Fed Up and Seriously Considering Surgery

Meet Michaela:

My name is Michaela and i am 28 years old and live in a small town in rural Saskatchewan. I am married and have 2 beautiful daughters (10 months and 3.5 years). I have had Ulcerative Colitis for 8 years. Likely longer but 8 years since I was formally diagnosed. Currently on maternity leave but hoping to go back to work in mid March.

Some more about me:

I work as a physical therapist at our local hospital. I love my job and spending time with family and friends. I enjoy outdoor activities such as camping and hiking. I like to always be on the go and be out and about. That is what has been most frustrating about this disease for me as being house bound make me kinda crazy.

Current Colitis Symptoms:

Currently I have been in a flareup since October 2012 and am not seeing a light at the end of the tunnel yet… Current symptoms are: urgency, 10-15 unpredictable bm a day (mornings used to be my worst time of day), abdominal pain, mucous, blood (although this is improving I think), abdominal pain and fatigue. Fatigue I think has been mostly due to side effects if prednisone and a lot if urgency in the night and not sure why???

Seriously Considering Colon Surgery

When I was first diagnosed in 2005 my symptoms were manageable and cleared up with Asacol and suppositories. I have had 3 really bad long lasting flares since my diagnosis and they seem to correspond to stressful times during my life mental and physical.

The first really bad flareup was when I was preparing to write my national exams for my license to practice physiotherapy in Canada. The only thing that got me through the exam was a narcotic anti-diarrheal. And my last 2 flareups have corresponded to pregnancy and postpartum. During my first pregnancy I was sick with colitis symptoms for most of the pregnancy and then again about 10 months after my daughter was born- flareup lasted 7 months and still I tried to continue to work full time with many sick days and many miserable days at work. I was changed from asacol to pentasa, went on prednisone, did the specific carbohydrate diet, was taking 2-4 Imodium a day while still at work and some enemas. Finally I went into remission.

During my second pregnancy I was healthy but 7 months post partum I am in another flare and am into my 5th miserable month. I have just recently switched from pentasa to mezavant, have tried enemas but they actually made me feel terribly bloated and gave me severe abdominal pains. Also finally finished prednisone even though I am not better my doctor said I am prednisone dependent and wanted me off plus I hate the side effects.  Waiting for a bone mineral density test and hoping my bones are okay.

I have also seen 2 different homeopathy and have had iridology done, energy/muscle testing, live blood analysis and thermography plus supplement recommendations but nothing seems to be helping. I am beginning to feel like a terrible mother due to lack of energy to play with my kids let alone look after them (thank god I have a very supportive family and extended family). I have made the decision to be done having children basically due to this disease as I been at my worst during pregnancy and postpartum plus I fear adding to my family and not being able to look after them because I am ill.

Colitis Medications:

Mezavant 1.2 mg twice daily, probiotics, fish oil, vitamin d, mineral and multivitamin, slippery elm, aloe Vera juice, psyllium, liquid calcium, trying 3 tablespoons of olive oil per day as it has seemed to work for some, digestive enzymes, a supplement for bone health…likely others I am forgetting feels like I take pills all day long. Just finished prednisone today. Doctor pushing imuran but long term side effects scare me. Any advice would be appreciated. Likely will live on Imodium once back to work. Doctor won’t consider surgery until I have tried imuran and remicade and failed those treatments. Currently I am waiting on a second opinion.

written by Michaela

submitted in the colitis venting area

Tags: pregnancy

11 Responses to “Fed Up and Seriously Considering Surgery”

  1. Kimberly
    KimberlyMarch 16, 2013 at 12:04 pm #

    Hi Michaela,

    I have had UC since about 2000, I had my baby in dec 2011 and in march started getting a bad flare. It cleared up around June but in August came back worse and lasted until around October. In September I was put on remicade and imuran and within days was much better, by november I was close to remission and now am in remission. I was very worried about the side effects of these drugs too but had long talks with my very wonderful GI doc about it and also am monitered closely so I am giving it a try. My doc agreed that if at the end of the year I have a good colonoscopy we can try to put me back on lower risk drugs and treatments like asacol. That way I don’t have to be on the scary drugs for too long. It sounds like you are trying many of the natural remedies which seem to help a lot of people, maybe if you keep that up you can avoid the drugs. For me, after many months of being house bound and very sick, I feel great now and can take my little girl outside everyday on many adventures. I have a lot more energy now and only 1-2 bm’s per day.

    I really really want to have a second baby but I feel like you, I am afraid it will make me really sick and also that I won’t be able to take care of my little ones when I get sick. My husband is military so we live far away from all family. When he leaves for months at a time and I get sick I am in trouble! I have no choice but to duke out my illness so I can care for my little one. So I’m scared to have a second one. I am also scared about getting pregnant on these drugs although my GI assures me it is safe. I really hope you find something soon that helps. Hopefully the second opinion doctor will help too. I couldn’t imagine taking care of two babies plus making it through the work day like you do while sick! You should not have to go through your days like that! Feel better soon.

  2. bevMarch 16, 2013 at 3:43 pm #

    I think that the urgency in the night is because we are lying down, relaxing? It is a pain how the urgency seems to be bad in the morning, and then again at night as soon as we get into bed. That’s how it was for me, too.

    You know, that mezavant made me go a lot more, made the urgency worse, and made me a lot sicker. I was on asacol for years and asked to be switched to mezavant so I could take less pills. Even tho it is the very same drug, it is metabolized differently by the body…so it could possibly be exacerbating all of your troublesome UC symptoms! No kidding!

    I went off of it, and everything turned right around. It obviously did not agree with me. My doctor was floored because it is the same drug (mesalamine) as asacol, but when I talked to the pharmacist about it, he knew alot more about how our bodies metabolize it differently!

    Now, I am not on any meds, and am managing the UC with a GOOD probiotic and L-glutamine. I know that I can never take asacol or mezavant again. They both just made my UC worse, and made me so sick, and the doctor said it was the UC itself. You should think about that. You never know. Our bodies can handle a drug for awhile, and then we can develop a sort of allergy to the very same drug. Who knew!

    Bev

  3. Biljana
    BiljanaMarch 16, 2013 at 4:22 pm #

    Hi Michaela,

    I am so sorry to hear that you suffer so much. How long were you on the scd diet? Have you tried GAPS diet? That one helped me. it is basically the same only with a preparatory period for the full diet in 5v phases.
    You have to be on these diets for a long time, at least two years.
    I have been on it for one year and a month now, and have been much better and then when I am under some stress, the symptoms come back, and then I keep sticking to the diet and they go away and then come back again when I am under stress. The writer of the book says that the symptoms for colitis go away after two years on the diet, maybe just take a look at it.

    I hope you feel better soon,

    Biljana

  4. joannaMarch 16, 2013 at 5:56 pm #

    oh girl. i know what you mean. i take so many supplements that i have to keep a journal every day and check them off as i go. i’d forget otherwise or end up taking them too many times. my doctor called me yesterday saying that i need surgery at this point. i’m having a lot of mysterios blood loss and it’s keeping my iron and hemoglobin levels so low. i follow scd and have been doing so for 8 months. not sure why i’m not in remission!! i seem to be one of those cases where i try everything and nothing works.

    i don’t want surgery though. in fact, i DREAD it if the day comes. just seems unfair to try so hard to fight the disease but it keeps winning.

    i would try imuran and remicade if i were you. they can really help a lot and the side effects aren’t bad at all (i had minimum from both medications).

  5. EllenMarch 16, 2013 at 8:19 pm #

    I have a UC myself but I have another friend with UC, she was pregnant at the time, got diagnosed with UC while she was pregnant. I think a hormonal balance has quite a lot to do with UC. Stress can affect hormone as well I am sure.
    If your quality of life is affected to the point you cannot take care of your children, I think Imuran or Remicade can help a lot. I am on Prograf which works within a couple of days, did a magic for me. My blood disapeared and no more urgency. It took me a while (3 months or more) till I recover because mine was very bad at the time, but with low residue food until I healed helped a lot.
    For me, SCD does not work. I eat rice, fish and lean meat plus veggies and I am ok. I eat yogurt and take probiotics in powder form. Asacol and pentasa did not work for me, but salazopyrin worked better.
    If you are worried about side effects for Imuran/Remicade, ask your doctor to monitor you closely for kidney and other numbers from your blood test. Imuran takes 6-9 months for that to be effective, and Remicade should work faster. 6MP or cyclosporine works faster.
    I know lots of people are helped from olive oil, but if you are in flare (meaning if you have inflamed intestine), I would not touch too much oil as it irritates the mucosa and your symptom can be worsen. My doc told me even for fish oil, try to omit oil as much as possible, because oil irritates the intestinal lining during flare.
    Olive oil is a strong luxative, and it can worsen your diarhea (people with constipation take that.)

  6. Graham from England
    graham leeMarch 17, 2013 at 6:17 am #

    Sorry Ellen,

    You seem well informed and probably more so than I..

    Real, Evoo can and has reversed a flare better/faster than anything I have tried (except smoking). Do you know about the natural anti inflammatory oleocanthal, not to mention the other ways Evoo helps that we do not yet fully understand, it’s not just oil i’m afraid. Unsaturated fatty acids modulate immune responses and oleic acid has also been shown to improve skin wound healing. It’s also on the gaps diet..Sorry you touched a nerve and perhaps dismissed quite a few people here who have reversed flares and gained remission with real Evoo.

    I did like your stress points on “losing it though”. I’m into that right now and believe stress is the very first “station” we fail to stop at on our way to destination “flaresville”.

    • rjwMarch 17, 2013 at 2:28 pm #

      Graham,
      Just running the Olive Extract Gel pill procedure by you. Gel form only not the capsule of-course. Do you use it daily, weekly even when you do not have flares? Any particular strength that you found worked best? Do you lie down for 30 or 40 minutes after? Any other bits of info on the subject?

    • EllenMarch 17, 2013 at 10:41 pm #

      Graham:
      Everyone reacts differently.
      I know a person who was married to an Italian lady, and was diagnosed with UC, and he took medications but nothing worked. He lost 40 lbs weight and at one point he could not work at all taking sick leave. His alternative medicine dr. did all kinds of test, and through ELISA allergy test, they found out he was allergic to olive oil. After he got married he was eating olive oil cooked food everyday. He was advised to remove the olive oil, and his UC disappeared.

      So my point is, for some olive oil may work but not for everyone.
      I am sure people who smoked cigaretts in their entire life and quit and they did not get UC. I know some who got UC after quitting smoking.

      Any oil during flare is an irritant so is fiber. Any GI would tell you that. When your gut is exteremely inflamed its not the time to introduce irritating food, but you are to eat healing food, like softly and well cooked food like soup…etc. but this is different for each person. For people with UC, not one solution works for everyone, and olive oil is no different.
      You do not need to push olive oil just because it worked for you, this doesnt mean it works for me or people who are at the edge of surgery, and people need to know that, because I know how I felt when I was at the point of almost surgery.

      I would not recommend any supplements during extreme flare so are my other UCer friends, its just too dangerous.

  7. Jeremy W.March 17, 2013 at 5:37 pm #

    I’ve been fighting UC for 2 years now. I’m 30 now and I have been through Lialda, Imurian, and now Humira. The Humira helps a little but I’m still having bloody stools and urgency. Pain goes in and out as well. Have had a hand full of accidents in the pass few months too. Not much worse than not having control. I have scheduled surgery for next Thursday to remove my large intestine and install an ilestomey bag. Not stoked about the bag but I feel I’ll get more of my life back. I can do another surgery later to create a J pouch but we’ll see how the bag works out.

    I was just trying to talk with others who have done this step.

  8. Graham from England
    graham leeMarch 18, 2013 at 7:06 am #

    RJW/Ellen

    (RJW) I will leave a reply on the usual Evoo post as I don’t wish to obstruct Michaela’s discussion any further. http://www.ihaveuc.com/olive-oil-is-helping-my-ulcerative-colitis/

    Now I understand your position Ellen, your example of “someone you know” would convince anyone olive oil was bad, though just “plain” olive oil will be. Also another endorsement for having the allergy test and why prevention steps should be explored.

    I know real Evoo wont have the same benefits for everyone but when I compare it to the meds on offer and their side effects, a simple yet extremely healthy food source that significantly helps UC (in some) should be shouted from the roof tops! We have all tried far, far worse in order to improve our condition. BTW, I saw my GI on Tuesday and he forgot to mention “what every GI would tell you” when I told him I was on 3 tablespoons per day. 3 tablespoons still being less than the average Greek consumes in a day and what many from that region have done for 5000 years! Surely we are here to help ourselves and others, I have nothing to gain from this but could not selfishly keep this information to myself, “I’m fixed, bye”! Just a very quick look produced these 2 articles, not the best but I am certain the case for Evoo will forever beat most if not all cases against…

    http://www.saudijgastro.com/article.asp?issn=1319-3767;year=2007;volume=13;issue=1;spage=17;epage=20;aulast=Alzoghaibi
    http://www.dailymail.co.uk/health/article-1267327/How-olive-oil-helps-switch-genes-lead-conditions-including-heart-disease-arthritis.html

  9. Kara
    KaraApril 4, 2013 at 5:59 pm #

    Goodness sakes. This sounds like me. Although I a a bit older than you I was also diagnosed in 2005. I am a Speech Therapist so I kind of know the work that you do and how demanding it can be. I have had 3 major flares. The first of which was nearly 5 months long and I was on every melamine, enema, steroid, steroid enema, EVERYTHING for months and I just kept getting worse. I too tried the SCD and it was the only thing that got me out of my initial flare. I then had my second major flare 3 years later when I was about 7 months pregnant with my son. I did not take any drugs as I was terrified of the effects on the baby. I actually pulled out of it in about 2 months. Although, every single minute of that 2 months was painfully scary!!! I was so stressed out. The third flare I had (and am still in) started last August (2012) when we returned from adopting our 2 year old daughter from China. I was in China for 2 weeks trying hard to manage my anxiety about traveling and trying to stay on my SCD (which was nearly impossible in China). Anyway, this time I didn’t have the excuse of being pregnant or nursing so I had to start back up with the DRUG treatments. I took two different melamine drugs which totally messed me up even more than I was when I was unmedicated. I’ve been on prednisone since November (2012) and I am weaning too. Yesterday I just started my last week of just 2.5 mgs. I too am still having a lot of symptoms. I am down to one BM a day, but I have to got to the toilet almost 10-12 times a day to pass gas with mucus. It’s so distressing. I do feel like since the Prednisone suppresses your immune system, at some point in time it hinders you progress toward healing. It works great to control the inflammation, but if it decreases your ability to heal, then how will your guts ever heal up?? That doesn’t make sense to me (and I am not a doctor I guess) but I do believe when you are weaning, you just have to tough it out otherwise you will be on prednisone forever. Anyway, blah blah blah, I have been in a pretty severe flare for almost 8 months now and there are days that I just really think I want to get it taken out too. But, honestly I think it’s just the heat of the moment and a lot of it is the prednisone. That stuff can totally whack you out of your head. I am irritable, on edge and ready to fight everything tooth and nail when I am on it. I hate myself on prednisone. My doctor wants me on Imuran too but I have avoided it thus far saying I am sticking to SCD and want to wean off Prednisone and just give my body a rest for at least a month or two to just see what it can do for itself. Please keep us posted with your status. I am right here with you with toddlers in the home and my husband is gone a whole lot for work certain times. The only thing I have found to help right now is the lactobacillus daily and Vitamin D3. I also find that if I cut off my eating at about 7:00PM that the urgency and restlessness at night is decreased. I have been getting 8 hours of sleep without having to get up. That in itself is promising. I went back to bare bones SCD but it is very time consuming and when you’re already kind of crazy from the prednisone it can be even more difficult to do something else that makes you even more crazy. I am hoping that one day soon I’ll just wake up and be better. Ha.

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