New and terrified

Hi all
I'm new to this board and just wanted to introduce myself and rant a bit. I apologize in advance because this will probably be very long and all over the place.
I'm Carly, 28 years old and recently diagnosed with UC. I went into my colonoscopy expecting that diagnosis after diagnosing myself with UC or colon cancer (thanks to my medical degree on google :P) anyways. I had my scope on 2-13-17 and don't remember a whole lot from the day due to being sedated and whatnot, I was whisked out of the hospital in a daze with very little paperwork explaining anything to me and 2 prescriptions. Lialda and some type of suppository. I have yet to take either yet due to a combination of my insurance and pharmacy not communicating well and my fear of taking medications. I have a 19 month old son whom I'm still breastfeeding, he is very much a boob addict and comfort nurses very frequently throughout the day and night. My GI told me it was fine to continue breastfeeding while taking this medication and from what I've read online a majority of people/drs agree with that but I'm still very hesitant. I don't feel comfortable nursing him while taking medications, I don't want to stop breastfeeding for many reasons, but I'm scared for my health if I don't start taking my medication soon.
I've also found myself being extremely emotional, and have been crying most of the day. I've always been so healthy...4 months ago I was completely fine, and now I feel like my world has been turned upside down. Don't get me wrong, I'm extremely grateful I don't have cancer, but I can't help but feel like this is the beginning of the end. This is how I'm going to die. I can't see any light at the end of the tunnel. One day I will get colon cancer, or I'll have to get surgeries and end up with a colostomy bag (I think that's what it's called?) I'll be on a series of medication every day for the rest of my life. I don't get to eat pizza and french fries with my child like most people can. I'm going to live in constant fear of this spreading and getting more severe over time. I'm just...scared. The more I read online the more I cry, I feel consumed by this.
Again, I apologize for how lengthy this is, and how emotional I am. I'm hoping someone can make me feel better about this condition, and show me that there is light at the end of the tunnel. This is all very new to me and I'm terrified thanks for reading.

Hi C.Differently. I'm sorry to hear that you are going through this. I was diagnosed in 2009, prior to children so I can not imagine what it is like with a new diagnosis and a baby. For some comfort, I can tell you that I breastfed both my littles while taking Lialda without issue. My two are 4 and 2.5 and I can tell you that while you will have your challenges, it is best to try to stay positive and take one day at a time. I am 8 years in and am still emotional, even more so since becoming a mom; which has also given me anxiety. Something else I will tell you is...don't forget that although you are physically and mentally going through all of this, don't discount your spouse and their feelings; it can get exhausting for them too.

Thank you for all your words of encouragement, I appreciate it so much. Everyone I know just keeps saying it'll be okay but I feel like they don't really understand, maybe I'm just being overly emotional.
I'm not sure what kind of UC I have, my follow up appt isn't until next month, where they will discuss the biopsy results with me. Maybe they will tell me then? Or should they have already informed me?
I'm so glad to hear you breastfed your littles without issue, I am really paranoid about my son getting any chemicals or whatever from my breastmilk after taking the meds, I really don't want this to be the end of my breastfeeding journey but a huge part of me is just so worried. Everyone seems to have different opinions on the matter and I feel very overwhelmed and conflicted.
I feel like my son and significant other deserve so much better than me, someone who will live a normal healthy happy life. Right now I feel like I'm going to drag them down into my sickly depressed cesspool I guess I'm just in a woe is me phase right now...
Lol @ "crap club", that probably shouldn't make me laugh.
I feel like I have a zillion questions and I don't even know where to start. I've only met my GI a couple times and he doesn't seem like the most friendly person in the world, I tend to be a little timid and I hate bothering people with stupid questions. But I'm slowly making a list to ask next time I see him.
Will I be on suppositories forever? Or is it just temporary? I'm not looking forward to taking them, I've never had to do anything like that in my life. Are the side effects horrible? Should I be taking probiotics too? Do you require yearly colonoscopies after being diagnosed? I don't know if I can ever do that prep again *barf*
It's nice to hear I can possibly still live a happy normal life...it doesn't feel like it right now but maybe in a month or so I'll be feeling better.

Hi Carly, this forum is a great place to start your UC education especially since you're timid. Never consider that your questions are bothersome. The more you read the forum, the more you'll see all kinds of questions that others without UC might squirm to read. If your doctor makes you feel like you're annoying him with questions or he's not answering to your satisfaction, look for a different doctor. Many of us have gone through different docs for various reasons. I'm on my 4th doctor.

I don't know if you'll be on suppositories forever but the good news is they are simple to use with minimal side effects. Some patients use them for many many years as a maintenance medication while others use them a few times a week or intermittently. In many cases, treating UC from "below" is the best way to treat your UC. My first doc was a moron and I didn't even know about rectal meds. My second doc prescribed enemas and they helped me so much. I personally believe if I had been managed better in the early years of treatment, I would not have needed remicade when I did.

I can only imagine how overwhelmed you are feeling with your new dx while still breast feeding. I know the moms on this forum will be of great help to you. It's really important to start taking your meds. Mesalamine is the foundational medication for UC. If your disease becomes unresponsive to mesalamine, you will need to work your way up the medication pyramid. Don't lose your opportunity with mesalamine by delaying treatment.

How often you get a colonoscopy depends on the severity of your disease, your GI doc's standard of practice and the length of time you've been diagnosed. I've been dx with UC for 16 years but in hindsight I've had it at least for 20-25 years. After 10 years, our risk for colon cancer increases so we need to get scoped every 1-2 years at the 10 year mark. Personally, I prefer every year since I've already had polyps. We are all in agreement that the bowel prep sucks. There are several options and I prefer the miralax/Gatorade prep. Everyone has their preference.

Keep educating yourself and I promise you will start to feel less fearful.

@momto2boys thank you so much, it's really nice having a forum to vent and get support. I'm hesitant to take Rowasa (sp?) while breastfeeding since there doesn't seem to be much reading material on it online. But he is so dependent on the boob and the thought of weaning him makes me cry (though today everything is making me cry) but taking lialda and rowasa while bfing makes me worry it's going to be more harmful than good

All mesalamine-based medications are 90 percent topical and 10 percent systematic: canasa suppository, rowasa enemas, lialda, etc. There is a small amount passed through breast milk.

A new diagnosis is always shocking and we go through many emotions. Eventually we accept it and realize we need to go about our daily lives. We live mostly normal lives with UC.

Only 25 percent of us ultimately need surgery, and 75 percent don't. Odds are you won't need it. The most common surgery for UC is an IPAA or j-pouch, and no colostomy bag is needed.

If you don't want your UC to spread then it's essential that your comply with your prescription meds. Noncompliance can cause flares, and your UC to spread in extent in severity.

Always take your meds whether you feel good or bad. The majority of UC patients take a maintenance medication of some form, what that will be depends on what you need to achieve and then sustain a remission.

The first advice I ever got from posting on Healingwell.com was to seek a counselor to help me through things. I brushed it off until this very day.

After a month of toying with the idea of medication, I'm officially on day 2 of medication and just had a major meltdown. I basically cried my head off to my fiancee, apologized for being crazy, and somehow came to the conclusion that hearing "it's going to be okay" and "just take care of yourself" is the worst thing for me right now. I actually asked him to only respond with "I'm here for you" and just to hold me. Its all I can handle without breaking down. Well...I actually still break down but its different. Hah!

There is so much fear associated with accepting this condition into your life. So much frustration, lack of control. So much, 'why me' and 'how could this happen' and 'this is my figgin life now?!"

There is how we feel physically (which is bad enough already). Then there is how we are feeling mentally (a whole other beast). For me at the moment, my mental/emotional state is as disturbing as what I'm seeing in the toilet every day.

I realized today that I'm not doing well with the transition, and I DO need someone to help me through it. (Thanks healingwell!) My loved ones aren't cutting it right now, bless their hearts.

Breathe deeply.
Trust your strength.
Don't forget to laugh.
Seek a support system that is right for you.
Ask for what you need.

I'm wishing your symptoms to magically disappear. I'm also wishing you strength and big sighs of relief. We all deserve it.

I'm just going to continue my ranting here instead of making a new post.
Sorry if any of these questions or statements seem stupid or paranoid. I'm also sorry for always saying sorry, I hate feeling like a bother or like I'm being over dramatic.
I'm so scared of this disease. I feel crippled by the fear. I've been crying for two days straight and I just can't seem to cope with this. I can't live the rest of my life with this fear and a looming feeling of dread. I'm so scared of my future. It seems so grim now. 3 months ago my biggest worry was how much becoming a new Mom had changed my life and I wasn't nearly as social or having as much fun, I would give anything to go back 3 months ago and feel like that again. I love my son so much, and he deserves so much better than a Mom who is going to be sick the rest of his life. I am terrified of needing to get surgery one day, maybe numerous surgeries, I don't want to have constant drs appts and changing medications to find ones that work, suffering the side effects and praying I'll find the right balance for me, what if the medications stop working one day? What if I need to get my bowels removed and I need a bag of some sort? Will I ever go a day without thinking about this? Will my life ever go back to normal? How did this become my life over night?
I am not strong enough to get through all of that. I can barely make it through a day right now. Why is this happening to me. What did I do to deserve this. I'm barely eating, I'm scared to eat anything. My poor toddler just watches me cry all day and I'm being a terrible mother.
My insurance doesn't want to cover the lialda and wants me to get the generic kind, my GI Dr isn't calling me back to work with me on this.
I want to curl up in a ball and sleep until this is over. I am not strong enough to handle this.

I am newly diagnosed, mother of three. First of all (((HUGS)))! I breastfed all three of my kids to age 2.5-3. I opted to be awake for having my wisdom teeth removed because the meds were more friendly to breastfeeding, so I understand making sacrifices for our kids. Everyone is right, however. Taking your meds will go further in being there for your family and regaining your life than anything else. Personally, I have seen my dad be in remission for almost 10 years, while my brother has flared almost constantly for years partially because he has not taken any meds for a long time. To me, I have seen first hand the big difference taking the meds and getting on top of things makes. I wish that I had been diagnosed before I became so ill that it feels like I am never going to regain my strength. Little ones are resilient, and you are still oh so valuable. I wouldn't recommend asking most pediatricians/obgyn's about breastfeeding and drugs because the truth is they frequently have very little training on such things. If you were to call La Leche League, (Look them up online, and find a semi local group) they have fantastic resources on drugs. Instead of just telling you a yes or no answer, the resource they have will tell you what tier a drug is in, and what its life is in your body. Because they are not medical professionals, they cannot advise you how to interpret that information, but I find that it is enough for me to make an informed decision. No, it might not be the very most ideal situation, but so much of our world is honestly like that. We can only do our best. How are your symptoms? When I finally got my diagnoses, I was going 15 times a day and really couldn't do anything but go to the bathroom and get my food. I came home after being in the hospital for a week, and was practically bed bound for a little longer. I was to sick to really care about to much, but I still had a few good cries. It does feel like a big loss. My children are a bit older at 5,9, and 11. They still tug at my heart, like when my 5 year old tells his daddy that he doesn't want him to go to work because mommy still isn't cooking, and he will have nothing to eat, or when my 11 year old gets depressed because she had to drop out of things because I cannot take her. Your little one will be happy just to be with you at his age. I tell you this because I want you to know you are not alone. I am mostly optimistic that things will get better. It might take a while, but we can get our life back. I have already been through getting sick 10 years ago when I was pregnant with my middle son. I got worse after he was born, and finally figured out I was at least gluten intolerant. I didn't have insurance, so I may never know if I am celiac. I learned from that experience that there are things out there that can help. As far as meds, I would see if your insurance has an online portal. My insurance has a tool that you can look up a drug. If they do not cover it, other covered drugs pop up. You could then communicate that list to your doctor's office. That might speed the process up. Again, hugs!

C.Differently said...
Hi all
I'm new to this board and just wanted to introduce myself and rant a bit. I apologize in advance because this will probably be very long and all over the place.
I'm Carly, 28 years old and recently diagnosed with UC. I went into my colonoscopy expecting that diagnosis after diagnosing myself with UC or colon cancer (thanks to my medical degree on google :P) anyways. I had my scope on 2-13-17 and don't remember a whole lot from the day due to being sedated and whatnot, I was whisked out of the hospital in a daze with very little paperwork explaining anything to me and 2 prescriptions. Lialda and some type of suppository. I have yet to take either yet due to a combination of my insurance and pharmacy not communicating well and my fear of taking medications. I have a 19 month old son whom I'm still breastfeeding, he is very much a boob addict and comfort nurses very frequently throughout the day and night. My GI told me it was fine to continue breastfeeding while taking this medication and from what I've read online a majority of people/drs agree with that but I'm still very hesitant. I don't feel comfortable nursing him while taking medications, I don't want to stop breastfeeding for many reasons, but I'm scared for my health if I don't start taking my medication soon.
I've also found myself being extremely emotional, and have been crying most of the day. I've always been so healthy...4 months ago I was completely fine, and now I feel like my world has been turned upside down. Don't get me wrong, I'm extremely grateful I don't have cancer, but I can't help but feel like this is the beginning of the end. This is how I'm going to die. I can't see any light at the end of the tunnel. One day I will get colon cancer, or I'll have to get surgeries and end up with a colostomy bag (I think that's what it's called?) I'll be on a series of medication every day for the rest of my life. I don't get to eat pizza and french fries with my child like most people can. I'm going to live in constant fear of this spreading and getting more severe over time. I'm just...scared. The more I read online the more I cry, I feel consumed by this.
Again, I apologize for how lengthy this is, and how emotional I am. I'm hoping someone can make me feel better about this condition, and show me that there is light at the end of the tunnel. This is all very new to me and I'm terrified thanks for reading.

Hey Carly,
I'm still breastfeeding my nearly 24 month old and she is healthy as a horse--only ever had a couple of head colds and mild ones at that. I take a lot of mesalamine and I've taken other things too, but nothing has shown to affect her.
Breastmilk is magic--I believe it will prevent my daughter from developing autoimmune disease--maybe if my mom had breastfed me I wouldn't have so many food sensitivities and chronic illness. Studies show these medications don't affect the babies or the docs would never say they're ok. And you MUST take care of yourself and get your disease under control. Or you'll be like me--laying on the couch all day while my toddler watches too much cartoons, wishing I had paid more attention and taken better care of myself and avoided getting this sick. Best wishes to you!

I feel you on the emotional part. When I was first diagnosed I cried every day for 2 weeks every time I thought about it, talked about it, or did research. I even had a complete breakdown at a doctor's appointment and he recommended that I go see a therapist that specializes in chronic illness. I was very hesitant about going but once I went it was a huge weight lifted off my shoulders. I only went 4 times, but now I look at my UC a completely different way and I am okay with it now.

"Do not weep. Do not wax indignant. Understand."-- Spinoza

You think this is the beginning of the end? I was a freewheeling 28 yr old. Decided it was time to grow up so I'm putting myself through college. A month ago I start what we are all familiar with. No insurance, poor family. can't even afford a real diagnosis. I am proud and I hate looking for handouts but I guess I have to. So I will go to a gi he will confirm what I know and tell me to get these meds. I will say I can't afford them until I get insurance he will shrug, drop some free samples in my hands and hand me a bill for $xxx and not think twice. Meanwhile I am losing blood each day and will eventually become anemic and boom! Hospital: I am now a debt slave to the disgustingly inflated And broken health care system. I am dying.

You are getting your life back and on a real path to recovery. With a new family who needs you to dig yourself out of the emotional hole you are in and fight back.

So do what I'm doing and datamine like crazy and see how these other healingwell sherpas handle it and what they went through. We have all had our life stolen to some extent.

(I am hoping this works twofold I feel better for dumping my
Pent up emotions and you will take my advice while saying "at least I'm not that guy"

Post Edited (boogee9) : 2/24/2017 7:39:06 PM (GMT-7)