Is Remission Even Possible Anymore?

12 years of colitis

My name is Savannah and I’ve had UC for 12 years now.

My name is Savannah and I’ve had UC for 12 years now. I was first diagnosed at 15 and have been in and out of remission ever since. I am 27 and have been happily married for 2 years. I work as a dental assistant for an oral surgeon. My last colonoscopy was a year ago, results showed bad inflammation.

Some more about me:

In my free time( and to take my mind off my flares) I like to bake. I would love to open my own bakery one day. I’m a shy person until you get to know me. I’m a born and raised Texan, I’ve lived in Houston my whole life. I have 2 cane corso mastiffs that are always by my side when my flares keep me down.

Symptoms:

Currently I’m experiencing a flare, my symptoms are severe cramping, diarrhea, and bleeding.

Is Remission Even Possible Anymore?

I was first diagnosed at age 15, I’m 27 now. Being a teenager with UC was difficult, at that age no one understands why you have to run to the bathroom all the time or why I couldn’t eat whatever I wanted. Once I went into remission after high school, life was a little better, I could go out with friends and not have to scope out the bathroom, I could sit through a whole movie and even eat some if the foods I couldn’t have before. Along with UC came severe anemia and joint pain. The anemia was so severe I had to get a blood transfusion, and was tested for leukemia which was scary. I’ve been lucky that my family is very understanding and helps me get through my flares, they even break traffic laws sometimes if I need to find a restroom ASAP. When I was first diagnosed, my mom became my advocate and made sure the doctors were doing everything they could to find out what was wrong and what could be done for me. I’ve been married for 2 years, and feel extremely blessed that my husband is also understanding of my frequent bathroom trips. Although he doesn’t fully understand what UC is or why I am sick a lot, he does everything he can when I’m sick.

My biggest worry now is how will my UC effect getting pregnant or will my children have colitis.

We are talking about starting a family and that is weighing heavy on my mind. I wonder if I’ll be able to conceive, I’m not sure if any of the procedures I’ve had done or medications I’ve been on for my UC will effect my fertility at all. I’m currently having a flare and I’m not responding to any medications, I don’t want to be put on more steroids or start infusions. Nor do I want to go through surgery, I feel like I’m at the end of my rope and are out of options. I don’t tolerate any sulfa drugs, the side effects are unbearable for me. I’m beginning to see a specialist and I’m hoping that they will help me see the light at the end of the tunnel and get me started on a medication that will get me into remission, so I can lead a close to normal life and possibly have children.

Ask Adam:

“What other treatments( ie. diet, supplements) for UC have worked for anyone that hasn’t responded well to the typical meds (asacol, colazol, imuran) prescribed?”

written by Savannah S

submitted in the colitis venting area









fertility

5 Responses to Is Remission Even Possible Anymore?

  1. Adam July 20, 2014 at 2:06 am #

    Hi Savannah,

    Before I forget, make sure to read the “Pregnancy and UC Survey” (107 women took part in it who’ve had children and have UC…so super relevant to some of the questions you have right now) here’s that link: http://www.ihaveuc.com/pregnancy-and-ulcerative-colitis-107-person-survey-results/

    As for treatments/supplements/diets that other people have used when medications aren’t solving and resolving symptoms…there’s an ever growing list for that (which is great news right:)

    So, let’s start off with the first two people who come to mind, Bev and Graham. They have written extensively on the site, Bev is a big believer in probiotics and Graham in Extra Virgin Olive Oil. There stories are listed here:
    http://www.ihaveuc.com/author/bev/
    http://www.ihaveuc.com/author/graham2/

    As for other ideas, I have been and still am a huge believer in the SCD diet. I use much of that thinking to keep my UC under control. I’m just coming up on a 2 year remission milestone shortly of what I’d consider living in the 90-100% range (which is friggin great). And this comes on top of several other years of long remissions in my 5 plus years experience going down this road. More about that here: http://www.ihaveuc.com/the-diet/

    Many of the diet types of ideas we discuss on the site have to do with controlling gut bacteria imbalances. You may or may not be a believer in that. I am, and thousands of others here are, but it’s not for everyone. I just happened to make more sense to me than anything else I tried. Unfortunately, this type of eating doesn’t go well with what I suspect you love to bake. (Unless you don’t use any grains in your baking…probably tuff.:)

    OK, what else for options…getting good sleep. Easier said than done of course, but removing stressful parts of your life is a huge first step. Maybe there are some aspects of living that are stoking the fire of your immune system and triggering an inflammatory response that you aren’t recognizing…Constant stressful situations that pop up daily can be a cause of that. For me, it used to be commuting to and from work…So I dropped the car and did the public transport route instead….(was a great idea, but not always possible for everyone).

    Read up on the alternative category from the site, there’s lots of other stories there that I think might give you some ideas if you are looking for other ways people are battling and dealing with their UC.

    http://www.ihaveuc.com/category/specific-carbohydrate-diet/alternative-medicine/

    Best to you Savannah, and thanks so much again for sharing.

    -Adam

  2. Rosanne
    Rosanne July 20, 2014 at 8:06 am #

    Savannah…I was diagnosed at 28. I had 2 little ones then. Remission comes and goes. I had my 3rd baby 8 yrs after I was diagnosed and was very healthy the entire pregnancy. I know everyone is different…but I think those mommy hormones surging in me helped. I am now almost 60 and I am now a Memaw. I never know what is going to trip up my UC…i do not like to credit any one thing when in remission. Eat healthy…stay away from bad carbs…be happy…have someone that loves you unconditionally and gives you lots of hugs everyday. Try to stay away from negativity, that is the hardest for me…it finds me!

    Good luck…you will be fine!

  3. Rachel July 20, 2014 at 2:53 pm #

    Hi Savannah

    You are facing a lot of the questions and anxieties I faces two years ago. I was diagnosed with uc at 18 and am now 32. Sumptoms we’ve diaherea, urgency and lots of blood. It was hell. I have had long periods of remission before but after I suffered a miscarriage in 2011 the uc symptoms came back after a 7 year remission free period! I guess it was the heartache mental andphysical stress my body went through that made me flare. I was put on steroids for about 4 months and increased asacol dose and I did get better. I was I remission when I got pregnant in July 2012 and have birth to my beautiful baby girl in April 2013. I took asacol throughout pregnancy which I was advised was safe to so and also breast feed for six months on asacol. Baby is perfect.

    One thing I would advise to you is try to be in remission before you conceive as you are more likely to stay in remission throughout pregnancy. I took this advice from my GI doctor and I can honestly say I was the healthiest I have been whilst I was pregnancy. Not a single uc symptom throughout the whole nine months.

    I did however flare up about three months after giving birth but it was minor and went away after a few weeks. I have just come out of a stubborn flare and have been put on imuran as asacol is no longer effective for me but I’m doing good.

    All I want to say is you can conceive and have a successful and happy pregnancy and a healthy child when you have UC. I am proof of that as are million of other women. So don’t worry, get better and in remission, start taking folic acid supplements now so it gets in to your bloodstream before you conceive and of you’re not already doing so, eat good, rest well and try so some gentle exercise. I love to exercise and I feel it alleviates my stress and helps me stay fit.

    Good luck and feel free to message me anytime

  4. bev July 20, 2014 at 3:43 pm #

    Hi Savannah,

    Thank you ADAM…I am the Bev (up above) of whom Adam speaks. Please read my posts, and Graham’s posts. We both refuse to take meds any more. They made me sick as well. Worse than the UC. Definitely not the answer for me! My quality of life was terrible when I was on meds. I have had UC for almost 20 years (more than 15 of those years on meds) and at this point in time…right now, is the best and closest to real ‘remission’ that I have ever been. For almost three years now…or maybe more…I have actually lost track, I have felt almost normal on NO MEDS at all.

    If you read my posts, you will see that I advocate a good probiotic (mine is ULTIMATE FLORA CRITICAL CARE by RENEWLIFE)…but you MUST take it first thing in the morning so that your stomach is completely empty and then no eating or drinking ANYTHING OTHER THAN WATER for at least a half an hour. Probiotics need to be able to do their job without the interference of food. The one I take is enteric coated so that it does not dissolve until it reaches the colon. Also very important.

    The meds are unfortunately, not the answer for UC. The doctors prescribe them because that is their job…to treat us once we are diagnosed with a condition. That is what makes so called modern ‘medicine’ go around. People get diagnosed, and then, the doctor treats with prescriptions. It’s been happening since the dawn of time. It does not make it right.

    Please read my and Graham’s posts, because I take L-glutamine as well. He takes EVOO and it works!!

    Cheers,
    Bev

  5. Lorena July 20, 2014 at 6:10 pm #

    Hi, I’ve had UC for ten years now. Two months ago I had the worst flare oft life after being on remission for four years. I was in the hospital for a week with antibiotics and steroids. I’m now almost done with the steroids, following diet, and taking Lialda and Canasa. I had two children after being diagnosed. No symptoms at all during pregnancy. I took asacol with my first child and took no meds with my second. Had no problem conceiving either.

    If you decide to have children consider storing their mother cells just in case a treatment comes up some day. I did.

    Good luck!

Leave a Reply

No matter what, colitis flares don't last forever, don't forget it:)