I Hate My Guts, Trying Not to Hate My Life

Sarah Boston ulcerative colitis

recent picture of me!

Meet Sarah:

My name is Sarah and I am a 33-year-old Boston native who hates her guts. I was diagnosed with UC in October 2013, but my symptoms began right around the end of July/beginning of August. Blood was the first sign something was wrong, even before frequency, pain and fatigue. I went downhill pretty quickly. At my first colonoscopy they diagnosed Ulcerative Proctitis. Things might have been “manageable” except for the fact that my chemistry is quirky. I suffered a bad reaction to Mesalamine, worsening my symptoms, and was hospitalized. The doctors threw the book at UC and it laughed in their face. I’ve had two flex sigmoids with biopsies, confirming that the UP progressed to full-blown UC. I began Imuran and Remicade and am just now seeing signs of improvement. The silver lining in all of this is that the first colonoscopy revealed a polyp which turned out to be a pre-cancerous type (advanced colon cancer in 10 years if unchecked). My younger sister then had one, where they also found several of those polyps. Both of us are now annual colonoscopers for life, but we dodged a bullet. I suppose things do happen for a reason.

Some more about her:

Before UC I was a normal and active young woman! I’m a writer and aspiring author, a wine enthusiast, artist, traveler, wife and pet-parent to two French Bulldogs. I love the outdoors, namely hiking, snowshoeing and snorkeling, and I’m a pretty adventurous eater. (At least, I used to be.) While in Australia I tried Kangaroo and Crocodile, and I have to say, Croc is some of the best white meat I’ve ever eaten! (I wonder where that falls on the SC Diet?)

Symptoms she’s Dealing with:

Though my symptoms have lessened in severity, I’m still experiencing blood and mucus in my stool, frequent bowel movements, bloating and cramping, strange left-side pain (sharp or stabbing as opposed to typical cramps), severe fatigue, and occasional nausea and weakness. While on steroids and some of the other drugs I also experienced severe insomnia, mood swings, blurry vision, dizziness and a lot of agitation/restlessness, as well as odd muscle tremors.

I Hate My Guts, Trying Not to Hate My Life

My story opens with me noticing bloody stool on an otherwise ordinary, unremarkable summer day at work. It was right around the end of July, maybe August 1st, and I was too busy with my job and planning our vacation to pay it a great deal of attention. Of course it didn’t go away, and while on vacation I became concerned because I was beginning not to feel well. I was also starting to go more frequently. By mid-August I was alarmed enough to call the doctor, and healthcare being what it is, I wasn’t able to get an appointment until the 30th. I was given a Mesalamine enema and an endoscopy/colonoscopy was scheduled for October. Unfortunately my intestines weren’t going to wait that long. I deteriorated so quickly over the next week or so that they “rushed” my endoscopy/colonoscopy for September 10. There they found an esophageal yeast infection, pre-cancerous polyps and a pretty advanced case of Ulcerative Proctitis. They told me to continue the Mesalamine enemas and put me on Lialda. I was also told to go gluten-free, and to eliminate anything from my diet that caused bloating, cramping, etc. Basically, no fresh fruits and veggies, and low-to-no dairy. I felt like I couldn’t eat anything.

Food restrictions heralded the beginning of the end of my life as I knew it. My husband and I had begun to talk babies, but of course that was swept off the table. My social world revolves around food and wine and activity. I had to cancel a fall foliage hiking trip with friends, as well as a winery visit/wine tasting and an apple-picking excursion. Me on a mountain without a bathroom? HA! Even me being out in an orchard was out of the question. There was no point in joining my friends for the winery because it’s not like I could drink (and I am passionate about wine, so I was heartbroken). Even visiting farmer’s markets was out of the question. My entire Fall calendar was obliterated and my social life took a nose-dive. I was too tired to write, and some days even to read (and though I’m starting to feel better, many days this is still the case). Essentially, I’ve become an unwilling couch potato. My husband travels for work, but it’s not possible for me to join him now. I’m literally being left behind while everyone else moves on with their lives. I tried to find positive outlets, such as starting a blog about my Ulcerative Colitis experiences, but I can only liken those efforts to applying a Band-Aid to a gunshot wound. They didn’t cure the actual problem. It was (and still is) difficult to stay positive, especially when I’m physically not feeling well. I’m fortunate to have a fantastic husband and really supportive family and friends, otherwise I’m not sure how I would’ve made it this far.

Back to the saga. The Lialda lasted for all of 13 days before I was having terrible stomach pain, nausea, chills, pale or white stool, bad non-stop headaches, extreme fatigue (almost to the point of confusion/disorientation) and anything that I ate triggered a bathroom visit about twenty minutes later. I was hospitalized on a Monday and discharged on a Thursday afternoon. During that time I barely ate (my first meal, the BART diet, was on Wednesday night) and they realized Mesalamine was to blame, so gave me IV prednisone. When I was released I was given a hydrocortisone enema instead of the Mesalamine enema and was put on a low dose of oral prednisone. Everyone assured me that the proctitis would abate in a couple of weeks.

Well, it didn’t. It got worse. I was going 6-10+ times per day, filling the toilet with blood, falling asleep standing up, etc. They increased the dose of prednisone and added Sulfasalazine to the prescription mix. That was a horrible combination. I was still working full-time but sleeping about 2-3 cumulative hours per night. I was dizzy nearly all of the time, I had blurry vision, mood swings that left me in tears at the slightest provocation…I’d never felt so terrible. The proctitis/colitis was bad enough, but the side effects from the drugs pushed me over the edge. Because I’d responded so well to the IV prednisone they decided I should do five days straight of IV infusions. (This was over Columbus Day weekend). So I did. The blood stopped for a whole day and I thought, YES! It’s working. Alas, no. It came right back, stronger than ever. They took me off Sulfasalazine and put me on another type of Mesalamine drug. I was concerned, given my history wi th that drug, but they assured me the chemical composition of this would be kinder. It wasn’t. I noticed the headaches and left-side pain returning, and then out of nowhere my hands turned red and swelled and I got a rash. They took me off that immediately and scheduled my second flex sigmoid.

The second flex and the biopsies showed that the proctitis had progressed to full-blown Ulcerative Colitis and moved a good way up my colon. My doctor put me on Uceris and told me we were out of “normal” options and were now facing the big boys – immunosuppressants. She put me on Imuran and told me to review the material on Remicade and Humira and choose which one I wanted. After doing some in-depth research, talking to other Crohn’s and Colitis sufferers who’d done one or the other (or both), I chose Remicade. My doctor agreed, saying it had been around longer and more was known about it. I’ve just been weaned off the Uceris, I’m weaning off the enemas, and I completed my third dose of Remicade. My frequency is diminishing (3 times per day versus 10) and the quantity of blood is decreasing as well. With the steroids out of my system I’m sleeping nearly all the way through the night, which is helping a ton. I’m also gaining back the wei ght I lost (a mixed blessing) and reintroducing things like fresh veggies and fruits into my diet. I hope this continues and that I’m able to enter remission for the new year. Time will tell!

Medications / Treatments:

Meds that didn’t work for me: anything Mesalamine–enemas, Lialda, etc.; Sulfasalazine; Prednisone oral & IV); Uceris; Hydrocortisone enemas

Meds that seem to be working: Imuran; Remicade

written by Sarah A (from Beantown)

submitted in the colitis venting area





23 Responses to “I Hate My Guts, Trying Not to Hate My Life”

  1. fatimaDecember 28, 2013 at 6:58 am #

    Hello Sarah. I hope you spend the New Year’s holiday in remission. Take care

    • Sarah A
      SarahDecember 28, 2013 at 3:25 pm #

      Thank you Fatima, I appreciate your kind wishes. Please have a happy and health(ier) 2014 too!

  2. BeatiDecember 28, 2013 at 9:36 am #

    I understand how you are feeling,was also diagnosed this year,Feels like nobody understands.Was just put on Pentasa 500mg(1000mg in the morning and 1000mg at night).Scared to eat anything.Hope you feel better soon

  3. StephanieDecember 28, 2013 at 1:54 pm #

    Yup. I am 52 and hate my guts and my life. Having a miserable time with cold and stomach flu on top of symptoms. Someone please shoot me.

    • Sarah A
      SarahDecember 28, 2013 at 3:26 pm #

      Ugh, Stephanie that is terrible. I wish you a swift recovery and a better time in 2014!

  4. Alexis BeltranDecember 28, 2013 at 2:06 pm #

    Sarah,

    I understand your situation. This past summer I was experiencing similar symptoms as yourself. I thought the weight loss and multiple visits to bathroom was due to stress after taking care of mother who had just gone through a triple bypass so I ignored the early symptoms. By October things didn’t get any better so in November I had a colonoscopy and was diagnosed Ulcerative Proctitist. I am currently on Lialda and Canasol. I had several anxiety attacks (had no idea what they were until now) and that really is not fun. I have my first follow up with GI this January and am hoping for the best. I will keep you in my prayers for comfort and healing. Let me know how everything goes with your current regimen.

  5. Caroline
    CarolineDecember 28, 2013 at 2:44 pm #

    Sarah,

    Wow, you have had a rough go of it – so sorry to hear that it’s been so tough. I hope that you feel better soon – things will improve, I am sure of it. There are so many things to try, both medicinal and non-medicinal, and you never know when you will turn the corner. I am glad the Remicade seems to be doing well for you and hope that you keep improving and feeling better. Gaining weight and getting to incorporate new foods sounds like things are moving in the right direction! :)

    Good luck and please know that you are not alone in this! Keep us posted.
    Caroline

  6. Sarah A
    SarahDecember 28, 2013 at 3:27 pm #

    Hi Caroline – thanks so much, your words mean a great deal. I feel like I’m emerging from the woods after a long 5 months or so. Every day is a little better, so I’m staying positive that the worst is behind me (at least for now)! Thanks so much again, Happy and Healthy New Year!

    • Caroline
      CarolineDecember 30, 2013 at 7:18 pm #

      Same to you! Happy (and Healthy!) New Year. I am getting a follow up colonoscopy on 1/2, so I am looking forward to kicking off 2014 with some good news. :)

      Keep it up!
      Caroline

  7. Donna G
    Donna GDecember 28, 2013 at 4:12 pm #

    Hi Sarah,

    I was just reading this article from the New Yorker and thought others might enjoy reading it. http://www.newyorker.com/reporting/2012/10/22/121022fa_fact_specter?currentPage=5
    It talks about the microbiome in the human gut and is very interesting. Might explain why your sister had similar precancerous polyps.

    Donna

    • Sarah A
      SarahJanuary 2, 2014 at 7:06 am #

      Hi Donna,

      Thanks so much for the link to the article, I’m definitely going to check it out!

  8. C
    CDecember 28, 2013 at 11:30 pm #

    Oh you poor thing! That sounds very life altering. It’s nice to come across things that do help; of course meds but also diet, this website-gives you a little control back.

  9. Jackie with UC
    JackieDecember 29, 2013 at 9:10 am #

    Sara I feel for you! Reading your story is EXACTLY mt own : ( Its so sad and frustrating to go from a lively young woman to being stuck in bathrooms all day. I’ve been dealing with UP, UC and Crohns for 2 years now and I still havent figured out what will send me into remission. I wish you a happy new year and I hope you get better!!! My heating blanket is my best friend right now : )

    • Sarah A
      SarahJanuary 2, 2014 at 7:07 am #

      Hi Jackie,

      I’m so sorry to hear that you’ve been struggling for 2 years! I hope 2014 finally brings your remission and some well-deserved relief. Amen to the heating blanket! Stay warm and feel better.

  10. Mark from Boston
    MarkDecember 30, 2013 at 11:14 am #

    Hi Sarah,

    I’m sorry to hear of your struggles, but can certainly relate. I am 31, live in Boston, and had a similar introduction to UC as well, just about a year before you did, as I was diagnosed in September 2012. I have gone through the standard series of meds, with little to no success, although I opted to avoid going the Remicade/Humira route just yet. I am still battling symptoms every day but I have seen some very clear improvements with the help of fecal transplants, which I have been able to do at home with the help of my incredibly supportive wife. I would love to chat with you if you want to bounce any questions off me or just vent about stuff…
    markdipierro@gmail.com

    Hope you continue to get relief from the meds!

    Mark

    • Sarah A
      SarahJanuary 2, 2014 at 7:09 am #

      Hi Mark,

      Ugh, sorry to hear you’re still figuring out what will help. It sounds like you may have started down the right track, I hope you continue to feel better. Thank you for sharing your email, I may just have to hit you up one of these days. I think I’m starting to exhaust my husband and my friends with my venting and updates. :)

  11. kDecember 30, 2013 at 4:30 pm #

    Sarah, UC is such a cruel disease. I hope you are soon in remission and stay in remission. Even if not it is probably too early to consider surgery, but please at least study up on it, and in a large city such as Boston you probably can find people to talk to about ileostomies and j pouches. I have had an ileostomy for almost 40 years; life had become so difficult before it. I still consider it a miracle.

    • Sarah A
      SarahJanuary 2, 2014 at 7:13 am #

      Hi k,
      Thanks, I’ve looked into surgery and gotten a 2nd opinion (about to get a 3rd opinion as well). Consensus is, it is way too early for that, and right now I don’t seem to be a candidate. If it comes to that then so be it. I’ve had a few surgeries for other things/injuries in years prior, and so I’m also saving the knife as a last resort. Me, surgeries = not a good combination. I appreciate your well-wishes, here’s to remission! :)

  12. JDecember 30, 2013 at 5:48 pm #

    Hi Sarah,

    Sorry to hear about your struggles with UC. I recently turned 30 and had surgery for UC in March 2013 and have had an ileostomy since then, but I certainly remember feeling the same types of things that you are. I hope you are able to get into remission soon.

    Best wishes!

  13. SDecember 31, 2013 at 2:52 am #

    Hi Sarah,

    I hope you get better and are in full remission soon.

  14. Mike from Ohio
    Mike HJanuary 1, 2014 at 8:36 pm #

    Remicade worked for me for about 4 doses then my body started to reject it and things went from good to bad in a real hurry. To make a long story short I had to have my colon removed and opted for the J pouch. Had I known then what I know nowIi would have never tried those poisens and had the j pouch sooner. I feel like a new person with it and on most days forget I ever had that nasy UC.

    • Sarah A
      SarahJanuary 2, 2014 at 7:15 am #

      Hi Mike,
      Glad to hear you are doing and feeling better! Like I told “k”, I’ve had surgeries in years prior (for other things unrelated to UC) so I am not eager to go under the knife any time soon, even given my lovely UC symptoms. If it comes to that so be it, however my personal goal is the super drugs to get into remission, then to get off them and continue managing it like Adam, through diet and lifestyle changes. Fingers crossed I can make it happen. Wishing you a happy and healthy 2014!

  15. GrantJanuary 15, 2014 at 7:17 am #

    Hi Sarah,

    My story sounds pretty similar. Diagnosed UP then full UC as of April 12 with symptoms from Dec 11. Meds didn’t work. Was flaring for a year with a lot of blood, pain, horrible fatigue, not made any easier by my job as a dog sled guide in the high Arctic! Got put on Imuran in the summer last year, had some ok results initially for about 4-5 months then noticed I was going downhill again until finally in November last year decided to give Scd a go. Did one week of paleo to give my body the heads up that something was going to change. Had horrible die off period but just kept on going, then…. Wow! I have never had this much energy in bloody ages. Depression is gone, blood is gone, mucus gone, urgency gone, 1 BM a day, people commenting on how fresh my skin looks and like I said, my energy levels are through the roof. I was worried that if I started Scd and it didn’t work I’d be left with only surgery as an option. But I gave it a go and all is looking good so far. I’m under no illusion that this ‘shit’ disease may come back when it wants but if it does I’ll deal with it and start Scd all over. I was skeptical about it but the results are amazing, going to enjoy this while I can. I totally recommend the Scd and if I’m capable of doing it with my hectic as hell job (14 hours a day, outside, in the mountains on a dog sled in minus stupid degrees) then i know anyone can. Next step for me is to come off the meds and see what’s what. I wish you all the luck in the world and all the best for 2014.

    Grant

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