Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

I Don’t Understand the Pain I Get

Meet Laura:

I am 32! I’m married and have 2 kids! I live in Michigan. I have had UC since 2008. I’m sure and I know I could right more have a hard time writing about me! I will go on and on about my kiddos though;)

Some more about me:

I am from Michigan! I love being with friends and family! Love to sing! Not a good singer though! Lol my kids are my life and my husband is very supportive! I love to play tennis:)) hard to find a partner! Hubby does not like to play.

Symptoms:

Pain, some bleeding, sore muscles TIRED:/

My Colitis Story:

Hi I have had UC now for 4 1/2 years! I still feel I know nothing about it. I got Ulcerative Colitis when I was pregnant with my daughter, in that time I also got pancreatitis and liver issues! I have since had a hysterectomy because ever time I had a period I would flare as well! I would for sure say I do not have it as bad as others that’s for sure! I think mine is stress related! I’m on cymblta witch seems to have calmed my stomach! But I do have times of serve pain witch takes me into the ER. Dr and nurses at this point make me feel like I’m drug secking! They give me daltide witch is a very heavy pain med. I react to that and most of the time makes my pain worse. Does anyone know why? Also can you just have pains with no other symptoms! Again I am always, always tired some weeks are worse! I do have lots of joint and muscle pain! I’m just tired of doctors and nurse not understanding my pain! Just because they see no other signs. I feel bad for my kids because I feel like I am always saying mommy does not feel good her tummy hurts! I get nervousness for long car rides! What will I do if I’m stuck with out a bathroom?

I do take vicodine when I start getting pains witch stops my pain and diarrhea once it starts working. That’s the only thing that stops me from spasms! I am very good about when I take it. My doctor watch me on my intake of it, which I appreciated very much. That’s the last thing I need is to become dependent on it! I feel alone I guess, even though I’m not. I just just don’t understand the pain I get! But don’t necessarily have diarrhea!

Colitis Medications:

Cymbalta because I think mines stress related. Also vicodine only thing that takes spasms away! I HATE steroids every time I take them I get different side affects first was up for days and days. Seconded facial hair! Third broke out all over my body and 4th well I was just plain mean, I could not even stand myself!

written by Laura

submitted in the colitis venting area




10 Responses to I Don’t Understand the Pain I Get

  1. julie January 18, 2013 at 12:33 pm #

    Hi Laura,
    I am feeling ya hun what a miserable life we live with this demeaning illness literally, only we know how the daily grind gets us down to a point of despair. One thing you hit home on is the symptoms are not the same for everyone, for me its constant urgency horrendous gas which hurts like hell, and large amounts of blood and slime yuck yuck yuck. I have been in flare for 6 months with no let up so i have opted for bowel removal, i can’t wait and am so happy now i have decided. Your symptoms are unique to you some may experience yrs others may not. That’s the hardest part of the illness, tailoring the right meds for us, which it sound slike you have not yet determined. Keep going speak out you should not have to suffer that way. I wish you all the best and god bless you x x
    Julie from UK

    • Chris from Massachusetts January 18, 2013 at 1:28 pm #

      God be with you in your surgery Julie. 6 months in continual flares – wow you are a fighter.

      • julie January 18, 2013 at 4:06 pm #

        Thank you Chris, there is a light at the end of this very long tunnel :-)x x

    • Justin
      Justin January 21, 2013 at 12:51 am #

      Hey Julie! Good luck on your surgery. When is it? I had my first surgery about 8 months ago but it wasn’t voluntary. I got toxic megacolon and it ruptured. But now that my colons gone i have no symptoms and feel great

      • julie January 21, 2013 at 4:21 am #

        Hi Justin, I am meeting my surgeon and after care team on the 26th of Feb then it’s all systems go. How was the surgery and after, is it painful? Everyone who has had the surgery is always happier after than living the life we live with UC. I can’t wait to be normal cos i forgrot what normal is. I poop myself daily its disgusting please give me some feed back re the op and recovery x x

        • Justin
          Justin January 22, 2013 at 6:35 pm #

          Hey Julie. I cant give you too much info on what to expect with the first surgery, mine was emergency surgery and had a lot of complications. Since yours is planned it will go way smoother. Are they doing yours in 3 stages? I can tell you that it is a little rough, definately a huge shock to the body. It was painful but not to the point that it was unbearable. The pain from having a flare up was worse then the surgery pain. The part that hurt the most for me was where they brought the intestine out through my stomach to create the stoma. The adhesive on the ostomy bags are really strong and it hurt when i had to change the bag. But it heals pretty quick. But even the day after surgery i already felt better then i did pre op. Feel free to email me if you want justincolton@ymail.com

  2. Chris from Massachusetts January 18, 2013 at 1:14 pm #

    Hi Laura – It is so confusing – And I can definitely relate to the being tired part. That is the one thing that stands out from the flares I have had is just the fatigue – this disease just wipes you out.

    I wish you the best – I am sorry that you have to take all those meds – def not fun. I hope you find something that works for you. You are in my heart =)

  3. Trish January 19, 2013 at 1:20 am #

    Hi Laura. Sorry to hear you’re in so much pain. I wonder if it could be your pancreatitis rather than the UC. I have a friend with this, and her main symptom is excruciating pain if she eats the wrong things (can’t take alcohol in particular but also very sensitive to fluoride – can’t even use fluoride toothpaste). Also, can you afford a colonoscopy? If you had lesions and you got gas and a distended gut, that can be agony. Also, they need to rule out endometriosis. Good luck with finding a solution.
    Trish

  4. Justin
    Justin January 21, 2013 at 12:54 am #

    Hi Laura, sorry your goin through such a rough time. I had real bad pain with no other symptoms when i first got the disease and it was brutal. I found that diet had a lot to do with it. You might want to try eating yogurt and stuff that will go through your sys smoothly. When i would eat hard stuff like nuts or granola it would cause a lot of pain. Best lf luck hope you feel better soon

  5. Angela February 9, 2013 at 11:25 am #

    Hi Laura,

    There is also something called Irritable Bowel Syndrome which occasionally tags along with UC. Which could potentially be an explanation for why you feel horrible without showing definitive signs of a UC flare. It’s more or less stress related so learning to control it (without drugs) along with a good diet is key.

    http://www.mayoclinic.com/health/irritable-bowel-syndrome/DS00106

    However, the ER’s are the WORST for determining if you are having a UC flare. The aren’t set up for that. Go see your gastro when you aren’t feeling well and ask for a lactoferrin stool test. Really simple test and non invasive (you just give them a sample) and they can determine if you have an active UC flare. If there is not active UC flare and you feel bad then it might be IBS.

    Also, you are completely right about the hormone connection and UC flares. There are a ton of new studies on it. I’m on birth control that limits me to only 3 cycles a year to help combat that problem and it did wonders (in combo with remicade)! Every woman with this should talk to their OB/GYN about this.

    You aren’t alone! The best way to minimize stress is to be informed. Here are what I feel is the best site for accurate facts on UC. It’s by UpToDate (learned about it from my doctors as the site is for doctors but they have specific pages that use less technical words for patients so we can understand it) which means its constantly being updated based on new research findings (hence the name).

    http://www.uptodate.com/contents/ulcerative-colitis-beyond-the-basics?source=search_result&search=ulcerative+colitis&selectedTitle=1~17

    Good Luck!

    Angela

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