Where Should I Start?

Introduction:

Hi Everyone!! My name is Kimberly I’m 32, I live in Lawrence, KS GO KU!!! and in August 2011 I had my first sign of blood.

Symptoms:

Stomach aches and pains, blood and the runs!

 

My Colitis Experience:

In August of 2011 I had my first sign of blood, it went away in a week so I thought nothing of it really.

Possibly Hemorrhoids Right?

 

Then in October it came back. Had the colonoscopy and they said they had seen no sign of any particular disease just inflammation. So, at this point I am sooooo…. relieved and thanking God, the Universe whatever. Because I had pictured my life with something so terrible and didn’t think I had the emotional strength to deal with something like that. But then I recieved the lab results. Confirming moderate colitis. The doc suggested no meds at this point. Just wait to see if it comes back.

Well guess what, it started four days ago. I have not called the doctor yet. But my emotional stress is through the roof. I just had a baby boy 9 months ago”JACK”. This is suppose to be a happy time. I have been crying non-stop and I’m just so scared. I’m scared of removal. I’m trying to cope, but just writing this has me in tears.

So, from what I’ve heard on this site, you have all tried many different medications. And nothing really sounds all that great. Side effects that are the same as symptoms, it still comes back frequently, etc…

I want to try to get this under control by diet and probiotic’s first. Before I go jumping into medication.
Maybe it will only last a few weeks this time. Maybe not. There’s so many contradictions on food. I don’t no where to start. And I have to try to be happy.

CAN you be happy?

Has anyone been successful at keeping it under control without ever taking meds? What about the Probiotic Saccharomyces? I bought that and the boswella and aloe juice.

Colitis Medications:

NONE

 

written by Kimberly

submitted in the Colitis Venting Area




14 Responses to Where Should I Start?

  1. Adam
    Adam February 12, 2012 at 10:08 am #

    what’s up Kimberly,

    KU Fan…… GOOD LUCK !!!!! What’s UP BOULDER GO BUFFS!!!!

    Hey, I wanted to follow up on your question about being happy. That’s maybe the most important question out there in my opinion. Yeah, we can all get diagnosed, yeah we can all try medications, surgery, holistic healing, whatever the case may be right…
    But, can we all be happy with this UC stuff?????

    I think we definitely can. It’s not super easy, and often it takes some time to get to that comfortable place, but I truly think its possible for everyone, not just some or a few of us.

    Some tips I think are real important are:
    1) try to meet some other local people with IBD so you don’t feel so alone. maybe there is a local Crohn’s and Colitis Foundation group for the gold folks out there in Kansas. If not, maybe you could start one up, certainly there’s other people with IBD living close to you.
    2) no matter how bad UC seems to be, or becomes at times, there are always options in terms of treatment. talk with doctors, about that type of stuff. that’s what they go to school so long for.
    3) Be honest with yourself, if you are not feeling great on a particular day, that’s OK! It won’t last forever, but its usually not a good idea to push it too hard when the body is needing to rest and heal.

    lastly, about medications/medication free stuff. Speaking for myself, yes, its possible to have the good old UC and be medication free. I’m fast approaching my 1 year mark which will be in march of being 100% medication free (and no surgeries). In fact, the majority of the time since i was diagnosed in Oct. 2008 I have been med free, which is something I’m proud of, but more importantly than medication free, I’m happy.

    you can be too. take care, and go KU! (except when playing CU!!)

    Adam

    • Kimberly February 15, 2012 at 1:12 pm #

      Like all of us I wanted to say how thankful I am that I found this group of people.
      And yes, finding that happiness is key. I need to change my attitude and turn this around.
      Also, I am starting the SCD diet, just waiting for the book. It has crossed my mind about a support group in the area. I will check it out. Thanks so much!

      • Adam
        Adam February 15, 2012 at 8:37 pm #

        Hey Kimberly,

        Good luck with everything. Thank you for your comments too! This group of people here is really amazing. Take care, and I look forward to hearing how things go for you. If you ever have questions for anyone who writes on the site, just keep on writing comments.

    • Kimberly February 18, 2012 at 3:57 pm #

      have you or anyone experienced black stools when starting the scd diet. I just started and am freaking out.LoL I did read that stool color changes are normal. But I didn’t read any specifics.

  2. Traci February 12, 2012 at 10:37 am #

    Hey Kimberly! I am from Newton, KS about 20 mins North of Wichita! I got diagnosed in August 2011! But I started having a bad flare up November 2010 and my second child was just 2 months old at the time so I know how difficult it is caring for an infant and going through the symptoms of UC! Just hang in there you will definately have Great days and also Bad ones :/ ! I have flared up 3 times so far and the worst was in November 2010 I flared for 3 months before it stopped! I am taking Imuran 125mg a day and currently tapering off of predinsone at 10mg right now my 3rd flare was January 2012 doctor thinks it was a steroid withdraw flare up so tapering much slower off of predinsone this time! I am also trying the SCD (Specific Carbohydrate Diet) now started that mid januray 2012! I am going to continue it 100% for atleast a year or two and see if I can down any of my meds that I am taking!! :) Hopefully I will be 100% med free in a year or two!! I have no side effects from Imuran yet :/ but thats the risk we take to be Healthy!! I feel great no UC symptoms at all right now just have some side effects from predinsone which is very common headaches acne my hair is gross lol face getting a little fat! But I know that wont last forever :)!!! I cried and cried and cried for 3 months almost everyday after I was diagnosed! I have Pancolitis which is my entire Colon! :/ But I can tell you i am Happy I am finally Happy and I have to be for my children and myself! My husband is very supportive also which helps a lot! Its hard to let people know how you are really feeling bc we looks so healthy on the outside they just dont understand the emotional and physical pain we are in but I tell everybody!! I let my feelings out!! I dont keep them in bc it is REAL and it is Happening to ME! I got anxiety and panic attacks the first few months also bc I was so upset about having a Chronic Disease ( what me?? No way!) Never though it could happen to me! But it happend and there is nothing that will change it so I just have to move on and live my life to the fullest for me and my family!! :) Believe me it will get better but not to lie to you …. you will also most likely have bad days! We all Do :)!!!

    • Kimberly February 15, 2012 at 1:32 pm #

      Hey fellow Kansan. I can totally relate to you about the crying and telling yourself Me!! No way. This isn’t happening. I am going on the SCD diet and hoping to turn things around also.
      And it’s funny how they say or some say that there is an emotional/psycological link to this
      disease because I have never really dealt with stress very well and have had anxiety for several years now. And now it’s even worse!! Go figure. But thank you for your comment, it makes me feel
      better. I to have a very loving and supportive hubby, but sometimes it’s not enough. I mean, it’s not happening to him. It’s happening to ME!! And I just want to pull my hair out. Or scream, or cry.
      People will ask how I’m doing and I just say Good with a smile, when really I’m far from good. I hope to be in your mental place soon.:)

  3. Kim February 12, 2012 at 1:42 pm #

    Hi Kimberly,
    I live in Vancouver, Canada which I realize is incredibly far away from where you are, but I just wanted to share that I don’t actually know anyone here that has IBD, I get a ton of support from this group and others like it online. I think finding people around you is a great idea though. I was diagnosed with UC in December 2011 after having had a flare for 2 years straight. It was awful and I cried alot about it all. I am fortunate to have a husband who is a paramedic so he is very understanding of all the time I spend on the toilet…hahaha. I am taking 3.6 grams of mezavant (it’s called Asacol in the US) and I am gluten, meat and dairy free. I also take a ton of high quality probiotics daily. If you aren’t a vegetarian like me I would suggest trying the SCD, I hear it works wonders :). And yes, I am happy. I am expecting my first child in August and I have been barely keeping a flare at bay with all of the hormonal changes. I think if you need the medication to get yourself strong enough to be able to make the changes to get off the meds, then it’s all worth it. Trust me, not every day is good, but you can be happy and live with IBD.

    • Kimberly February 15, 2012 at 1:45 pm #

      Congrat on your baby!! I was wondering about pregnancy and UC.
      I am going to get on the SCD diet. Just waiting for the book!!
      Thanks for the info

  4. OrdinaryWorldWhereRU February 12, 2012 at 5:52 pm #

    I just wanted to quickly share that it was comments on this site about people’s success with Remicade that made me feel better when that was next on the list to try to put me into remission. I am not completely in remission but I am a lot better and I look forward to on-going improvement. I haven’t had any side effects yet with the drug. I am also on Asacol. What works for one person may be quite a different experience for the next. Trial and error is something I do not care for but with this disease, it seems to be par for the course. Be nice to yourself when you feel you need it, you have earned it.

  5. Wendy February 12, 2012 at 6:39 pm #

    Hi Kimberly,
    I too live in KS. Diagnosed in Jan. 2011, I was on an emotional rollercoaster afterward, it was very hard to accept at first. I decided to get better despite this disease. Sucks too much to waste my time feeling depressed. I am now following a mix of the SCD and GAPS diets as well as taking Asacol HD 800mg twice a day and Imuran 50mg at bedtime (I feel that the diets help more than the pills) as well as probiotics. I was put on prednisone at a time when I was not even having a flare and when I questioned it (by suggestion of a Dr. friend) was tapered off. I have a Dr. out of Tulsa who I feel is more of a “take these and call me when things get bad” kind of guy. Find a good Dr that you feel listens to you.
    I truly feel that diet is important as well as emotional state. Please ask any questions of me you need to, I will answer honestly.

    Best wishes

    • Kimberly February 15, 2012 at 1:54 pm #

      I to believe diet is important that’s why I’m so excited to try the SCD diet. Do you make yogurt with a machine or stove top? I am reading there are issues with the temperature being to hot in the maker.
      If your making the yogurt have you had any problems? I haven’t heard of the GAPS diet, I will have to
      read up on that.

      And also I feel like my DR. is a little flaky. So I may be switching.

      • Wendy February 19, 2012 at 5:38 am #

        I do make yogurt, at least once a week, sometimes twice. I heat my milk on stovetop, cool, mix in starter, then transfer to my eurocuisine for fermenting, it has 7 glass jars about the size of baby food jars that come with lids. The jars make it more portable when I am on the go. I have also fermented in the oven, using a glass bowl and an instant read thermometer, it works well. I only buy Dannon All Natural Plain Yogurt for my starter. It is really hard to find a plain yogurt (or any other food) here that is not sweetened or made with tons of additives.
        The reason I chose to go with parts of the GAPS diet was because I like the kefir and I like to make other fermented foods ie: kimchi, sauerkraut, pickles, etc. I am very careful to not stray too far from the SCD though, since it was my first diet and I experienced wonderful results with it. I hope you do too.
        Good luck with changing Dr.s. I have been looking myself.

  6. jamie D February 21, 2012 at 11:04 am #

    I was told in Jan I 90% likely have UC. I had bad deheria about 4 times a day with blood. I thought it was a nasty stomach bug going around but after 3 weeks I went to the GI doctor. He recommdended a colonosocpy and afterwards told me I have ulcerative colitis. He immeditaly put me on ascaol 400mg 2 pills at 3 times a day. It was crazy right after the colonoscpy I had no symptoms for a month, but today I had my first sign of blood in my stool. The asasol is making my hair fall out and giving me cramps. This is such a hard thing to deal with. I guess I will know more after my second colonoscpy in 3 months. The doctor told me I didn’t have to avoid any food execpt nuts. I realize milk really bothers my stomach and I am thinking katchup. Since on the meds I been going to the bathroom only 2 times a day usally in the morning and at night. I just don’t think I am strong enough to deal with this if I have to get surgery. I would have to give so much up in my life

    • Wendy February 21, 2012 at 5:52 pm #

      Jamie,

      The only thing I have given up is the foods that are not good for me. Sure it was hard at first! The thing that helps me is that I enjoy cooking and trying new foods. Before UC I would eat ANYTHING! Now that I am on SCD, my stomach does not ache like it used to. I thought it was normal to have gas, bloating, diarrhea and constipation all of the time! Boy, was I uneducated!
      I would recommend you starting probiotics asap. Read the list from Adam’s survey on probiotics and study them online if need be, but try at least one. Get your colon as healthy as you can so that surgery will not even be needed. Another thing, hair loss may be due to your body not absorbing the nutrients it needs due to the colitis, maybe try a multivitamin-it does help me. Others may want to weigh in on that though.

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