming tricky but i think i need to be more in depth with it and realy do it proply insted of tip toen around doing a proper diet haha….

      Thank you EVER so much every one has made my day and has made me feel not so on my own anymore :)

  2. katharine April 13, 2012 at 1:24 pm #

    Hi Jasmine,

    Sorry to hear about your troubles.
    I have UC & had it for 5 years now. It took me over 3 years to get it in remission. What worked for me I think was, I take Pantasa (Mesalazine) four times a day, but I changed from takng two in the eve & two in the morn. Now I take all 4 at once in the morning. I also take cod liver oil and super 8 strong pro-biotics. Try that. Let me know if you have more question
    Kathy xx

  3. katharine April 13, 2012 at 1:27 pm #

    Sorry, just saw you are taking 8 tablets in one day. Do you take them all at once? Big hug x

  4. PeterNZ April 13, 2012 at 1:44 pm #

    Hi Jasmine,
    Your tale is so similar to mine!
    I found some relief after 5 years of flare after flare and courses of prednisone by eliminating gluten from the diet (and I never eat animals). The stuff is pervasive so the first month is a little tricky but after a while you don’t even notice.
    My doctor has just prescribed me “methotraxate” as a long term approach to keep me off the pred. I haven’t taken any yet as the GF diet has enabled me to get down to 5mg pred so am holding off to see what happens over the next month. Perhaps this is something you could look at too? Sounds like a pretty full-on drug to me but worth consideration, I’m sure.
    I have also used “colifoam” with success.
    If you are feeling cream crackered all the time it might be an idea to look at the levels of iron in your blood and stored reserves in your body. Recently I had extremely low haemogloblin (90 odd) and practically zero iron in my body. This was confirmed by a simple a blood test and was treated by an infusion of iron to bloodstream.
    So still plenty of options out there as yet! Keep your chin up.
    Peter

  5. Joy McCormick April 13, 2012 at 2:44 pm #

    Have you tried adjusting your diet? I know some say it doesn’t make a difference but it sure has for me.
    I was doing absolutely miserable on meds– and they made me gain 30 pounds. I thought there was no hope for me and I would have to be miserable for the rest of my life. I decided I needed to lose that weight and tried several diets but they didn’t work. Then i tried a modified version of the Atkins diet. Basically I quit eating all forms of processed sugar all together.
    It sounds hard, and the first few weeks of getting your body through sugar withdrawls are hard, but after that it was and still is really easy! I eat very healthy, lots of vegetables, lean meats, and fruits and I feel INCREDIBLE. I have now been med free and in remission for almost a year and I have never felt this good since I was a little kid. I have so much energy and I’m so much healthier.
    It’s worth a try, and you won’t be losing anything by doing so. I SO wish someone had told me how much of a difference changing my diet could make sooner.
    You DESERVE to feel better. You don’t deserve to be miserable and you need to find a way to feel great so you can enjoy the time with your daughter and she will have your full attention on her and not you feeling crappy.
    Hope this helps. I’ll keep you in my prayers.
    Joy

  6. Blake April 14, 2012 at 10:17 am #

    Hey Jasmine,
    Sounds like life has been pretty miserable for you lately and I can’t help but to feel bad for you cause I have been there before myself. I’m 30 years old and I just had my colon removed last December due to UC. I just want to take a little fear out of the thought of losing your colon. I feel great, much better than I did with UC. If I had to do it over again, I’d still get that surgery. I may have tried one more thing though, I have been hearing a lot about the fecal transplant and you might want to look into that. It’s too late for me, but I’m happy where I’m at right now. I’m eating whatever I want (except gluten, cut that out a long time ago) working out like a madman and just feeling good. I have an ostomy bag until I get two more surgeries to complete a J pouch, but I’m hoping that will work out. If I have to live with the bag the rest of my life, its no big deal. I was taking bloody dumps 15 to 20 times a day pretty much all of 2011, there is no way I would go back to that life. I’m not trying to talk you into surgery by any means, but if that is what you eventually choose to do, I think you will be happy with it. Best of luck to you.

    • Jasmine from England
      Jasmine April 15, 2012 at 9:58 am #

      Heyy there thanks for your coment and i am happy to hear that surgery has worked for you as i have noticed alot of people have had alot of sucess with it but i must admit im still in shock on how people cope with it and i think everyone should deserve a medal for it :)
      I have never heard of the fecal transplant but ill be having a look as there is a few things out there that i have never heard of realy but im just trying to sort my diet out mainly as i know that plays a big part in it.
      i still dont get the difference from a ostomy bag and a J pouch i thought they was all pretty much the same but just different names i suppose haha!
      x

  7. Blake April 15, 2012 at 7:37 pm #

    Yeah, it’s pretty confusing. I’ve had to learn a lot. Basically, J Pouch surgery is done in either 2 or 3 steps or sureries. I’m doing 3 steps, so I’ll tell you how that works. Step one, they will completely remove your colon (which is the same thing as your large intestine). At this step they also have to give you a temporary ileostomy. Basically, that means that the end of your small intestine will be poked through your abdomen and out your skin, near your belly button. That’s where you wear the ostomy bag to get rid of waste. This is the thing that nobody wants to deal with and seems so gross, which it is at first. I still don’t like looking at my intestine hanging out when I have to change bags, but that is what has made my life so much better too, so its a tradeoff. The 2nd step, which I’ll be getting in June, they remove your rectum and they create a J Pouch. A J Pouch just means they extend your small intestine down to your anus, create a J with your intestine. The “J” basically will be where your poo will be stored until you can make it to the restroom. You then have to wait a couple more months for the J Pouch to heal till you can get the final surgery where they hook your internal plumbing back up, you get rid of the ostomy bag, and can resume normal dumps. Normal as I understand is about 6 times a day after J Pouch sugery, which still seems like a lot, but it’s supposed to be easier to control. You no longer wear an ostomy bag after you are finished with all your surgeries. There are complications that can happen of course with J Pouch surgery, but there are with every surgery so what do ya do. I’m just hoping everything goes smoothly, so far so good.

    • Jasmine from England
      Jasmine April 16, 2012 at 2:26 am #

      ahh im now with you haha … well j pouch seems to be a more normal surgery and less hassle i suppose but with risks of surgerys i mean what more can go wrong that already hasnt ey :)
      i think youve done very well and i hope all the best for you and hope everything goes smoothly for you, hopefully i can get control of my flare up and be ok :)
      x

  8. Jasmine from England
    Jasmine April 17, 2012 at 2:59 am #

    I thing i will ask is how on earth can people tell what upsets them? i can understand if i have like a milkshake and it would go right through me but i wanna be able to sort the little things but i cant tell as im either in pain all the time or its way after ive eaten something and i dont know what has upset me and its driving me mad! feel like i cant eat anything :(

  9. Polly
    Polly April 17, 2012 at 3:47 pm #

    Hey Jasmine,

    I am (hopefully!) starting to get to the end of my flare-up. (I’ve had a couple of “good days” in a row now, and I’m starting to get cautiously optimistic.)
    Like you, I felt like I couldn’t eat anything. (And I learned that dairy REALLY didn’t agree with me during the flare up.) My Doc suggested that I eat sweet potatoes and almond butter… plain sweet potatoes (peeled and boiled, with a little olive oil) and almond butter by the spoonful. That food sat with me a million times better than anything else I had tried up to that point. Also, the crazy stomach pains disappeared. So that’s my advice: sweet potatoes and almond butter. If you can find organic, I’m sure that’s better, but if you can’t, that’s OK too. (I have been eating sweet potatoes and almond butter for 3 weeks straight.)

    I also talked to my Doc last week (not my GI) and I saw him yesterday. He told me about a study in the BMJ (British Medical Journal) about Vitamin D and how it can be used as an effective anti-inflammatory. So according to the article, a 175 pound person can take up to 160,000 IU of Vitamin D for a week when sick. I am about 120 pounds, and he has me on 100,000 IU of Vitamin D a day. It seems to be a miracle… I am now on day 4 of this high dose of Vitamin D and I’m doing better than anything else I tried during this flare. (I started to see results on day 3.) (Of course, I have to be careful… I can’t go around saying my flare is going to be over soon because that’s just bad karma or whatever…)

    My Doc says you can’t overdose on Vitamin D, so that’s good too, because then there’s less to worry about… also, Vitamin D is cheap… so that’s a HUGE added bonus…

    So, since things have been going so well with me and the Vitamin D, I just want to post it all over this website anywhere and everywhere I can… TRY VITAMIN D…

    Let me know how it goes, Jasmine.
    As always, lots of hugs!

    • Jasmine from England
      Jasmine April 18, 2012 at 12:26 pm #

      Hia, wow i think its great that things are going good for yourself :)
      I have cut out main sorces of dairy like my beloved cupa teas and yogurts and chocolate :( and i have noticed a little difference but its only been a few days and i am having to be careful as im also being weened off my prednisilone and im hoping my diet and excercise will help me become better so i can get off the awful things!…
      got an endoscopy appointment soon for them to check how far the flare has gone and hoping i will get good results!
      and with the vitamin D i shall give it a go i did buy some vitamins the other day but that was more for energy and my bones due to the bad side affects of steriods…

      much love Jasmine Lots of hugs xx

  10. Jasmine from England
    Jasmine April 19, 2012 at 12:54 pm #

    Hey there i do have a random question but how do grapes affect you? as i been told fruit with skin on isnt good for your tummy …. i have been cutting out dairy out of my diet as much as possible and its making abit of difference for me and drinking natural juices too has made most of my tummy pains go away but i still feel like theres something else i need to do what do you reacon?

  11. Polly
    Polly April 20, 2012 at 10:44 am #

    Hey Jasmine,

    I haven’t had grapes in a long time, so I can’t help you out there.

    My doc recommended that I drink cabbage juice. Maybe you want to give that a try? I put 1/2 a cabbage in the blender, added a little water, and blended it up. It doesn’t taste great… but you could try that.

    Also, my Doc told me about PSYLLIUM… it’s a powder that you mix in with water or whatever you’re drinking. I guess it coats the colon and helps the mucousal lining and is supposed to sooth your insides. When you mix the stuff in, you have to drink it pretty quickly, or it becomes gelatinous!

    I just wrote about Psyllium on another post: “No end in Sight”

    Take care, hugs!

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