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Just Diagnosed 5 days ago and have no idea what to expect!!

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Ulcerative Colitis
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Posted 3/17/2014 12:46 PM (GMT -5)
Hi Everyone,

After suffering with watery bowel movements and just plain feeling yucky for more than a year, stomach pain, nausea, bloating etc, I finally had a colonoscopy. The doc came out handed me a piece of paper and a pamphlet while I was half asleep, said you have ulcerative colitis, and that was that. I looked it over and it was a prescription for asacol and an enema and a pamphlet on ulcerative colitis. The paper work says I have mild to moderate....what does that mean?? What can I expect? Do these meds work? How long does it take?

I was also wondering if its possible that i could have been misdiagnosed, I just got over cdiff a couple of weeks before my colonoscopy. Could what the doctor seen be damage done by cdiff??

I haven't started the enemas yet, I pick them up tomorrow....any tips on how to do it successfully and what the heck is it for?? I honestly know nothing about this condition or the meds I'm taking....help!! I'm 35 years old, just had a baby in October and just want to feel good again!!
Posted 3/17/2014 1:31 PM (GMT -5)
Cheryl, welcome to the forum. I'm sorry you are feeling so yucky and that you have a UC diagnosis.

Usually after a scope you will have a follow-up appointment with your DR. When is yours? That is your opportunity to ask a boat load of questions.

So based on your timeline, you've been struggling with this all through your pregnancy. Did this start before you conceived? Several of us here have experience the joy of pregnancy triggering the start of our IBD/UC/Crohn's. So you are not alone.

The purpose of the mesalamine enema and oral med is to reduce the inflammation. This treatment approach is a good first attempt to control your illness. These meds are fine for breastfeeding (there is a small small risk that the oral med might give your nursing baby diarrhea). If you are still struggling with multiple trips to the bathroom and/or a lot of discomfort, you might consider an oral steroid to get faster reduction in disease.
Posted 3/17/2014 2:02 PM (GMT -5)
Hi Cheryl and welcome to our special group!
I was diagnosed over two years ago and sometimes I still don't know what to expect! ;)
I would start the meds, it won't hurt and hopefully helps even if you were misdiagnosed.
The enemas should have instructions on how to use. They will help with inflammation down closer to your bum, that the oral meds may not get to. If you don't have instructions, get back on here and someone will give the most detailed way too much info directions you could ever hope for!

There is a lot of info and help here. Stick around and you will learn a lot! Get used to details about pain, bowel movements, and poop.

I am getting another colonoscopy the end of April. The new GI I'm going to wonders if I was misdiagnosed. If so, the meds have still helped me so much and I never thought I would feel this good again.

Stay in touch, let us know how it is going for you.

Edit: the doc may not have given you much info because he knew you were still groggy.
Posted 3/19/2014 10:26 PM (GMT -5)
Hi Cheryl:
I was diagnosed two years ago and like the others am still learning!
Read up on it as much as you can and find a good GI doctor (or two) AND a dietician who is experienced with Inflammatory Bowel Diseases.

Take the meds, get lots of sleep, figure out what foods you can tolerate...I had to start with foods from scratch (i.e. rice, toast, applesauce, eggs, gatorade and figure out what you can eat) It took me several months to introduce other items.

Good luck!

Post Edited (traveller2011) : 3/19/2014 9:31:19 PM (GMT-6)

Posted 3/20/2014 10:48 AM (GMT -5)
Cheryl,
Welcome to the forum.
Sorry you have to be a part of this terrible club.

Yes, it's rough and certainly overwhelming when you are first diagnosed.
My suggestion is to read about this disease, scour this forum for info ( lots of great info), ask questions, etc... because frankly when you empower yourself with knowledge at least you'll know what you're dealing with.

I'd like to share what's worked for me, and hopefully you can glean some info from it.

As a newbie to the forum, I think it's important for you to know that you have options, which your doc probably won't tell you about. So let me share with you what's worked for me in the hopes it might help you too.

Some meds work for some and not for others.
IMO, it isn't one size fits all, and you have to find what works for you, and it may be a combination of things like diet, meds, supplements, etc...

For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by taking certain proactive steps, it put me in full remission.
My steps to remission included: diet modification, various supplements, probiotics, and LDN, low lose naltrexone..

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.
Posted 3/20/2014 11:06 AM (GMT -5)
The paper work says I have mild to moderate....what does that mean?? Mild to moderate inflammation is likely what your doctor saw when doing your colonoscopy, be glad it wasn't severe. What can I expect? You will be giving medications for life, known as maintenance medications, take them regardless of whether you are feeling good or bad as your chance of a uc flareup is 5 times worse if you stop your meds. Do these meds work? The medications you are prescribed reduce inflammation and are the first approach toward treating uc. Much of treating uc is trial and error, so if you don't respond well to those medications then your GI will recommend stronger medications. It varies person-to-person. How long does it take? Expect the medications to slowly heal you over 2-3 months and your symptoms to get better. Keep in touch with your GI and tell him/her about your progress. If things stop improving or get worse, then that;s a red flag to call your GI immediately and change your medications (increase dosages, try new meds, etc based up on his/her advice).

I was also wondering if its possible that i could have been misdiagnosed, I just got over cdiff a couple of weeks before my colonoscopy. Could what the doctor seen be damage done by cdiff?? Typically, you will be given a stool test to check for CDIFF and other possible pathogen causes to your symptoms (you send samples of your poop to a lab for tests). Did your GI order that?

I haven't started the enemas yet, I pick them up tomorrow....any tips on how to do it successfully and what the heck is it for?? Squeeze all of the air out of the enema before taking (air bubbles will make the enema hard to retain). Expect to not hold the enema fluid in for long the first number of times; it takes practice. Don't stray far from the toilet for a little while after taking them, for that reason. The enema fluid stains terribly, so it may be good to put an old towel down first in case you drip any of it. After taking the enema you will have a feeling like you have to purge the fluid from your system (feels uncomfortable). Ignore that feeling it should go away after a minute or two.
Posted 3/20/2014 1:15 PM (GMT -5)
c.diff does cause inflammation and bleeding, but it does not cause changes to the shape of crypt cells lining the colon. If the biopsies showed these changes in cell shape, it is IBD instead of just c.diff aftermath. In that case you likely had the IBD first, and go he c.diff because IBD made you more vulnerable.

ask for copied of pathology report on biopsy tissues.
Posted 3/20/2014 2:16 PM (GMT -5)
It's not uncommon to be diagnosed with UC after pregnancy ... my initial diagnosis was at 31, abuot 10 months after the birth of my first child. Definitely follow up with your doctor. This is a chronic illness and one that does not just go away on its own. Everyone's treatment course is different, but we all tend to deal with the same symptoms. Don't be embarrassed to talk about things here - we have all been there, all had more than a few incidents of pooping our pants in public places, dragging our kids frantically through stores to find a bathroom RIGHT NOW, and even worn adult diapers. If you're lucky, you will never have a severe flare, but know that even mild to moderate does not necessarily mean more treatable - you can have UC in a small portion of your colon (as I did) and never get into remission, or you can have a large portion effected and achieve remission on your first drug. It can be frustrating. Take some time to do your research, know all your options, learn about the different medications and choices, and most importantly, take this disease seriously. It is a serious chronic illness that needs treatment - if you ignore it, it will only get worse.
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