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

The Scoop On My Poop

Aly with her kids on the beachIntroduction:

Hello, my name is Alysia and well my life consists of A LOT of Pink, small toys to step on in the middle of the night, and diapers! I am 25 and the mother of two beautiful girls. Sophie is three years old, and Scarlett is eight months old. When I am not changing diapers, and having tea parties I am doing part time book keeping for a local church. My family and I live near the beach which we visit a lot during the summer season. We try to get the kids out often so we usually attend places like the beach, or the park, I am a huge fan of Disneyland myself, and I love love love snowboarding!! We also like to go bike riding, and taking our newly adopted dog on walks. We are a very family oriented group so we also spend a lot of time with our extended family and my In -Laws. I try my best to stay positive and look at my glass half full because we never know when we could use a good drink!

Colitis Symptoms:

My current UC symptoms have actually started to die down a bit, thank goodness! I am still going about 2-3 daily. I have semi bloody stool and mucus when I go. I continue to have moderate to severe cramping in my abdomen which I have pretty much just gotten used to at this point. In the past couple weeks has it only been this easy going I would say.

Colitis Story:

I was finally “properly” diagnosed after my Colonoscopy in June of 2012. Before that I was experiencing symptoms of a Colitis flare up right before I found out I was pregnant with my second child. I was experiencing severe bloody, loose, and mucus stool. I can’t even really call it “stool”. Not to be graphic but it was more like soup! I thought that I may have gotten food poisoning from somewhere because the smell was so fowl, and I actually pooped myself a few times. I was so embarrassed to go ANYWHERE!! To add insult to injury I was vomiting as well due to my pregnancy. Believe it or not the ER did not catch that I was pregnant at the time of my visit, and pretty much told me that I may or may not have IBS. They prescribed me Flagyl and Cirprofloxacin. So I start taking these new meds and about a few weeks later I find out that I am pregnant. The symptoms were calming down a little bit thanks to the medication and my very bland diet. Once I found out I was pregnant I just thought it was the baby throwing my body of whack and didn’t think much more of it.

I want to say that I was about three or four months pregnant when the symptoms came back!! All I could think about was “ARE YOU SERIOUS” and was super pissed at my body. I had just started a new full time job while my boyfriend went to school. So with a three person family to support I literally could not afford to be sick at all. I ended up at the ER once again. They told me that I was extremely dehydrated and the placentia was low. However they did not tell me that I had any other issues and merely gave some medicine for my nausea I was experiencing, and sent me on my merry way. For the remainder of my pregnancy things perked up. It was smooth sailing from 6 months of pregnancy until Easter of 2012.

My In-laws and my family went to Disneyland on Easter 2012. It was a great day; we had park food which is not great but not that offensive in my opinion. That night when we got home I was experiencing some heart burn but nothing else. At around 5am is when the “Shit Storm” hit me, literally!!! I was up vomiting out of both ends quite violently I might add for a few hours. It was the beginning of my flare up I think. I have been flared up ever since that morning. I went through diagnosis of IBS, Giardia, and I think the Flu before I was diagnosed properly. I had to go to Urgent care about five times before I even got a referral to see a Gastroenterologist. Meanwhile at home I am practically bed ridden when not on the toilet. I was still eating a lot of food because I was trying to keep my nutrition up so I could nurse my youngest. So I was on the toilet, in bed, or nursing. What A Grand Life It Was!!! Everyone is telling me that I am not getting enough Fiber. Fiber , fiber, fiber. I swear if I hear that word again it will be too damn soon! I was going to the bathroom on average 9-11 times a day. I was so angry to be 25 years old pooping myself!! Again embarrassed and in terror of going ANYWHERE! UC has taken a huge toll on my life, my stress level and my overall state of being.

After my colonoscopy my Doctor said my entire colon was severely inflamed. The pictures he gave me were super gross! He gave me a Prednisone taper starting at 40mg for 7 days. Ya know standard procedure it seems. That didn’t work. He then gave me another prednisone taper at 40mg for 10 days at a time tapering down to one for 10 days. That didn’t work. I then tried Colozal and Prednisone. The Colozal I found out increases Migraine activity if you are already prone to migraines. So here I am swelling up like the girl from Willy Wonka due to the prednisone, my body aches, and I am having debilitating migraines due to the Colozal. My life is grand. I am still going to the bathroom on average 3-6 times a day. Finally the doctor gave my 6MP which I am reluctantly taking because I cannot nurse so I am told while on this medication, I am also doctoring that with Apriso, and another Prednsione taper.
So here I am today functioning to the best of my ability but still in a lot of pain, and still very nervous when I leave to go out in public. I live in complete fear of pooping myself in public. I really need some therapy over this. Believe it or not, that was my story in a Nut Shell.

Where I’d like to be in 1 year:

In a year I would like to be mainly out of pain physically, and emotionally. I would like to have regular bowels again, and not constantly be worried if I am going to poop myself in public. I plan on having an established therapist to talk to and a more concrete support system, and not in the Brown and Red zone.

Colitis Medications:

Colozal- The WORST. woke up with migraines everyday, and insomnia
Prednisone- Terrible. swelling, body aches, and insomnia
6MP- Awful. Cannot nurse while taking this medication. Super sad :(
Apriso- Meh.
Lialda- received the prescription but could not afford to fill it. $700 with coupon card. Blue Shield insurance can suck it!

written by Aly

submitted in the colitis venting area




pregnancy

7 Responses to The Scoop On My Poop

  1. Adam
    Adam October 6, 2012 at 11:04 am #

    Dear Aly,

    I had a quick question for you with regards to your early days of diagnosis, especially when things were smelling especially fowl…did your doctors ever give you a c-diff stool sample test?

    If not, you might just want to ask them about that next time you see them. I can say personally that almost 4 years ago right after I was diagnosed I tested positive for c-diff and those times spent in the bathroom were particularly smelly compared to others. Once it was taken care of, there was definite improvement. Strangely, I was given Flagyl and vancomyicin which worked to take care of it, which it sounds like you have already done.

    Take care, and keep your head up, the tuff times won’t last forever,
    -Adam

  2. Julie October 8, 2012 at 5:04 am #

    Aly,
    It’s interesting that your doctor said you couldn’t nurse with 6MP. Kind of makes me nervous and frustrated when different doctors say different things. I live in MN so I see a doctor at the Mayo clinic in Rochester. Uc and pregnancy is a focus of hers. She told me that 6mp is in your system for 4 hours. So when I nursed my baby, I would give him one bottle a day–during the time that I pumped and dumped. I p&d 4 hours after i took the pill. Then when my son started sleeping through the night, I was able to stop doing that as my doctor told me that once being in my system that long, there was no longer a possibility of it being harmful.
    Hope you’re doing well today!!!

    • Aly
      Alysia October 19, 2012 at 3:01 pm #

      My Gastroenterologist, Pharmacist, and doing my own research pretty much said that it is better to not nurse when using this medication. I wanted to be cautious with this because I was weary about taking any medication and nursing to honest. The Prednisone tapers were terrible for both myself, and my now 8 month old. We both support from Insomnia with it. I didn’t want any of the potential awful side effects of 6MP to effect her. I am glad that I was able to nurse as long as I did but the side effects she was dealing with due to me nursing her on my meds just simply wasn’t worth it. I felt so bad for her.

  3. Lisa OH
    Lisa October 8, 2012 at 8:21 am #

    Hi Aly. Your girls are beautiful and are at such a fun age! You must be one proud mommy!

    I had Cdiff w/the colitis, and it was a nightmare. The thing with Cipro is that it can make your body more suceptible to C diff ( http://www.bidmc.org/CentersandDepartments/Departments/DigestiveDiseaseCenter/InflammatoryBowelDiseaseProgram/UlcerativeColitis/Howisulcerativecolitistreated.aspx – scroll down to #5
    ). My cdiff didn’t budge until I was on both Flagyl and vacomycin, one of which was administered by an IV. After the Cdiff was gone, I felt much much better.

    I hope your flare calms down a bit. Alot of people on this site have had really good results with the SCD diet and the GAPS diet along with probiotics. Everybody is different, and the docs don’t necessarily tell you about the non-medical treatments that have helped others.

    Hang in there!!!!

    • Aly
      Alysia October 19, 2012 at 3:06 pm #

      I have read the book “Breaking The Vicious cycle” I am in full support of this diet, it looks great but I have some major weakness’s. I have recently stopped taking all my medications because the side effects were almost worse than my symptoms. Just the mood swings, depression, the swelling, insomnia, migraines, and more! It just did not seem worth it. I am trying the holistic route now and see how I fare.

      I am currently not having: caffeine – nuts- seeds – whole grains – brown rice- popcorn – anything majorly crunchy or hard – no uncooked vegetables – no alcohol – not high fiber or sugary foods or drinks – no salt – no fast food – no super heavy foods or heavily fatty foods like Mexican food ( which is my favorite food) and more.

      I am constantly changing, and improving though.

  4. Coralie October 8, 2012 at 9:04 pm #

    Dear Aly,

    I sure hope you get some regular support with your young girls. You are doing an amazing job if you are caring for them on your own and coping with UC, and pregnant to boot! Give yourself a hug and do whatever you can to de stress. I have found that eliminating everything that is unnecessary from my daily grind helps with your mindset. I got symptoms just 3 weeks after getting my first teaching job. I was suicidal at one point, living away from home, the stress of teaching, with my teenage kids fighting with each other back at home because they couldn’t manage without me being there to cook and clean. It all took it’s toll. Given up on teaching now and just live with my disabled daughter who I care for fulltime now. It’s about as stress free as I can make it right now but it helps. Take time for you. Don’t rush anywhere (this is hard for Mums of little children) but I mean it. I find that physical activity sees me bolting for the bathroom. Anyuway, our thoughts are with you. Blessings.

    • Aly
      Alysia October 19, 2012 at 3:08 pm #

      Thank you so much for those kind words. I appreciate it greatly. I hope you are doing well or at least improved yourself. I have been battling severe depression with being ill, and the drastic side effects of my medications. I just recently stopped my meds, and trying a holistic alternative.

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