Long Crazy Journey To Today

Introduction:

I am 52 years young and am from West central Texas.  I have 2 grown sons and a wonderful daughter in law,We’re expecting my 1st grandbaby, a boy on or around Nov.15th and I’m very excited about becoming a “Nana” and am counting down the weeks! lol….I love time with my family and friends and spend as much time with them as possible, it’s from them that I draw my strength and they are my support system. I am extremely blessed.

My Symptoms:

Currently my symptoms are internal pain and discomfort from inflammation and an ulcer that is currently in the left side of my large intestine, severe bloating and lots of gas with most anything I try to eat,loss of appetite,change in BM habits from day to day and bouts of nausea off and on,aching in my body from head to toe in my joints,sometimes a low grade fever that comes and goes and weight loss,lost 31 pounds in 3 wks. when my flare up began over a year ago.

My Story:

Over 2 yrs ago I started feeling bad, lots of severe bloating after eating which was miserably uncomfortable, some nausea and vomiting occurred and my BM habits changed.  Then sudden weight loss, so I made an appointment to see a Dr. and that’s when my not so wonderful journey of test after test began to find out what was making me so sick.  Whatever was going on had all but completely halted my once fairly active life and its been that way ever since…I was tested for H-pylori, Giardiasis, Diverticulitis and sonograms on my gallbladder among a plethora of other tests.  Some invasive some not….The worst was waiting for all of the results and being told they were ALL negative.

Finally it came down to finding a new Dr. and her referring me to a gastroenterologist who’s first words were “We need to get you scoped”,to which I replied after 2 yrs. I’d do whatever I had to to feel better! So on Aug. 22nd, I went through an EGD and colonoscopy, no cancer, no infection but I have UC and they sent off a biopsy of the ulcer, it came back “cancer free”.  I was then told I was to go get some labs done for Celiac disease and IBD, that was 2 wks ago and I’m still waiting on those results, they were sent off to a lab in Cali.,because we have no lab here that does that sort of tests.  So here I am waiting and I’m guessing they need those results before they put me on any meds so that we can cover all my issues.

Monday and Tuesday I start nutrition classes to help me get my diet on track, since I have UC and type2 diabetes.  I feel like I’m headed for one heck of a life change, hopefully for the better! please tell me it gets better!

Where I’d like to be in 1 year:

In one year or less, I’m praying to be in remission and in no pain or flare up mode,on meds that work with little or no serious side effects and feeling like my old self again and being able to go and do whatever I want like I did over 2 yrs ago.I want to be able to do things with my family and friends and my grandson and enjoy every aspect of being a first time NANA ,with NO limitations! I want no more “good day/bad day days”! I want to go shopping,go for a walk,go see my parents,spend more quality time with my kids,go watch my oldest son perform in public venues or his other musician friends without feeling bad or sick! That’s where I’m hoping and praying to be one year from now!

Colitis Medications:

No medications yet,So if anyone has any recommendations or helpful suggestions I welcome them…I am a little anxious about the meds used and any side effects,since I know nothing about any of them.except prednisone,which when I took it for arthritis joint inflamation it made me feel like I wanted to rip peoples faces off!! lol That was an awful feeling! So please share,I welcome it,positive or negative. Thank you!

written by Kayetlyn

submitted in the colitis venting area




11 Responses to Long Crazy Journey To Today

  1. Adam
    Adam September 17, 2012 at 9:54 pm #

    Kayetlyn,

    Hang in there, you’re going to get past all this uncertainty and soon enough you’ll have all your results back and you’ll be making progress finally.

    I’m glad to hear you’re going to be checking in with nutrition and diet, its been a major part of my success, and if some diet changes can help out your Type 2 Diabetes as well, that would be excellent.

    take care, and good luck with being a Grandma too!!

    -Adam

  2. Kayetlynj September 18, 2012 at 1:36 am #

    Thank you so much Adam!I appreciate the encouragement and support you give!This site is so full of information thanks for putting it up,it’s awesome! I’m hanging in as best I can,yesterday was an “Off” day,but today’s a new day and hopefully it’ll be a better one,after all it’s one more day closer to being a Nana and being well! I’ve read alot of previous posts and WOW at some of the things others have been through,I will definitely keep everyone in my thoughts and prayers,every day!
    After reading about all of the meds used by various UC’ers and the crazy side affects they’ve gone through and all of the trials and errors of taking said medications,I’m really reluctant to even try any,the side affects seem way worse than the UC itself and with all the other meds I’m taking for other conditions,it’s pretty darn scary to even think about taking more! I did follow a link to the SCD diet and found it to be quite informative in more ways than one,especially in light of my having UC and type2 diabetes too. I’m definitely thinking it might be my best chance to kick my UC into remission and maybe even kick my type2 diabetes as well without UC meds,my sugar levels aren’t so out of control or extremely high as long as I watch what I eat,which isn’t much these days,so that wouldn’t be difficult. And my flare up isn’t as bad as alot of people have experienced,I believe mine are mild in comparison,So I would definitely welcome any and all feedback on the SCD diet good or bad as everyone’s circumstances and experiences are different.
    A question I do have is if anyone has been referred to an Opthamologist after being diagnosed? I’ve read that UC can cause eye issues and early on before my diagnosis I had something going on that I thought might have been pink eye but wasn’t,it then turned into something like a “cold” in my eye where it matted up during my sleep then watered through out the day,it gradually went away over time and was more annoying than anything else, recently I’ve noticed redness and irritation again in the same eye which is my left eye, my UC inflammation and discomfort is most significant on my left side because of the ulcer ,My primary care Dr. has referred me to one this Thursday to be checked,I had no idea about why she would be sending me until I read up on UC and the various problems it causes,like everyone else seems I have a few currently going on! =(
    Thanks to everyone for sharing their stories they’ve been so informative and inspiring, its great to not be going through this all alone because most people have no idea what we’re going through and don’t understand,people think if you don’t look sick then you can’t possibly be that sick,right? Couldn’t be more wrong,there are lots of unseen illnesses out there! So for now may God bless everyone here going through the good days and bad days and the trials and tribulations of UC,Until next time take care and kick butt!(no pun intended!)

  3. Richele
    Richele September 18, 2012 at 10:50 am #

    Kayetlyn,
    I feel your pain. I am currently flaring and am quite miserable. Good days, bad days, or sometimes weeks, and months. Hopefully after you get a clear idea of what is going on in your guts, you’ll be able to come up with a plan to heal. a lot of the medications I have taken have made things worse, at least the side effects have, or haven’t helped at all. I am allergic to prednisone, only took 6 years to figure that one out! But I have found that diet and exercise are the best remedy to this awful, debilitating disease.
    Be well,
    Richele

    • Bev September 18, 2012 at 5:53 pm #

      Right on Richele!!

      I AGREE!!

  4. Allison-3
    allison September 18, 2012 at 10:58 am #

    Hey Kayetlyn-
    you seem to have a pretty positive outlook and that is half the battle. I think SCD is a great diet for UC… I do choose to include some grains though without any problems. I soak or sprout them first (Sally Fallon Nourishing Traditions is a great cookbook). I have the SCD yogurt once a day for the probiotics. I definitely stay gluten, sugar and caffeine free and it has made me feel tons better, doesn’t tax my body and got me into remission for over a year (I was diagnosed Feb 2010). I am getting over a month long flare but starting to feel pretty good again.
    As far as the drugs go, some people do have relief from their symptoms… you never know how each body will react. I tried sulfasalazine and I lost tons more weight and felt terrible and it did nothing for my UC. I did a round of prednisone and had yucky side effects and mood swings and it didn’t help my UC. I’ve been drug free for 18 months now and it has been good eating, relaxing, destressing, sleeping well and a lot of PATIENCE. I definitely wanted to get better before my body did!!
    Best wishes for healing! Stay hopeful you are going to be feeling better soon. Do lots of research and keep reading this website. There is so much helpful information. I have learned a lot more hear than I ever did from my GI doctors.
    Allison

  5. shelly in maine September 18, 2012 at 4:36 pm #

    Hi Kayetlyn,
    It sounds like you are headed in the right direction. Knowledge is power with uc…probiotics, diet and omega 3 ‘s are all choices to look into with no side effects. But read up on all the meds they are thinking of so you know what to expect.
    I wanted to let you know there are other complications of uc-it is a full body experience! But you should see an opthamologist-iritis can occur and should be monitired/meds. You can look it up. I had it last spring and just had to do eye drops-well two rounds as I was also in a small flare-assumably went together. Just fyi-i’m a uc’er diagnosed at 15 and been Med free for over a year…so there is hope!
    Best of luck and health to you and Congrats on being a Nana!
    Shelly

    • shelly in maine September 18, 2012 at 4:38 pm #

      Oops…i’m 44! :-) now that should make more sense!
      :-) Shelly

  6. Bev September 18, 2012 at 5:52 pm #

    I have suggestions….!!!

    I take a 50 billion strain probiotic called CRITICAL CARE ULTIMATE FLORA by RENEWLIFE. One capsule per day. I also take L-glutamine, which healed the mucosa of my colon. It is a powder, and I mix one scoop with a bit of juice, every day. Lastly, I take one 4mg capsule of astaxanthin, which is a powerful little natural anti-inflammatory. I have been medication free and in remission for sevem wonderful months. I feel like I don’t even have UC any more!!!

    I stopped the meds, because I could not tolerate them.

    Cheers:)

  7. Kayetlyn September 18, 2012 at 8:49 pm #

    Thank you all for your responses,suggestions and encouragement Richele,Bev,Allison and Shelly,its very much appreciated! I’m currently not on any meds or anything because we’re still waiting for the test results for celiac and IBD to come back,it will be 3 weeks Thursday since they did the blood work and sent it off to a lab in California so I hope to hear something really soon,guess we aren’t citified enough to be able to do it here! lol
    I’m currently in mild flare up mode and very uncomfortably bloated and gassy with internal discomfort and some pain,it doesn’t matter what I try to eat,everything I eat is an issue in one way or another,from one day to the next and its crazy because I live on chicken,unsweetened applesauce and activia light and water! I don’t have the diarrhea very often but when I do it may last a few days and so far I haven’t had any(knock on wood) bloody stools at all,I have however had mild bouts of blood from rectal irritation and a few rounds of constipation,but my BMs haven’t been normal in what seems like forever and there has also been mucous periodically.
    Because my symptoms don’t seem to be as bad as some except for the inflammation and food intolerance causing the most issues,I’d really like to see if I might be able to forgo pharmaceutical medications and try the more natural supplements and SCD diet,just praying it will be an option and that I can get my gastro Dr. to agree that its ok to give it a serious try before any other methods are explored or suggested,I honestly feel it would benefit not only my UC but my type2 diabetes.It would be awesome in one year to be in UC remission and diabetes free and who knows maybe I can eliminate some other meds for other issues!Hey,if you’re gonna dream,dream BIG,right? =)
    I’m still reading,researching and absorbing every bit of information I can,there’s definitely way more to this UC stuff than I ever imagined and I’m learning so much,it’s a bit daunting and overwhelming to say the least and there’s no quick fix that’s a fact,so it surely teaches us patience the hard way.
    I do try to keep a positive attitude and hold tightly onto my faith in God,I feel that’s important for getting me through everything,because I know for a fact I couldn’t do this without him,I believe he is ultimately in control and there’s a reason for my going through this and I know I’ll come out of it a stronger person for sure,no doubt about that! =)
    I do have another question that I’d appreciate some input on,for those of you with kids,I say kids but I actually have 2 sons that are 28 and 25 and a daughter in law,how do you explain this disease to them and help them understand it? Meaning I look fine to them,therefore they don’t see me as having a “sickness or incurable disease” and don’t seem to fully understand that I can’t do things like I used to because I don’t feel good because my insides are sick,never mind that I’d give anything to be able to! Darn invisible illnesses anyways!
    Thanks for listening again and any input you have is welcomed, I look forward to the replies!I continue to keep everyone here in my thoughts and prayers,that we’ll ALL be better and in remission SOON! God Bless Ya’ll! =)

  8. shelly in maine September 19, 2012 at 3:39 am #

    Kayetlyn,
    UC is a curse and a gift…yes, a gift. It makes you appreciate all the little things and good moments.
    Your GI doc. May not agree about the diet thing…many are still old school. Sometimes you may need both. Like I said-probiotics and diet and omega 3’s no side effects. Okay maybe some Extra gassy effects from probiotic-my regular doc actually put me on to those -you need a good quality one.
    I was also tested for celiac recently just in case…my doc or nurse told me sometimes you can come back negative, but still have an Intolerance to those foods. Just can’t win, huh?
    The other great thing you can do is keep a journal of foods, etc-input and output! Try and make only 1 change at a time so you know the causes and effects.
    Explaining to people can be almost impossible even my family didn’t get it and many have ibd of some sort mostly crohn’s!! I highly recommend Adam’s book especially for others to read….it’s a great summary of what we go through and will help open the discussion. And he has a cook book, too…SCD based. Also you should look into Breaking the Vicious Cycle the science is pretty cool and even though I don’t follow completely it will help with your diet especially the intro. And 1 more thing is to understand the difference between soluble and insoluble fiber.
    Sorry to overwhelm you with more info but I promise it will pay off :-)
    Best, Shelly

  9. Kayetlyn September 20, 2012 at 2:38 pm #

    Good news,my test for Celiac was negative,so feeling good about that! My GI Doc hasn’t posted the IBD results in my patient file yet,hopefully he will soon and I’m hoping that’ll let us know something too.
    Staying Positive and taking things one day and step at a time!
    Thank you,Shelly for the response and information!:)

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