Ulcerative Colitis Tips


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UC is Ruining My Life, I Want to Feel Normal Again

Nikole fullIntroduction:

My name is Nichole. I am 23 years old. I am a toddler teacher at a private school. I am going to college and studying elementary education, I want to be a kindergarten teacher. My boyfriend and I have been together for 5 years.

Some more about me:

I live in the US and am from Pa. I love to hang out with my friends, take pictures, watch movies and laugh.

Symptoms:

I am currently experiencing the worst pain i’ve felt in my life. My stomach cramps have become unbearable and pretty much have me on the floor in pain. I am having blood and mucus in my stool…well what stool? It’s basically all blood and mucus. I am in and out of the bathroom about 20+ times a day. It is really starting to take a toll on me mentally. I feel like i will never be my normal self again and honestly that is depressing. I constantly have to cancel plans because I just am exhausted from the pain and in and out of the bathroom.

UC is Ruining My Life, I Want to Feel Normal Again

I’ve had Ulcerative Colitis for 2 years…first time I went to the GI for this I was told I had hemorrhoids. 2 years later I go to another GI, have a colonoscopy done to find out I have a mild case of UC. I was frightened because my mother had colon cancer, and my uncle has had colon cancer. I am pretty much convinced I WILL have colon cancer at some point in my life.

UC has made my life very difficult..I can’t go anywhere without having to run to the bathroom. I work full time and I’m always tired from constant trips to the bathroom. It just seems like it’s never going to end and I will never be my normal self again. I forget what it feels like to feel “normal”. Right after I eat a meal, you can find me in the bathroom. After all the bathroom trips and pain you can find me falling asleep on the toilet because i am so tired….I’m 23 years old and my friends want to go out and do all this fun stuff and I always have to cancel or not go because I’m nervous about having a flare up. I feel like for the past 2 years i’ve had this terrible flare up that hasn’t gone away or gotten better at all. It’s sad I spend most of my time in the bathroom. I love the support and understanding I get from my boyfriend and family. I just cant wait for the day i feel normal and happy again. This disease has really taken a negative toll on me physically, mentally, and emotionally. I’d love to know what other UC’ers do and think to stay positive when everything seems to be so crappy (no pun intended) Feel free to let me know!

Medications:

I am currently on LIALDA. I take 2 tablets a day. I’ve been on this medication for a week and have not seen an improvement, I am actually feeling a lot more wore down and tired.

written by Nikole

submitted in the colitis venting area




22 Responses to UC is Ruining My Life, I Want to Feel Normal Again

  1. Pamela August 6, 2013 at 8:10 am #

    I know how you feel! I teach 7th grade and I coach junior high and high school. The teacher across the hall knows if I knock on his door or send him a text – I am having UC issues. My body has gotten so out of control that last year the hospital gave me 4 pints of blood and it was just POURING back out of me (through ‘stool’). Steroids have done well with my body other than the fact I gain weight, but if it keeps me out of the hospital, I am okay with that. I am also on Asachol HD (2 pills 3 times a day). Don’t get discouraged! I went through 3 specialists before I found “the one”. Wishing you the best and praying that you find what works for you. I have found that routine routine routine keeps my body sane! Best of luck and if you need an ear to gripe to – I am here!

  2. Barb August 6, 2013 at 8:14 am #

    Hi Nikole,

    Sorry to hear about your flare. I have been dealing with UC for 15 years now and I to am from Philadelphia, PA I could recommend some great doctors for you. I am surprised that your doctor did not put you on a steroid. Are you still bleeding and having symptoms?

    • Nikole
      nikole August 6, 2013 at 1:39 pm #

      yes please share any good doctors!! thank u…i am still having the problems i was before and ive been on lialda for about 2 & 1/2 weeks now! I am from the philadelphia area as well!

      • Barb August 7, 2013 at 7:28 am #

        I go to Dr. Pilchman he is at Aria Health – They are located on Knights Road. Northeast Philadelphia. There is also Dr. Braden 215-632-3500 (there are like 14 drs there) if you call for an appointment you may have to wait but if you tell them you need to get in ASAP and tell them what your are going through. Honestly please make sure you are staying hydrated…..Lots of Gatorade,water,bananas, and potatoes they give lots of potassium which you will need… after being hospitalized 3x from dehydration for the months of Feb and March I know first hand on how to hydrate yourself.

        Start taking a probiotic every morning on an empty stomach you can order on line or check at Harry Natural Store on Cottman Avenue. I take Ultimate Flora and take 2 tablets of Lglutamine. You can get them there too or Stans Health Store on Frankford Avenue.

        Here is my email if you have any other questions – barbbque17@comcast.net

        Hope all this information helps you.

        Barb

    • PeterNZ August 6, 2013 at 2:34 pm #

      Spot on Barb. Good dose of prednisone required.

      • Barb August 7, 2013 at 7:30 am #

        Yes my doctors has put on prednisone multiple of times and it does work………Side effects suck but they are life saving =)

  3. Stephanie August 6, 2013 at 8:32 am #

    Nikole,

    I’m sorry to hear that you’re having such a rough time. I went through some similar stuff when I was in college and hated having to miss out of stuff because I wasn’t feeling well. It would definitely be worth talking to your doctor about some other medications. Steroids suck, but they can be totally worth it to help get your symptoms under control. You always have the option of finding another GI if you don’t feel like yours is listening to you or being as aggressive as you want to be. Good luck! Hope you feel better soon.

  4. Angela August 6, 2013 at 8:59 am #

    So sorry to hear this is ruining your life. I have been there!!! In fact I feel like I just read about myself. I am now 33 and teaching school but at 23 I was working as a toddler teacher and going to school to be a teacher. Don’t let UC take control of you. Sounds like you should get a 2nd opinion. If life is that bad the doc should have given you a steroid like prednisone or something. They are not the best but will definitely bring you some relief. I take a prescription probiotic called VSL#3 which has done wonders for me. With UC you definitely have to take care of yourself and not rely on the doctors. Keep a food journal of what you eat and what times, also keep track of when you are using the bathroom. I did that for a year and it helped me see exactly what foods to avoid. I wish you the best of luck and hope you find some relief soon!!!

    • Nikole
      nikole August 6, 2013 at 1:40 pm #

      thank u so much!! i will def start keeping track of everything…

  5. Jessica August 6, 2013 at 9:03 am #

    Hi Nikole,

    I was in your shoes for a long time and tried as many medicines (up to 19 pills daily) as I felt comfortable taking before finally making the “big” decision to meet with a surgeon. I discovered I had colotis in my early 20’s (am 31 now) and accepted the 15-30 trips a day as my normal. I took meds, tried diets and courses of steroids, nothing seemed to work. In early 2012 I had a colonoscopy that showed the colits had spread and I need to consider remicade, humira or something similar. I was hospitalized for a good portion of last summer due to a flare that would not quit. I was on steroids in every way possible, enemas, IV, shots, pills – it was completely resistant, exhausting and emotionally draining. I spoke with the GI’s at the hospital, my GI and my husband at length about our next options. I reviewed the meds, the surgeries etc and ultimately decided I wanted my health back, I wanted the control. In September of 2012 I had a total proctocolectomy with ileoanal anastomosis and loop ileostomy. I lived with the ileostomy for 4 months and had my take down in December 2012. Although it was scary, challenging and at times I wasn’t sure I’d made the right choice ultimately I am happy that I made this decision. Now I take immodium and a probiotic, I can eat salad, fruits and other things I was afraid to even think about before this journey. I in no way think surgery is the only way to go but it was the only way for me. I am 8 months post takedown, I am 7 months pregnant, and feel better than I have in years. I still face some challenges and worry what the future will hold for me but I know that it is better now than it would ever have been if I were still sick. Good luck in finding the right path for you.

  6. Adrian August 6, 2013 at 9:52 am #

    First of all embrace the fact that you have UC, acceptance! This is a huge challenge in your life, accept it as a challenge that will make you stronger than the general public.
    Keep a log of foods you eat and what your body does, something might show up, it didn’t for me.
    Remove stress, learn to relax, life is what it is, we can only control what ourselves.
    Find a support group, it helps to talk to people who have been there done that, you will find that people can gain strength by helping others, so give people the chance to help you and in time you will gain strength by helping others.
    I’m 36 year old male that is very independant and bullheaded! have had my struggles to a point of waking up in hospital with a priest over my bed, an IV in one hand and a blood pressure monitor in the other, my ass was sore from diarrea and my throat hurt from vomiting, I had no idea where I was and no idea how I got there. It turned out I had driven myself to the hospital and had been there for two days already, I was down to 128 pounds. I had to accept the UC, the diarrhea, the constant tired, the blood and for me, the vomiting.
    New drugs and removing some stress, my grand father died of strokes a month after the hospital stay, we’re enough for me to start liveing life and empty that bucket list, have travelled to 11 countries 4 continants, ski dive, canyon swings.
    Would not change haveing UC, challenge brings knowledge.
    Look after your self! Adrian

    • Nikole
      nikole August 6, 2013 at 1:41 pm #

      oh my that sounds awful!!! i hope you are feeling better! you are right..i am trying to accept everything and take it with a positive attitude but it is hard!! hope u take care also !!!

  7. Steve Lawrence August 6, 2013 at 10:11 am #

    Like Angela said, surprised your not on steroids, I was a 20 trip a day man and after 2 months of increasing blood and a camera procedure I was diagnosed with UC, went from a Skydiving hobby and a an Engineering Air Force career to being afraid to leave the house.

    Currently 5 months since diagnosed and on 15mg of steroids and 9 tables of balsalazide. I now go to the gym 4 times a week and can even do the odd day skydiving again. The RAF are posting me to a non deployable unit (I’ve done 18 years and several warzones so its a nice break!).

    Always worried the drugs wont work and i’ll end up with surgery bit this site has helped me to realise my life isn’t over.

    Hope you get the right medication package soon, remember I was 20 times a day with LOTS of blood and now i’m averaging 2 or 3 trips mainly morning, have a look at Adams diet and the SCD diet too, the SCD even lets you have wine and steak (in moderation!)

  8. Don
    Don August 6, 2013 at 11:48 am #

    Hi Nikole! I have been where you are and I know it’s no fun at all. I didn’t get proper care at the beginning either and ended up in the hospital ICU for 5 days. That wasn’t fun either but at least I got some relief with the pain meds. You can start on the SCD diet on your own. That gave me much needed relief from the constant diarrhea, unproductive heaves and cramping. Like others stated you should be on Prednisone to help with the inflammation. Find another doctor right away. Don’t wait. This doesn’t go away by itself. You don’t want to get as bad as I was because it takes longer to heal and you can also have permanent damage. I feel for you. Nobody should have to suffer like that.
    Don
    PS: I live in Erie,PA

    • Nikole
      nikole August 6, 2013 at 1:43 pm #

      thank u so much!! i am def going to ask my doctor about the Prednisone…i have an appointment with him Aug 20th so that will brought up!!! I live in the philadelphia area!! hope you have found a medicine that works well for u and are feeling better as well.

  9. Joan H
    Hope August 6, 2013 at 3:50 pm #

    Hi Nichole – I want to encourage you that it IS going to get better. I know how you feel, just like everyone else on this site. I have had UC for more than 20 years, my father had UC, my brother had crohn’s and colon cancer — and I know the fear that goes along with that. I think we’ve all thought about that from time to time with this disease. I agree with everyone in that you need to get follow up right away – either with the same GI doctor, or with another one for a second opinion. But I’d do that right away. Make it a priority. You are important. This is a question I have for you — does your GI Doc know that your symptoms have gotten exponentially worse? I know in the beginning I would down play my symptoms and try to stay tough during dr visits, and not want to “give in” to the disease. But what i found out for me, was that when I told my dr how it REALLY was, and how much worse it was, and then saw her multiple times, she was able to adjust meds to get me out of the flare I was in. Now, if you HAVE told your dr, and there’s no move on the dr’s part to adjust things or work with you to have a better outcome/better quality of life, then I’d move on to another dr- but again. Don’t wait. Do it now. There’s a great list on this site under the “ABOUT” tab. Contact your Crohn’s and Colitis Foundation too, right away. I am taking Lialda 1.2 GM, two tabs in the a.m. and 2 in the p.m. I also take Canasa 1000 mg rectal suppositories once in the evening. And in that bad, bad flare I recently had (flare=2 years of what you’re describing in your story) I went on prednisone and had prednisone suppositories, as well at times I had to take cortisone enemas for a few weeks at a time. Once the symptoms were controlled, then we started a med taper – my dr and me. AT THE SAME TIME – I started keeping a food journal and recorded all food and fluids, pain level, bowel movements and meds and got an idea of what was affecting me, and started simplifying my diet to only two foods and water and/or decaf iced tea. You will get lots of tips here on all that. I take naturals and probiotics too. The one that has made THE biggest difference has been Renew Life Probiotics Adult Formula 15 billion. Research shows that a starting therapeutic level of microbes for replenishing and balancing your gut flora is 10 billion. I would highly recommend that as a start and keep on those dr’s til you get the flare under control. Remember to change only one thing at a time (i.e.-don’t start adding probiotics, and herbs and oils etc all at once because then if you react you won’t know which one you’re reacting to). As Adam has said often, it’s better to start slow and go slow with those types of changes – it’s easier than if you go too fast and throw yourself into more or a continued flare. It takes some time to get out of a flare once you’re in it, so go easy, one step at a time. But please get hold of your dr or quickly another opinion. And please keep us posted. Check in every day if you can – cause you’ve got a TON of people rooting for you, Nichole! It will get better. Hang in there. You will have your life back. – Hope

  10. Tom
    Tom August 6, 2013 at 11:33 pm #

    Nikole

    As other people have said you need to get on prednisolone to get the flare under control ASAP. I was like you but prednisolone didnt control it so ended up spending 11 days in hospital, but you might have more luck with pred than i did. Either get on prednisolone or go to the hospital! Please :)

    Tom

  11. Jen From UK
    Jen August 7, 2013 at 11:16 am #

    Hope you get sorted asap Nikole. It’s a really tough journey the UC journey. Remember one way or another you WILL be healthy again! Try not to stress about colon cancer, my mum died of it in October 2012 and it has been hanging over me too. I decided with my gi’s surgery was the right choice for me. Certainly not for everyone but definitely right for me. My story is a recent one ‘what a difference 7.25 hours makes’ hope you are healthy and in control soon xxx

    • Barb August 7, 2013 at 11:41 am #

      Hi Jen,

      My Mom also passed from Colon cancer back in 1995 but did not have colitis symptoms. Just wondering did your Mom start off with Ulcerative Colitis?

      Barb

  12. Jen From UK
    Jen August 8, 2013 at 5:14 am #

    She had arthritis and eye problems from childhood treated with steroids which masked most UC symptoms. But my GI is convinced and spoke with her oncologist and cr surgeon and they think there’s a def link but who knows?! Xxx

    • Barb August 9, 2013 at 10:05 am #

      After all the research that I have done it seems like UC is inherited. I just hope that they find a cure for this UC and soon!

  13. Danielle August 9, 2013 at 7:33 am #

    Nikole have you had any blood test done the reason why i am asking is because while i live in Australia i too have ulcerative colitis was first diagnosed in June 2005 almost ended up in icu at the time because of the UC after 7 years of not having any big flare ups my Ulcerative colitis flared up badly in late June this year and while i’ve never gotten pain from the UC which i think Doctors think i am lying when i tell them i don’t more than a month later my colitis is still active i had blood test done by my local GP at the medical centre my blood test were showing not only was i becoming more and more anemic my GP said something about my liver which he told me was the result of me losing too much blood and also as a result of having to go to the loo more than 10 times a day for 4 week the GP told me he had no choice but to send me to hospital because not only was the medication not helping i was becoming more and more unwell he also told me that i may need a blood transfusion when i went to the hospital they too did blood test which also showed my potassium was really low because of the ulcerative colitis the hospital ended up admitting me i had to have an iv drip for days which they were having to give me a few different things like fluids 5 bags of potassium 2 big bags and 3 small bags of potassium that stung like hell and while im not scared of needles it didn’t help that they had to use the big vain for the drip that i could barely bend my arm for 2 days because it hurt there was also a couple of other things they had to put through my drip but can’t remember what they were my advice if you have blood test done please make sure they do a full blood test and that they check if your anemic and your potassium i would also highly recommend if you are getting the pain that bad and are going to the toilet 20 plus times a day please don’t wait until the 20th for your appointment with your Doctor please go to the hospital asap and as much as taking prednisolone sucks because of the side effects it can cause it can help having said that i hope everyone who is experiencing ulcerative colitis and crohn’s disease flare ups or symptoms for the very first all get well soon

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