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Hi all,

I am a 24 year old female who has been diagnosed with Ulcerative Colitis since May of 2014. Since my diagnosis, I have had an extremely hard time coping with the fact that what I once thought was "normal" for my life has been completely changed. Even harder is that I don't remember what it is like to be normal. What is normal anyways?

I've recently been undergoing a really, really bad flare up that my body just can't seem to shake- going on 4 weeks now. To try and rectify the situation, my doctor has simplified my treatment and has taken me off all of my medications (Lialda (mesalamine) and Uceris (low dosage steroid)) and has put me on prednisone. This is the first time I have been put on high dosage steroids (60mg prednisone) to try and reduce my inflammation, and it just doesn't seem to be working. I am not getting worse, but I am not getting better. I cannot sleep through the night without waking up 5-6 times to go to the bathroom, and each time I do, I am drenched in sweat.

I am tired, emotional, overly-sensitive, feel like no one understands, and most of all just frustrated and fed up with my body. I am trying to look on the bright side of the situation, but I just can't get rid of the negative thoughts.

Is anyone else struggling with coping with their UC diagnosis? Has anyone tried anything or done anything that has helped them feel better? I feel like I should be at the point where I know flare ups like this may happen and I just need to roll with the punches, but I'm not. Hopefully I am not alone in this. Thanks :)

 Reply posted for southerngirl.

As a retiree from a university, I encourage you to go home and care for yourself. Who cares what people say? If they're unsympathetic, what they say doesn't matter. College is too neat an experience to squander when you are battling this disease. Go home, de-stress, and return to college when you are ready. It's never too late to return. Bless you.

 Reply posted for phytoscience.

I'm right here with you. Diagnosed back in March 2015.... Just started getting my 3rd flare up a couple days ago:( I feel awful and don't know how to jump on the positivity train. Usually I'm pretty good with it but now getting another flare is crappy. Even though I know this could happen it's still shocking:(

 Reply posted for bacurran.

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 Reply posted for christina579.

Boy your story sounds a lot like mine, except that I have two kids who have not formally been diagnosed, and I hope that never happens. I too feel like I can control "when it hits." It's the weirdest thing. Also sometimes I want to be on medicine to make it go away as fast as possible but other times I don't want to be on anything and just try to control it with my mind. That's what I'm trying to do right now along with aloe vera juice, probiotics, Pepto-Bismol, Lialda. For me that's a minimum medication. I've been on Prednisone for about 2 years of my life and that's more than I ever want to be on. That stuff is awful. Although I will say it has put me in remission every time. But I'm scared to death of all the side effects I am forced to hear about every time I go on it. Anyway I hope the best for you. And for me. And all of us.

 Reply posted for sslavsky.

I've had UC for 25 years. Sometimes I'd have a flare for 2 years and then go into remission for 2 years. I'm now 66 and am having  a flare, blood, diarrhea, etc.  I'm not handling it as well as when I was 35.  I seldom go out and when I have to I dread it. 
I'm on 40 mg prednisone and 2400 mg delzicol,  My friends are supportive and say positive things but they're healthy and don't really understand. People say I'm out going and laid back but  I'm dying inside. Knowing where to go  bathroom so often.  Finding a bathroom in public is not always easy even when you plot out where they'll be.  Then you get there and  someone beat you to it.  I use to have a positive out look but I've resigned myself to knowing tomorrow will be like today. Both psychologically and physically. And to top it off I take 4 medications for refractory epilepsy.

I apologize  to everyone for being such a downer. 

 Reply posted for sslavsky.

I understand completely, i was diagnosed in january and i haven't been in remission at all, i am constantly tired, going to the toilet in pain etc. (you get it) and have been stressed and angry the whole time, im struggling so much but its kind of helpful to know other people understand, i don't have much helpful advice except that you are not alone and there are people out there who get you

 Reply posted for sslavsky.

I understand completely, i was diagnosed in january and i haven't been in remission at all, i am constantly tired, going to the toilet in pain etc. (you get it) and have been stressed and angry the whole time, im struggling so much but its kind of helpful to know other people understand, i don't have much helpful advice except that you are not alone and there are people out there who get you

 Reply posted for old fashion.

I can sympathize with everyone, I have had it since I was 23 and my 10 year old got diagnosed at 5. Talk about guilt!! His is doing good finally, we have him on a regimen that works! I haven't been on anything for years because it seemed to go into remission on its own. But it's back unfortunately and boy does it control my life. I've gone from wanting to do everything to wanting to do nothing because of it. I'm also very emotional and moody because of how my life changed overnight again. And nobody seems to get it, it's as though I can control when it hits. That's probably the worst part for me, is nobody knowing how I feel. I just want to lay in bed and cry because it can be such a debilitating illness, especially while waiting to get on medication. I get sympathetic looks and head shakes in pity when I have to say why I can't go do something but I don't want that. I just want someone to say "I don't know exactly how you feel but I got your back and let's figure out something else fun" instead of making me feel bad over something I can't control. Sorry, think I started venting more than anything. But none of you are alone in your feelings. I feel like I haven't slept, or smiled in weeks. I'm sick of being in the bathroom, laying down and jumping right back up! I hope you all find some peace with yours!

 Reply posted for southerngirl.

I totally understand you. I'm only 17 and I was diagnosed only a few weeks ago. I've been having a flare for almost two months and I have been so emotional and hostile towards my loved ones. Normal life seems like a distant memory. I look on the bright side and think, at least I got diagnosed. At least there's medication and docotors out there who want to help people like me (and you). I hope you feel better soon. I know how debilitating flares can be at times. Just have to hold onto that little hope and take your medication every single day :)

 Reply posted for sslavsky.

I completely understand where you're coming from. I'm 18 and moved to college a few months ago and have felt sick literally since I moved in. My symptoms are increasing and so is my stress level. I feel like a crazy person for wanting to move back home when I've only been here for 2 months but I don't think I can permanently stay here. I know it's super hard to keep stress levels low but I know that it does help to have lower stress if you have anything that alleviates stress. I hope you start feeling better soon!

 Reply posted for sslavsky.

I feel your pain.  I have collaganous colitis and just had a 6 weeks flair after contracting a stomach virus. My grandkids had the same virus with nausea and headache and no appetite. They were only sick for 2 days and its bee 42 days for me.  My GI doc who I love says the flu morphed into "Infectious motility disorder".  Maybe this is kind of what lots of us get.  Pepto Bismal did not help, Librax did not help, Klonopin did not help.   THen I found an aticle from Johns Hopkins Hospital that said Benedryl helps for chronic naseua.  Guess what it works!!!!  At least I am sleeping a little better and not feeling like I'm going to throw up in the middle of the night.  I am eating VERY small meals every 2 hours , drinkiing lots of water, started Probiotics again and starting to feel a little better after 6 weeks. I am seeing a counselor because I think my friends get tired of listening to me and maybe think I'm nuts. My older sister is starting to have digestive problems and so did my mother.   My doc says on top of colitis I have GERD and gastro paresis (which is slow digestion).  Hang in there it will pass in time.   Try to keep busy and do things you like to get your mind off of it.  Walking helps me and I am taking a watercolor painting class which is relaxing..  Try the Benedryl at night, and remember doctors dont know everything.  Go with your gut (no pun intended) to do what helps you.

 Reply posted for buscaglia.

It is so nice to know that WE are not alone!! Thank you for taking the time to respond to my post- it really means a lot to me.

I know what it is like to be in the bathroom 15 plus times a day- it is not fun. And the prednisone-- no fun either! I have about 5 more weeks on it and cannot wait to feel like I have control over my emotions again.

I am so sorry to hear that you were unable to find the right care for you in Canada in regards to your UC, but I am glad that you were able to come back to the states to get things under control.

Thoughts of failure and weakness run through my mind a lot, too, so I am right there with you. At least for me, no matter how many times I try to explain my disease to someone, they just don't understand the severity of it and how debilitating the disease can be. It is extremely frustrating. However, the people that do understand make all the difference and are the one's that are going to help pull you out of the rut when you just want to give up.

I am looking to make friends as well- so I will email you. I am always here to listen and be a support system-- you are not alone. Here's my email address just in case: suzslavsky@gmail.com

I hope you start to feel better soon :)

 Reply posted for bacurran.

I really appreciate you taking the time to respond to my post. I hit rock bottom and felt like there was no way out. It was the worst flare that I have ever had.

I am so happy that you have been able to find strength and courage through your diagnosis. It really is a life changing disease- in ALL aspects-, which can make or break you. It is encouraging and uplifting to hear how you have taken your diagnosis and turned it into something positive in your life. Something that fuels you to want more and to be appreciate of all that you have.

I feel like I have waves of positivity, but can't seem to find the silver lining when I get back into a flare and am in the bathroom 20 plus times a day. It's just one of those things that I am struggling with. But I know I will eventually get there. There are so many different things in my life that inspire me and bring me happiness, and I need to work on focusing on those things when I am feeling depressed and "bad for myself." It could be MUCH more, and for that, I am thankful everyday.

I hope that your flare eases up and that the Liadla helps you-- It helped me for a good amount of time, but my doctors are looking into different long-term meds for me now.

If you ever need a support system or someone to talk to in the future, I am always here to listen! suzslavsky@gmail.com

:)

I want to express my thoughts to inform you that you are not alone. I am 24 years old also and have been  recently diagnosed with UC a month ago. Right before my colonoscopy and 40mg prednisone prescription, I was a mess. I was up to 15 times a day in the bathroom with three times during the night. During that time I was living and working in Canada. Not having health care in that country I came back to the states to get help. I was having thoughts of failure, weakness, and unworthy of people's time. To me the worst part of this disease is not knowing many people with similar experiences. I have just signed up with the support group weekly discussions through this foundation. I hope to make friends that can really relate to this part of my life. If you are interested in talking more or need support when you are feeling down you should email me: ajbomber10@aol.com. Because I am in need of support myself :)

You are definitely not alone in the struggle. After finally getting past a super resistant case of C-diff, I was diagnosed with UC last November. I was 29, feeling like I was falling apart and aging way faster than any one around me, and all before I turned 30. Dramatic and silly, but emotionally it doesn't hurt any less. I started Humira in March 2015, my immune system and my body in general has felt completely unfamiliar or weak. It's been tough, getting used to the "new me" but I've been trudging through. Last week I was put on more Lialda because I'm in a flare, I've hit a low at this news, but I'm pushing to get myself out of it. 
I could go on and on about my doubts, frustrations, sadness, etc, but the fact is that it doesn't do any good. I can't do everything I used to but I'm also battling a lot more than many will never know. I am stronger from this diease. It can, and could be much worse, whether related to this disease or something else completely. I work to remind myself to be thankful for what I do have. I am  now hungrier than ever for what I really want out of life. It is more apparent than ever how one shouldn't take life for granted.
It's completely okay (and normal) to have days where you crumble, hide in your bed and cry. Allow yourself that time, but don't let those feelings keep you in that state. Get it out and get on with your life. Take things step by step. I'm glad you're reaching out to others, that is a great way to help feel better.  Find things that inspire you or bring you happiness and make it a point to go to those things when you're struggling; it really works to help pull you out of whatever funk you're in! You can't change your disease, but it's completely up to you whether you choose to let it get you down or if you choose to pull yourself out!! Hang in there, we're all here fighting with you :)