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The Gift that UC Gave to Me

Meet Sharon:

I am a 42 year old mother of 4 kids ages 15,13,9,and 7. I was diagnosed at 19 years old with left-sided UC. My disease starts around the top of the left side and descends about 6-8 inches. It has always been in the same spot and has never increased in size. I have moved around a lot in the past 23 years so I have had 6 GI doctors. I had to learn what works for me so that when I move, I can inform my new doctor of my previous treatments and current needs. I am currently on Humira but hope to eventually wean off when I achieve deep remission which my doctor defines as at least 6 months with no prednisone for a year.

Some more details:

I am a true soccer mom with 3 of the 4 kids heavy into the sport. My 9 yr old hates the sport so I get my fill of dance and gymnastics as well. Our family is very close and I do not hide my disease but I do not dwell on it either. I have UC but it is not who I am.

I am a Florida native and happy to be back in my home state. I love family time, hanging out with my super understanding husband, and sharing life with people. I am studying to become an ASL interpreter for the Deaf.

Symptoms at the moment:

Currently on the verge of a flare. No blood yet but cramping, dark thin stools, frequency, urgency, and no desire for a salad!

The Gift that UC Gave to Me

Whew…how to cram 23 years of UC into a short story…Well, I had it easy for 20 years that’s for sure. I quickly learned that at the very first symptom, I could “ramp up” on Asacol or in the earlier years Sulfasalize and knock it out in as little as 2 weeks. Sometimes, it would take a month and I would get frustrated. I only used prednisone about 4 times in 20 years. My first colonoscopy was done when I was 21 and the doctor did it in his office WITHOUT anesthesia. I was diagnosed at 19 from a sigmoidoscopy which was a breeze so I was not expecting the full on torture. Needless to say it was many years before I could be convinced to have another scope. Because we moved around a lot, I have had a lot of doctors. Some I loved, some I detested. When we moved to Florida again 5 years ago, I decided I would first interview my doctor before I had a flare and find the right one. I never took maintenance drugs and had 4 healthy pregna ncies so I was pretty confident in what I needed to take care of my body. I needed a partner in my treatment not a prescription writer.

About 3 years ago I was in a nasty flare and the Asacol and prednisone(40 mg) weren’t helping. Mid way though, my doctor switched me to Lialda. He explained that it was basically the same drug but in a time released form so I could take 4 pills in the morning instead of the 4 pills 4 times a day. I kept getting sicker and upped the prednisone. My body hurt and I was in the br 30+ times a day. I collapsed on the bathroom floor and we headed to the ER. I expected a few bags of IV fluids and steroids and I would be good. Well the pharmacy would only give the Lialda 1 pill/4xs a day. Mon and Tues were better but not healed. On Wed the doctor seeing me while my doctor was out of the country, insisted I drink a Boost until my nutrient bag came in. I hadn’t had solid food in almost 3 weeks and was in “starvation mode” which he attributed to my continued demise. The blood was gone but I felt rotten and sick. He insisted my labs showed I was almost in remission eve n though I had D 30+ times a day and my room smelled so bad they had moved my roommate out. I finally got all 4 Lialda in 1 dose and drank that wretched Boost. Before long the explosive feeling in my gut localized and I thought I was going to explode. My mouth tasted like poison and I kept trying to get enough energy to roll over and spit. My heart and lungs slowed to a low hum and I very clearly knew”this is what it feels like to die”. As I started to slip away, it was as if a warm presence took control. I very clearly felt this power tell me “you are not going to die. I’ve got you. It’s almost over”. My heart and lungs began to function again and I felt a power move from the top of me through my body and the volcano in my gut just dissipated.

So, it turns out I do not have the enzyme in my liver to process the time released modifier and I poisoned myself. I can never take ASA drugs again. I flared again a year or so later and ultimately had to go on Humira. I won’t be on it forever but need it for now. Ultimately though I gained acceptance of my disease and am forever grateful that I have it. It draws me close to my Creator and He centers me in my chaotic world when I trust in Him.

Medications:

Currently use Humira which I hope to wean
VSL#3 DS-helpful but I get lazy & don’t always want to make a smoothie to add the powder
yoga-awesome for stress and feeling more in control of my body (need to get back to this)
Bible verses like Matthew 6:27 “Who of you by WORRYING can add a single hour to your life?”
Prayer

written by Sharon from Florida




14 Responses to The Gift that UC Gave to Me

  1. Maggie June 2, 2013 at 8:03 am #

    So many of us have problems with the medications the GIs give us. I can no longer take any of them. Is there any way to get that liver enzyme you need or you just skip mesalamine altogether. That’s interesting. That may be why so many of us are so sentsitive to so many meds. Thanks for the insight to that. Best of luck to you. You are a very brave woman!

  2. shelly in maine June 2, 2013 at 2:16 pm #

    Hi Sharon,
    So glad you posted your story…so important to share this info.
    Continued good luck with the meds. Just remember if you stop humira/tnf blockers you may not be able to use them again.
    Oh, another thing, I used to live in Florida, too! :-)
    Best, Shelly

  3. Jen From UK
    Jen June 2, 2013 at 2:19 pm #

    It amazes me how different ou r experiences are with uc and life can be, lovely to read and learn from each other x

  4. bev June 2, 2013 at 4:22 pm #

    Wow!!

    I wonder if that’s what I have as well. That liver enzyme, or lack thereof… I was switched from Asacol to Mezavant (the Canadian equivalent to Lialda) so that I could take less pills per day, as well. Two days in, and I was SO freaking ill! I was dry heaving, extremely nauseated, and having tons of liquid BMs in a day…it was so awful. I never put two and two together, but I did feel sort of poisoned. It was surreal, now that I think back. That was the impetus that I needed, I guess…I stopped the Mezavant and went back on the Asacol, because I still had some left…then I started a good probiotic and the L-glutamine, and started feeling so good (the symptoms began to disappear…the urgency, frequency, cramping) and so I promptly stopped the Asacol too! I will NEVER take meds for UC again. I know that one should never say never…but I’m saying it. I am so sensitive to drugs…even the Asacol made me nauseated for 14 years! My doc said it was the UC, not the drug. Sheesh.

    My GI is unimpressed, to say the least. This is the first real remission I’ve had in the whole of my UC history. Imagine that. And, I did it myself. I don’t bother going to see the GI any more. Why would I? Every visit was the same…I MUST be on some sort of maintenance UC drug. That’s the way that things are done, after all. They seem to get so miffed when we solve our own ‘problems’, don’t they?

    Thanks for the post. It was wonderful!

    Bev
    :)

  5. Sharon June 3, 2013 at 5:05 am #

    Shelly, thanks for the tip. I took 6mp before and know I can never take it again. My Humira story is interesting too. My pharmacy was changed by the insurance company and due to computer glitches, they missed 3 delivery dates. I was 1 week late taking a dose and shortly thereafter I started to flare. It has been mild and we tried several booster shots but couldn’t get into full remission. I am now diligent with my VSL#3DS daily and (thanks to Bev) started L-glut and Astaxanthin last week. I also called my doc who agreed to let me take 20 mg of Prednisone. I am hoping the steroids finally end the lingering symptoms (today might be the day-yeah) and the natural stuff kicks in fully so that I can some off of the Humira soon. At this point, I feel like maybe it has lost punch for me anyway. I am also using Spirutein protein powder and iron supplements.

    • shelly in maine June 3, 2013 at 4:11 pm #

      hi Sharon,
      We’ll keep fingers and toes crossed.
      I was allergic to 6 MP the short time I was on it, but didn’t know, other than feeling really lousy, until I started to taper my predisne and began eruptng in a rash…oh yeah, my GI was away and a terrible substitute put me on the 6 MP to begin with and refused to see me because I was about a minute late for an early a.m. appt which I told them I would have a hard time getting ut of the house to make!
      yeah, can’t make this stuff up! :-) Shelly

  6. Kathy June 3, 2013 at 9:44 am #

    I’ve introduced myself a while back, but refresh – I have had UC for a little more than a year. Family physician started me on Sulfasalazines after being diagnosed with a colonoscopy first – then off to a GI doc. He took me off them and started me on Lialda. Wow – headaces were horrible, bloating and gas were also horrible – hated Lialda!! The GI doc and I didn’t agree – he wanted me to stay on Lialda – being a RN I knew these were not good side-effects and I couldn’t work with migraines. So went off them and went back to Family physician. He put me on a short dose of prednisone 40 mg for 2 weeks. On the last day I called him and said, “Hey this is working but I’ve only been done bleeding for a few days – so he extended it with a taper dose. A few weeks off it and bleeding started up :( FP then put me on sulfasalazines, but within a week I was in his office with a major migraine for three days, fever, bloating, gas, cramps, but not much bleeding. He put me back on prednisone and set me up with a different GI doc. LOVE PREDNISONE – only drug that truly makes me feel normal. New GI doc said there are only THREE category of drugs and I am sensitive to one (ASAs), steroids is the other – can’t take them long term, and immunosuppressants – well can’t do that I work at a hospital and would pick up every germ possible :( So he wanted me to try Apriso (yes a ASA) and after 1st dose – mild headache. 2nd dose, headache increased, next day major migraine – called and stopped. He did say to try to take half – I am too scared to :( So that is where I am at. I basically feel fine (take Garden of Life probiotics) but have bleeding from a hemorrhoid and some OMG gotta go gas and mucus. No cramps, bloating or anything like that. UC made me appreciate food in a different way – now if I can learn to accept it better. Am I scared – H*ll Ya!

  7. Sharon June 4, 2013 at 3:57 am #

    Kathy, I have been on Humira for a year and I also thought I would be sick all the time. At the time I started, I was volunteering at a homeless shelter every week and I have 4 school age children bringing home all manner of germs. As it turns out, I got the flu almost right away but so did my family and we all recovered about the same time (FYI I am allergic to Tami-flu too). Otherwise, I haven’t had so much as a cold the whole year. Obviously no one wants to go on the immunosuppressants but if you ever need it, I would choose it again.

    Sharon

    • Kathy June 7, 2013 at 10:36 am #

      Sharon:
      Thank you so much for your reply! How do you learn to accept this horrible disease? I get so depressed that I rarely go anywhere but work, home, and store. My hubby asked me recently, how am I going to trail ride if I have to go all the time? I told him that last year I managed just fine. He then reminded me that last year wasn’t this bad.

      So lately, I’ve been sleeping when I am not working, and barely doing any cleaning or cooking. I miss doing the things I used to do, and I bawl every week. We live out in the country and have horses and laying hens. I rarely go outside anymore to collect eggs. I try to accept this disease, but I don’t know how.

      I started going to church this past Sunday again, but had a little anxiety feeling – do I have to go kind of feeling. It helps not having anything to eat until afterwards – but miss all the social things – people.

      My doctor is on vacation and I have an appt. on the 24th. I hope I can make it that long. I am on the constipated side of UC – thinking that is causing hemorrhoid issue. I’m sure he will talk to me about immunosuppressant meds. Thanks for letting me know how you were on them. I pray if he does put me on them it won’t be forever.
      – Kathy

      • Sharon June 14, 2013 at 3:22 pm #

        Sorry for the delay in response, I have been out of town and super busy. I will say that it took me many years of understanding my disease and my body before I could accept it and a near death experience before I could be grateful for it. When I am sick, I accept my limitations without guilt. I have 4 busy kids and a husband who works long hours. I am a stay at home mom but usually never home between sign language class, Bible study, volunteering, and kid stuff every night. During a flare, my husband helps with the cooking (disastrous but thankfully I don’t eat it) or I buy convenience foods for the family. The laundry gets ridiculously backed up and my house is a mess. I try to remember that I will get out of this flare and I can get caught up then. I have a couple of friends and neighbors that are willing to host my younger kids for playdates and feed them dinner. I missed our annual vacation last year with a horrible flare and the flu. That was a hard one. This year, I made the 17 hour drive with no problem, had wine one night, continued on to DC and did 2 full days of sightseeing. When I am in a flare, I give myself permission to take naps, watch TV, disconnect from social activities, and just “Be”. I try to let my soul rest too. Sometimes I think I need the soul rest as much or more as I need the physical rest. It is easy for depression to become a default setting (especially if I am PMSing at the same time)and I have cried “I am sick of being sick” more than once. For me, when I finally lean into my own healing instead of fighting, I give up control to GOd and let Him take care of me. In the hospital, I was very clearly given 2 words “Abide and Nourish”. I need to abide in (or stay connected to) God every day and I need to nourish my body and my relationships. It’s pretty simple really. I tend to make things more complicated than they are but I am learning….

  8. Joan H
    Hope July 6, 2013 at 10:46 am #

    Hi Sharon,
    I was just reading your story about the flare and colitis and the reaction you had to meds, and I am so impressed by what happened to you and how you handled it and are handling it. I’m impressed too, by your “In the palm of His hand” experience. It’s just this year that I finally have come into a place of acceptance with this disease, and know that people try to help and want to help (i.e.-many of the dr’s I’ve seen over the years), but there is One who can ALWAYS help, even if I am going through the worst times. I’m learning He’s there, even in a quiet moment, or a time when you feel like you’re going to die, or fail, or not be able to work, or not get to your kid’s concert or event, or not even be able to cook or look at food. This is the first year of being able to think – every once in a while – that I can look at this as a gift/utilize it as a gift. Not that God gave it to me, because we all live in this world and in this world people are sick and get sick. But looking at it as a way to be closer to God and also be much more understanding and compassionate for other people who struggle with all kinds of chronic disease. I’ve also often been very angry at God, or decided he just must not exist or care…but I think we’re in good shape together, and He can “take it” so I don’t worry so much about the anger any more. It’s all part of chronic disease.
    I don’t know if you or someone else might be able to tell me something about probiotics and etc. But I am currently tapering my prednisone dose and suppositories, I’m still taking lialda 1.2 GM , two in the morning, two in the evening, plus nexium,CAlcium with D, Vitamin B Complex — and I was taking probiotic 5 billion (Target brand – I just ordered Renew Life after reading the reviews but I’m waiting for it to arrive. A nutritionist at work said that 10 billion is the recommended, researched amount per day and you can also increase that – so today I started the 10 billion. I don’t know how fast or how much to increase that.
    I DO know that after simplifying my diet to only rice and bits of chicken – it’s all I can tolerate so far the last three weeks, but that’s actually a step FORWARD for me – I have been feeling much less pain on the probiotics, and also have seen significant decraese in bleeding to where there is almost none the past two days. I only started them two weeks ago, so it’s all new.
    Anyway,I Timothy 6:12 comes to mind :”Fight the good fight of faith” – Take care Sharon – Thanks for sharing – and thanks for that great tip on interviewing your new GI Doc BEFORE a flare happens! Good stuff! – Hope

  9. Joan H
    Hope July 6, 2013 at 10:49 am #

    P.S.-Sorry this is long! But how did you find out you had a problem processing/missing the enzyme to process the lialda? I have had elevated liver enzymes the past two blood draws, not crazy high but elevated. So just wanted to know was there a particular test the dr did that defined that for you? Thanks – Hope

  10. Sharon July 6, 2013 at 2:30 pm #

    I love the VSL#3DS which only comes in a powder form. In a flare, I would take 4 packets a day. 2 at a time in smoothies. Once I went into remission, I dropped to 1 packet a day and eventually stopped. I started back not too long ago using the VSL#3 (not the DS version) which comes in pill form and is a much lower dose. I was taking 4 pills a day for maintenance but have dropped down. My issue now is that the insurance we have now doesn’t cover probiotics and the VSL #3DS script I have is $656.00. I am debating getting a monthly prescription which I think is about $220.00 then ordering the Renew Life. I don’t even know how much that one costs.

    As for the enzyme, my GI narrowed it down. Interestingly, I have had a great-uncle die from penicillin, another uncle die from Demoral, my mom was hospitalized from a different drug reaction, my niece from Augmentin and all 4 of my kids are highly allergic to Augmentin. I can’t remember the enzyme but at the time I looked it up, I realized that missing this enzyme could be hereditary and may actually have something to do with all of our family’s “allergies” to meds. I think it was called IgM or something close to that. With the Lialda, we knew it was not an allergy since I had been on Asacol for so many years and the base drug in both is the same. Also, I didn’t really have an allergic reaction but instead was toxic. I had clearly poisoned myself. After the entire experience, I went through “starvation mode” which is a well documented stage that prisoners of war and anorexics go through. When your body has a significantly decreased amount of calories for too long, every food intake you have is immediately processed for your vital organs. I would eat and get very weak. I literally could not lift the fork to my mouth in the hospital because your extremities are not vital so they do not get the energy from your food. It also causes a mental fog. I remember having a lot of conversations with my doctor but at that point, I was in a fog and I was so focused on the spiritual experience I had that I didn’t really care as much what had happened to me physically. Also, I was so focused on trying to get better for my family that I was looking at continuing my healing more than questioning what had happened.

    As for acceptance, I know that I am not cured. Even though I was in remission for almost a year, I was completely OK with the fact that WHEN another flare came, God would take care of me. Having been so close to death, I have absolutely no fear of death if that’s what happens. It’s actually far more peaceful than I expected. Also in those last few minutes, I had no pain at all. Of course, I am not ready to head down that path again but since that is the ultimate extreme and He was with me in that, I know that He is with me in the day to day. I love Matthew 6 passages about anxiety and worry. God clearly knows we live in a broken world but He also knows our needs. When we fully rely on Him, He will either take away the struggle, hold us during the struggle or take us to the end with Him. I am blessed to have a great doctor, supportive family, great insurance, and options for treatment. Focusing on the positives help reduce the stress.

    Feel free to email me directly at sharonmac38@gmail.com any time and thanks for the positive response.

  11. Joan H
    Hope July 6, 2013 at 7:02 pm #

    Thanks Sharon – I doubled the probitotic today to 10 billion – the Renew Life that I saw came in 50 billion, which I’m afraid would be too much to suddenly be on, so I’m creeping up gradually. But I have to tell you – I was in my garden (a very simple garden but I love it all the same) for the first time today in…I don’t even know how long! I just weeded. But it felt so good! And I have seen a big difference in pain level. It was so strange, because I’m so used to pain, that I had to stand there a minute and think about it, “become one with it” :) It was different, it was good, but it’s been so long that I almost couldn’t accomodate it in my thinking, if you know what I mean. So, I’m thankful for that. I am having some pain tonight though, like gas pain/sharp pain so I don’t know if 10 billion is too much…hmmm, we’ll see….I didn’t know insurance might cover the probiotics —
    I had an experience,as well, in the hospital, where I knew I’d reached the limit and had no control whatsoever over the outcome of what was happening. It wasn’t UC, but ovarian torsion and rupture, which is the same as an infected ruptured appendix essentially. My Dr later told me I was very “lucky”. I knew I’d been through a war when I woke up from surgery and the recovery took some time, but I felt too like I knew something about Someone greater than me that day, and I knew I was in His hands. I appreciate your insight about Him either taking the thing we’re struggling with away from us, holding us while we go through it, or take us to the end with him.
    Anyway, my next step, as I read through Breaking The Vicious Cycle is to increase some protein and decrease a little of the carbohydrate that I’ve been getting from the rice and see how that goes. Thanks Sharon!

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