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

Health Care Professional w/Ulcerative Colitis

jennieIntroduction:

My name is Jennie, most call me Jen. I’ll be 29 years old on April 20th. I’m a wife to a wonderful man. I’m the mother of two beautiful children. Currently my son is 4 ½ yrs. old and my daughter is 20 months old. I’ve been a medical assistant for over five years. I’ve had the great opportunity to work in a teaching hospital as a float medical assistant so I’m trained in over 40 outpatient clinics and 8 different electronic medical records. I’m trained in many clinical procedures, I’ve assisted with many surgeries, I’ve seen life leave someone and I’ve seen life begin. I’ve been a nursing student for two years now but due to my colitis I’ve had to change direction and take a break from nursing because you can’t care for patients from the toilet. I was diagnosed in December 2011. From the onset of symptoms until diagnosis it took 15 weeks to figure out what was wrong. Meanwhile I was nursing a newborn, caring for a 3yr old, trying to sell my house in Colorado and living on the toilet. Any food or drink would send me running to the bathroom.

Some more about me:

I love to read and I love to learn. Currently my hobbies include a mountain of college work and caring for my children. I’m originally from Jacksonville, North Carolina. I grew up in a military family where both parents were Marines. I’m the youngest of six children for my father and the youngest of three children for my mother. I love being near bodies of water, lakes, rivers and especially the ocean. I find it calming. I enjoy working out every day when my colitis allows.

My Colitis Symptoms:

Currently I have gas, bloating, horrible stomach cramps; upon defecation I have extreme pressure in my colon. I like to describe the cramps and the pressure like a “contraction” for my bowels. It feels like a baby is trying to come out of there but it’s usually just mucus, blood, diarrhea, and undigested foods. I have extreme fatigue. If I sit down for any period of time without doing something I start to doze off.

My Story:

I was diagnosed with ulcerative colitis in December 2011. I believe my symptoms started during my pregnancy with my daughter but there is no real way to know for sure. I was constipated near the end of my pregnancy and had blood with bowel movements. Within 4 weeks of having my daughter I started having diarrhea. After two weeks I went in to see my doctor and all tests came back normal. Ii went to visit my family in NC and ended up in the emergency room because I had gone fecal incontinent (I couldn’t hold or control my bowls). Stool samples showed an infection and I was treated with antibiotics. I started to feel relief almost immediately. After returning to CO and finishing antibiotics I ended up with c-diff so more antibiotics to get rid of that. Once finished with those my labs again came back normal. It was only a few days before I was back to living on the toilet and this time it was far worse. I found myself literally sleeping on the toilet because it would wake me up at night. Anything I put in my system sent me running to the toilet. Being a clinic health care professional I did a ton of research from my bathroom and I knew right away that I either had Crohn’s or Colitis. No one would order the colonoscopy so I called in some favors to my colleagues in GI, had the colonoscopy & finally a diagnosis. My parents are in denial, my brothers are supportive but unsure what to say or do to give me hope. My husband is my pillar of strength and a true friend to stick by me through the many humiliating accidents and many crying spells because physically and physiologically I’ve been broken.

Medications:

Lialda (currently taking) & Entocort (Budesonide) together worked for a while but upon weaning off the steroid I was sent into a flare.

Asacol was the first medication and I was on it for over a year but still visiting to toilet 8 to 15 times a day.

Prednisone (currently taking) has awful side effects. I have horrible mood swings, paranoia, insomnia, joint pain, headaches, my patience level is nonexistent.

Many antibiotics helped tons but upon stopping symptoms would return.

written by Jennie

submitted in the colitis venting area




24 Responses to Health Care Professional w/Ulcerative Colitis

  1. Jennie
    Jennie April 19, 2013 at 1:05 pm #

    I have recently started a probiotic and l-glutamine powder. It’s still too soon to tell with these two supplements are aiding in anyway. I have days where I’ll have what I consider a close to normal bowel movement but then sure enough within that same day I’ll be on the toilet with diarrhea. In my colitis support group it was mentioned that I may also have IBS because UC & IBS symptoms overlap. IBS sleeps and UC doesn’t. I go to see a new specialist soon and plan to discuss the possibility of having both.

    I also have a liver condition called Gilbert Syndrome. Not life threatening but I’m lacking the enzyme that breaks down bilirubin. Doctors know very little about this condition and most believe it’s not harmful but again every patient is different. I can’t take Tylenol and narcotics because it sends my bilirubin level high. When my bili gets high enough my neurological functioning starts to decline. I can’t poor myself a bowl of cereal or I couldn’t get my brain to tell my hand to pick up a certain instrument at work. Pretty scary stuff, until I went to a neurologist and she explained to me what was happening.

    All the GI’s I’ve been too since moving to PA want me to go on Humira but this drug can affect the liver in some awful ways. Actually many of the next level of medications to treat UC have some type of side affect for the liver. I don’t even want to consider these medications, which in turn frustrates the GI’s. One doctor almost had me convinced to do Remicade infusions but I couldn’t see jumping to that when just weeks prior I was showing signs of remission for almost one month until the decrease in steroid. I was able to workout everyday, I was on a diet that worked for me and my bowel movements were almost normal. I was still in the bathroom 3 to 5 times a day but overall I felt great compared to the last year.

    I had to add more because Adam doesn’t give you much room to share your entire story. Hoping to expand my knowledge through others experiences and gain a strong group of individuals who understand. Xoxo

    • Angela April 20, 2013 at 6:43 am #

      Hi Jennie,

      I understand your hesitations completely with your liver condition! I have Autoimmune Hepatitis (my immune system attacks my liver), so I’ve always tried to also make decisions in the best interest of both diseases. I’m on remicade for my UC (9 years) and it hasn’t strained my liver, however, fundamentally are diseases are different so I’m not sure how’d it affect your bil levels. What’d I’d recommend to you is a consult with a GI who specializes in liver diseases with your GI who specializes in IBD. Its fairly rare a doctor does both, which is fine as long as you get someone to consult with it to make sure your concerns are met with your liver condition. I was diagnosed by an amazing general GI but since then I’ve only been with IBD specialists so I always have to give them friendly reminders to check my liver panels. And no rush to start new meds if your getting better! You can always start later :)

      If you’re anywhere near western PA, UPMC is one of the top gastro departments in the country.

      • Jennie
        Jennie April 20, 2013 at 4:16 pm #

        Thank you Angela. I will have to look up that health care facility. I would say I’m scared to try the next level of medications because of the side affects. I was getting better but then my GI made a bone head move too soon by pulling the steroid. I’m meeting with a new specialist who specializes in IBD on the 29th so we shall see. It’s extremely hard for me to have unanswered questions that even the doctors can’t answer. I love to learn and that’s one reason I picked the medical field because the questions and possible answers are never ending. The human body is a pretty remarkable specimen.

  2. bev April 19, 2013 at 2:00 pm #

    HI Jen,

    I see that you are not taking a probiotic? It is absolutely IMPERITIVE that you do.

    I recommend getting and taking a good one…one specifically for those of us with UC. I take, and can’t recommend highly enough, ULTIMATE FLORA CRITICAL CARE by RENEW LIFE. It is a 50 billion strain one. For best results, take it on a completely empty stomach with water, and the try not to eat for an hour afterward. I take it when I wake up, and then I exercise, so I don’t eat for an hour. If you have to eat first thing, then take it at bedtime, providing you have eaten nothing for at least two hours.

    Also, fermented L-glutamine powder. Every day, again, on an empty stomach. I take it around 10:30 am mixed in a tiny bit of juice, for taste.

    Lastly, I take 2000units of vitamin D and a 4mg capsule of astaxanthin with lunch, because they are best taken with fats. The two are anti inflammatories and having enough vitamin D Is critical when you have UC.

    I was on asacol for 14 years straight, and it never really did any thing good for my UC, and in the end, actually began making my UC symptoms worse! Yep…worse.

    I am now on NO MEDS and have been in remission for over a year on the things I mentioned above. No kidding. It takes time. Don’t bail out too soon. You will be happy you didn’t! I believe that UC cannot be treated with meds. It can only be managed naturally. We each have to find out what the natural thing or things is,(or are) that works for us. These things worked for me, and others on this site. No doctor will tell you about these things. Also, extra virgin olive oil has worked for some people on here, as well. Look it up on this site.

    Bev
    :)

    • Jennie
      Jennie April 19, 2013 at 10:58 pm #

      Bev,

      I have recently started a probiotic and l-glutamine powder. It’s still too soon to tell with these two supplements are aiding in anyway. I can’t seem to get fermented L-glutamine powder shipped to me. I currently take VitD, Multivitamin, and Calcium (bc I’m on Prednisone). I also have the enemas but I can’t bring myself to use them after having so much coming out during the day.

      J

      • bev April 20, 2013 at 7:26 am #

        This is great Jennie…make sure you give them time. You’re right, it IS too soon to know if they are helping. Sometimes you won’t see results for awhile. Hang in there and don’t bail out too soon.

        A year into my taking them, I keep feeling better and better…I sometime even forget that I have UC! Imagine that!

        Bev
        :)

        • Jennie
          Jennie April 20, 2013 at 4:19 pm #

          I would love to forget I have UC! Everything has it’s time and place. It’s just a waiting game. I’m not sure why I can’t get the fermented l-glutamine powder shipped to me or why no one in the USA is making it. I feel this and the probiotic can only help so why not.

          Jen

    • Lisa OH
      Lisa Kapp April 21, 2013 at 6:57 am #

      hey, Bev. Have u ever been on VSL#3? I’ve had cuffitis (which is basically UC in the rectal cuff left to hook up the jpouch to the butthole) for the past couple months. I was on hydrocortisone enemas & VSL#3. My GI recently told me to stop the VSL & continue with hydro enemas.

      • bev April 21, 2013 at 7:31 am #

        No, Lisa, I never have. The only probiotic I’ve ever taken is the Ultimate Flora one.

      • shelly in maine April 21, 2013 at 4:48 pm #

        Lisa,
        If you do some research, there are some studies on vsl 3 on the pubmed specific to pouchitis and I did see something on cuffitis.
        Good luck, Shelly

        • Lisa OH
          Lisa April 22, 2013 at 5:32 am #

          All the research I’ve seen on VSL3 indicates that it is an effective tx for pouch inflammations. I’m wondering why my GI took me off of it

          • shelly in maine April 22, 2013 at 5:32 pm #

            Hi Lisa,
            Not sure…most everything I read said it is effective-only a couple that were mixed results. I definitely would just ask
            your Dr. That seems confusing to me.

  3. alex April 19, 2013 at 4:55 pm #

    Hey bev, did u say that you also take ldn ? If so why don’t you mention it ?
    Be well
    Alex

    • bev April 19, 2013 at 5:12 pm #

      Yes, Alex, I still do take 3.75 LDN, which is even lower than the usual 4.5 dose. I asked for that dose based on my weight. I am a lightweight! The 4.5 dose is based on a person 150 pounds or more. The reason that I never mention it is because I started taking it long after I got into remission from the probiotics and the L-glutamine.

      I can’t say whether it’s doing anything for the UC because I was already in remission when I started it…however….I have never slept so well in my entire life! That is why I continue to take it. It works great on me for sleep!!

      Thanks for asking,
      Bev
      :)

  4. joanna April 19, 2013 at 6:11 pm #

    it is definitely hard to work when you are running to and from the toilet. i just got out of the hospital last night and have c diff again. i’m so annoyed and feel so sucky. my mom has it now, too, since she stayed at the hospital with me.

    are you taking anything right now? supplements/meds/diet change?

    • Jennie
      Jennie April 19, 2013 at 10:47 pm #

      I have recently started a probiotic and l-glutamine powder. It’s still too soon to tell with these two supplements are aiding in anyway. I have days where I’ll have what I consider a close to normal bowel movement but then sure enough within that same day I’ll be on the toilet with diarrhea. In my colitis support group it was mentioned that I may also have IBS because UC & IBS symptoms overlap. IBS sleeps and UC doesn’t. I go to see a new specialist soon and plan to discuss the possibility of having both.

      I also have a liver condition called Gilbert Syndrome. Not life threatening but I’m lacking the enzyme that breaks down bilirubin. Doctors know very little about this condition and most believe it’s not harmful but again every patient is different. I can’t take Tylenol and narcotics because it sends my bilirubin level high. When my bili gets high enough my neurological functioning starts to decline. I can’t poor myself a bowl of cereal or I couldn’t get my brain to tell my hand to pick up a certain instrument at work. Pretty scary stuff, until I went to a neurologist and she explained to me what was happening.

      All the GI’s I’ve been too since moving to PA want me to go on Humira but this drug can affect the liver in some awful ways. Actually many of the next level of medications to treat UC have some type of side affect for the liver. I don’t even want to consider these medications, which in turn frustrates the GI’s. One doctor almost had me convinced to do Remicade infusions but I couldn’t see jumping to that when just weeks prior I was showing signs of remission for almost one month until the decrease in steroid. I was able to workout everyday, I was on a diet that worked for me and my bowel movements were almost normal. I was still in the bathroom 3 to 5 times a day but overall I felt great compared to the last year.

      I had to add more because Adam doesn’t give you much room to share your entire story. Hoping to expand my knowledge through others experiences and gain a strong group of individuals who understand. Xoxo

      • joanna April 20, 2013 at 7:49 pm #

        hey jennie.

        i’m from PA, too. what part are you in? i live in bethel park which is close to pittsburgh. i tried humira, too, but got c diff within days of being on it. the doctors at the ER told me when you are on immune system suppressors, it allows c diff to grow in your body because you can’t fight the infection. i totally regret taking it.

        i still haven’t found a decent GI in the area. it’s all the same thing every time i try a new medication. i just tried IVIG a few days ago and almost died. they had the AED machine on me with the electrodes stuck to my chest. they were pumping me full of morphine, steroids, benadryl, and nitroglycerin to get blood back to my heart. it was the worst experience of my life. i have little faith in medicine since it just keeps destroying my body.

        i’m sure it’s hard having a liver disease on top of this. it makes chosing treatments pure hell! i hope you can find something that works. it’s all been trial and error for me. the biggest things that have helped me are blackstrap molasses, serrapeptase (strong anti-inflammatory), and SCD/paleo diet.

        • Jennie
          Jennie April 21, 2013 at 7:19 am #

          Hello Joanna. I live in the little town of Troy, PA. There is nothing here. We moved here last August from Denver, CO. I had a wonderful team of doctor’s in Colorado. Plus, I knew the doctor’s personally and professionally. It’s difficult just being on the patient side and not on both. When I was a clinical worker and a patient it was easier to find providers that I liked. I’m finding it is trial and error. It’s just frustrating that there are no answers even from providers. There is very little known about this disease.

        • Angela April 21, 2013 at 9:23 am #

          Joanna,

          I’m living in Greentree right now! I’m only here for grad school, so my primary GI recommended a UPMC GI in case of emergencies and to set up my remicade while I’m here (until I realized UPMC won’t accept my health insurance). So I drive back home to Ohio every couple weeks to see my GI instead. I really like him and trust his recommendations. I’m not sure who you’ve seen already here but he recommended Dr. George Binion (who actually called me personally after receiving the referral to try and set things up) other than that I don’t know much about him though.

          • joanna April 22, 2013 at 2:51 pm #

            I’ve been seeing Dr. Binion for a while but a different one- David Binion. He’s at UPMC Presby and I think he is the head GI there. He has Crohn’s, too. I’d say he is the most thorough doctor I’ve seen. If I have an appointment with him, I could be with him for hours- sometimes he’s talked with me for over 2 hours. He tries everything though- meds, supplements, and some out of the box treatments. He’s really willing to work with you though and let you make your own decisions. He says all he can do is tell you what he knows and you can apply it if you want to.

            It sucks you have to go all the way back home just for Remicade. UPMC is very tricky with working with other hospitals/doctors. I’ve had a lot of problems trying to get infusions at other places closer to my house or seeing doctors that aren’t in the UPMC health system.

  5. Lynne April 19, 2013 at 8:57 pm #

    What’s LDN?

    • bev April 19, 2013 at 9:52 pm #

      LDN is Low Dose Naltrexone. You can google it. Naltrexone is actually a drug used to treat alcohol and drug addiction, but in a really low dose form, can apparently regulate your endorphins, thus creating all sorts of ‘good’ things to happen in your body.

      It’s quite remarkable, all the claims about it. There is a website dedicated to it.

      Cheers,
      Bev

  6. alex April 20, 2013 at 2:11 am #

    Hi Jennie
    Id like to get behind your train of thought on taking a minimal amount of pharmacuticals.
    My own experience is that healing, and trying to figure out how to heal can take a long time and that path may be as unique as the individual. I have been “recovering” for a year and a half after a hospital stay where I refused the strong recomendation of the doctors to have my dysfunctional colon removed. During this time I have weaned off of prednisone and have experienced more “temporary setbacks” than I can count. Research and other people experiences are what keep me going.I am not as well as some, but am significantly better than I was. Just hang in there through the tough times……they will change.

    Best to u
    Alex

    Ps
    Thank you bev for clearing that up for me.
    I believe your input here has been very valuable.

    • Jennie
      Jennie April 20, 2013 at 4:27 pm #

      Alex I was pretty close to just saying take my colon out because life has to be better than this. This disease is tough to handle sometimes. It’s humiliating, degrading, frustrating, and so many other words. This sometimes gets the best of us and we lose sight of our end goal. Need to stay positive and that is difficult when you’ve slept on the toilet all night. :) Thank you for commenting and sharing.

      Jen

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