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Stuck Inside

Meet Tanja:

I am a 34 year old woman that has had ulcerive colitis for 9 years. I started off being diagnosed with a mild case of UC. Unfortunately after a recent colonoscopy I now have a diagnosis with a moderate left sided ulcerative colitis.

Some more about Tanja:

My family would describe me as caring, sentimental and fun loving. I love animals and horseback riding. I love experiencing different countries and cultures. I guess you can say I am also a huge fan of Disney World since my husband and I have gone 9 out of 10 years, we decided to go to Hawaii the year we got married. I also would say that having ulcerative colitis has made my shyness go away because with this disease, let’s face it, all personal private business goes out the window.

How’s Tanja Feeling:

For 7 weeks now I have had diarrhea with a lot of blood. I guess my urgency level would be considered moderate; about 5-10 times a day. I will say that my pain level is not too bad, pretty tolerable.

Tanja’s Colitis UC Story:

As I am am sitting in the hospital room, on which is day 3, of this depressing, terrifying and humbling experience, I debated on even writing a post; especially since my husband is the writer in the family. The thing is that this disease is isolating. I just happened to be web searching about UC; which is all you can do when you are stuck inside; when I came across this site. I found it to be comforting to know that people have and are experiencing the same stuff as me. I have a great family, in-laws and husband that are very supportive. But even with that, I feel like they can not truly understand what I am going thru. I should and do consider myself very lucky that this is my first major flare since I first got diagnosed 9 years ago. What is so daunting is the questions I have with no one to give me any real answers.

My doctor admitted me Thursday night because UCERIS and oral prednisone was not helping. What is even more irritating is that I have not officially spoken to my doctor since being admitted.

I do like her and she is very caring about her patients but why has she not come and seen me. Instead I get these other G.I. Doctors, from the department, that don’t know me, come to ask me the same questions over and over.

What makes this disease so frustrating is that I want answers and no one can really give me any. Why did I all of a sudden flare up? Why has the medications not helped? Why am I the only one in my family that has this? I guess these are common questions that people with UC have.

They are currently giving me a five day dose of an iv steroid. If they do not see improvement by Monday then they want to try some stronger meds like Remicade, which is very scary for me. I just don’t know what kind of improvements they are looking for. Worst off is now I am on edge trying to analyze every pain, gas bubble and stool I pass. I wonder if anyone else has experienced this similar situation and when did you see improvements?

I have an appointment with a holistic doctor next week that looks at many aspects of life from medications, diets (though they say to not eat fatty foods when you are having a flare up- I almost think it is opposite with me because I felt better eating fries and a cheeseburger then when I was eating lean meats and gluten free) and stress. I think stress is my main culprit that caused this flare. I am hoping that she can find me more natural ways in dealing with this disease. I was also wondering, from a female perspective, has UC prevented you from getting pregnant. I am hoping to start a family soon and was wondering what others had experienced.

So I just wanted to share my story because I am stuck inside on a beautiful 50 degree day which stinks especially since it was a very cold winter. Any input or advice would be greatly appreciated. Thanks for hearing my story.

Meds and Supplements:

I had an allergic reaction to Asacol when I was first diagnosed. Throughout my 9 year relationship with Ulcerative Colitis I was really lucky to be mostly meds free; with the exception of Canasa for some mini mild flares. My doctor told me about VSL 3 that I have been taking with my daily multi-vitamin.

written by Tanja G

submitted in the colitis venting area




asacol, hospital, vsl#3

11 Responses to Stuck Inside

  1. Adam
    Adam March 18, 2015 at 10:53 am #

    Hi Tanja,

    I super hope you are feeling better since you wrote your story a few days ago. Please let us know how things are going for you in the coming days when you get a chance.

    Towards the end of your story you mentioned pregancy, (I myself have zero experience:) but 107 UC’ers took part in a survey all about Pregnancy a few months ago and here’s the link to all of that, and below is a copy and paste from the very first question:

    http://www.ihaveuc.com/pregnancy-and-ulcerative-colitis-107-person-survey-results/

    Getting Pregnant was…

    50% – Not difficult, took about as long as I expected
    29% – Holy Toledo, happened much faster than I expected
    8% – Somewhat difficult, took a while longer than I had expected
    7% – None of the above
    6% – Took a much longer time than I anticipated

    You talked about analyzing every little thing, to try and figure out what’s going on. Definitely don’t think that’s strange…I think its safe to say that 99.99% of us with UC who have experienced a flare up have done the exact same thing at one time (or a thousand times) or another. It’s a tuff mental game for sure, and my recommendation would be to not beat yourself up over that.

    It might be helpful if you could ask your attending/the most helpful GI you trust there what exactly they mean about the improvements they are looking for. Just so you can have a concrete clue as to what they are really looking for in terms of your symptoms getting better.

    The first tuff and physically draining and debilitating flare up is no easy thing to get past, but most definitely you will. We all do some way or another, and no two stories are identical. But as you know, us UC folks are pretty amazing indviduals. Thousands and thousands of us have been right at the awful bloody poops/5,10,20 runs a day to the toilet, and managed to get back to a happy state. Keep your head up.

    Spring time is coming, and I think its safe to say that anybody who’s gone from healthy post diagnosis to a tuff flare up and then back to remission is expecting the same progression for you.

    Thanks for sharing Tanja, and good luck with meeting the naturopath, there’s a growing number of UC’ers who have done well taking that route too.

    Best to you,

    Adam

  2. Nikki in Chico
    nikki March 18, 2015 at 11:11 am #

    Hi Tanja,

    Thanks for posting! I have had UC for like, ever. Like 19 years? I’m 38 and have two sons, 10 and 14. UC will NOT keep you from getting preggers! Both pregnancies went well until around 7 or 8 months in. Then a flare began. Breastfeeding made it worse. Kinda weird. It was tolerable though.

    I’m so sorry you are going through a flare right now. I am always analyzing my tummy stuff, poop, gas, etc. All of us, deep down, know that there’s a trigger. Something’s not right. Is it in the food? Water? Who knows?

    I’m eager to know what they discover with all the research that is being done on microflora, etc. I have had moderate success with the SCD. I hope you feel better soon!

    Nikki

  3. Judith K
    judith kupstis March 18, 2015 at 4:38 pm #

    Hi Tanja, I was first diagnosed with UC shortly after the birth of my second child back in 1987. I know that feeling of isolation very well. This is a great site, I only wish I had found it earlier. After nearly 30 years of “dealing with the debilitating, embarrassing, and limiting aspects of this horrible disease, I ended up having major surgery to remove my entire large intestine due to the many years of damage done. Many Doctors don’t spend much time in hospitals these days. It’s health care in our country. There’s what are called Hospitalists and they should be the conduit between you and your doctor. If you have a “great” relationship with your doctor, don’t give up. I wish I had been better about taking the medicine that was prescribed for me over the years. And I recommend asking for copies of any bloodwork, test results, pathology reports etc. I will keep you in my thoughts and prayers. There are many out there and on this site that have experienced much of what you are going through. Look for positive messages, ask lots of questions, and take care of you!!! Judy K

  4. Crystal R March 18, 2015 at 8:11 pm #

    Hi Tanja, I am so very sorry you are going thru this flar.
    I too was DX in 1987. 2 weeks after my son was born.
    I am a RN in a busy hospital. What Judy talked to you about is true. Most MD admit their patients to the hospital and doctors called hospitalist treat you.
    I remember how depressed I was with a diagnos of UC. I wanted answers, what causes it, how can I prevent flare ups. I am still working on that. You are not alone. Sounds like you have a good relationship with your doctor. I am taking Lialda now which seems to keep the flares at bay.
    Hang in there you will get thru this. Take care
    Crystal

  5. PeterNZ March 18, 2015 at 8:30 pm #

    You may wish to consider Cyclosporin also. It worked for mew once when nothing else did.
    Good luck. When I’m in hospital it always helps to think that I’m ok and there are others in there who really are sick and worse off. With hindsight I can say if the meds don’t work they remove the offending organ and you back home in a week…….no more colon = no more colits

  6. Tanja G March 19, 2015 at 1:52 am #

    Thanks for the kind words! It is very comforting to hear about people going through similar situations. I am currently on day 8 in the hospital. The doctors are very much pressuring me to go on remicaide, but the problem is that I know that is not a medicine you can just easily get off of. I don’t think at the moment that I am ready to make that life long commitment. So the next thing would be to continue on steroids and go on I believe the non-bio logics, in which I believe the amino something’s. I wonder if anyone has experience with those drugs?
    A part of me wonders if I am being too stubborn to try to find a med free way, at the moment, to control my disease. I feel like does one moderate flare-up in 9 years make me commit to a lifelong decision of meds taking. Besides, I am hoping to start a family. Tik Tok
    I actually have an appointment next week with this doctor that does holistic forms of treatment so I am hoping to get some knowledge on that. An interesting thing I should mention is that I was tested positive for a bacteria infection ( not c-diff) and I had some blocked stool up on my right side of my colon. Amazingly enough after “unclogging” myself there was absolutely no signs of blood or mucus. In which honestly seeing that for the first time in 2 months you would think I won a vacation! So what I am wondering was the infection and blocked stool causing my flare to not go into remission sooner. Maybe it is wishful thinking or maybe not. I guess time will tell. I was wondering if anyone has taken a more holistic approach to this disease and what might have worked for them? Also any opinions on medications?
    Hopefully if all goes well tomorrow I may not have to be “stuck inside” for the weekend! Again, thanks Adam for the advice, encouragement and this great website! Thanks to everyone else who is giving me such wonderful words!! I greatly appreciate any opinions!

    • Dana March 19, 2015 at 12:27 pm #

      Tanja,

      Sorry you have been so sick with UC. I was diagnosed 9 years ago. Getting pregnant was not a problem at all, neither was carrying the baby to term. I am currently taking Asacol HD 3200 mg a day along with VSL 3. I didn’t notice a difference with pain or urgency with VSL 3 until about week 2 or 3 of taking 2 pills a day. I was able to cut back on Asacol to 2400 mg, due to how much better I felt on VSL 3. Give it time to start working for you. I have researched and read so many success stories about that specific probiotic. The OTC probiotics never worked for me at all. Just remember, this too shall pass. I hope you feel better soon.

  7. Tom
    Tom March 19, 2015 at 2:35 am #

    I second PeterNZ’s comment!

    If you are in the US it is known as Sandimmune over there.

    It’s not as severe as Remicade. Once you start on Remicade, there is no going back and there is nothing above it apart from surgery. If remicade did not work, sandimmune would also not work so it’s better to work your way up through the drugs.

    All the best and keep us posted

  8. Bri March 21, 2015 at 9:32 am #

    Hi tanja, I’m sorry to here your not well at the moment and in hospital i always feel so sad and isolated on those stays. I’m in a similar age group to you ( 30 ) and a similar situation, I had an uncontrollable flare and was very resistant to tradition treatment with medication I tried to control my symptoms naturally with vsl and diet and tried many supplements with my naturopath but in the end I was so sick that I was hospitalized and made the decision to try remnicade as the steroids where not working it was like a magic switch for me literally the next day after my infusion my bleeding stopped and I have had a six month remission period since. I know exactly how you feel about not wanting to go on strong medication I felt the same but I had forgotten what it was like to feel well and am enjoying it while it lasts I want the quality of life that it brings. I also want to have a family and my gastro is always telling me how important it is to be well before trying I hope you feel better soon and I honestly believe whatever decision you will make is the right one for you and everyone is different.

  9. Tanja April 9, 2015 at 8:39 am #

    So last I posted I was getting out of the hospital. I have been slowly seeing really good improvement. I saw a doctor that told me to go on this corn free, wheat free and dairy free diet. It has been hard but not impossible. I feel like the diet has helped with my UC symptoms. I even started tapering down from my prednisone,in which I am very happy about. So this is my dilemma; and any opinions/advice would be greatly appreciated. My GI doctor insists that I go on medicine because of how I did not respond to prednisone as good as they wanted me to. Though I had this bacteria infection in which they can’t say for sure wasn’t helping with my colitis symptoms decreasing. She was insistent on remicade but I don’t want to be on something long term. So then she gave me a script for imurin, which I maybe would be ok with if I wasn’t going to start to try to have kids. I talked to my OB and he said that I should not get pregnant on this medicine because it is a class D drug for pregnancy. My GI doctor said that the risks of defects are low but my OB says that it is high. The homeopathic doctor also tells me that I don’t need medicine as long as I stick to this diet. All the doctors have been very opinionated with me, almost insulted that I question what they are telling me to do. I feel so confused. Having kids is very important to me and with being 34 I don’t think I have alot of time to wait. To go on meds or not to; that is the question. Thanks for any input!

    • Bev April 9, 2015 at 12:25 pm #

      OMG OMG! This really pisses me right off. The doctors. You can’t seem to get a straight answer out of any of them. One contradicts another.

      I always go with my gut. If it doesn’t sound right, then trust your instincts. YOU are your best advocate and friend. YOU have to live with all of the consequences of any med that you put into your body.

      Be strong and be firm. The drugs used to treat UC can be damaging. Believe that. Any doctor that say that they aren’t is not worth listening to.

      A lot of doctors don’t seem to like us to have our own thoughts and opinions….but WE DO and we MUST be true to ourselves. It is VITAL that we look out for ourselves. We really are just a patient to a doctor. Not a family member.

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