Just Diagnosed – Looking for Support

recently diagnosed with colitis

Hey, I’m 28 years old and was just diagnosed with colitis, I’m looking for some support

I was recently diagnosed with Ulcerative Pancolitis (07-29-13) via colonoscopy + CT Scan resulting from ER visit. I have had stomach issues for around 5 years, but never considered UC as the culprit.

Some more about me:

28 year old female, currently living in Maryland. Mother of twin 7 year old boys. Married for 8 years. Online Student. Lover of reading (mostly old school sci-fi, like HG Wells). I am a gamer, a gardener, and a conspiracy theorist.

Symptoms:

What sent me to the ER was abnormally large amounts of blood and cramping. That is still present.

Just Diagnosed with Colitis – Looking for Support

I have never been one to ask people to feel sorry for me. I don’t think I am a special snowflake. I don’t like attention. I was recently diagnosed with Ulcerative Pancolitis last week, and my world has pretty much been turned upside down. I guess I just need some support and some reassurance that my life is not over from people who have been there… Family and friends are showering pity down on me, and that hurts.

I have been dealing with stomach issues for about 4-5 years. I started getting them right after I went on Paroxetine for anxiety. Not saying the instances are related, just noting it. I thought I had IBS and some stubborn hemorrhoids from the twin pregnancy. There were times when I felt like I was trapped inside my house because of a constant urge to use the bathroom. I considered hooking a camper to my vehicle so I would always have a bathroom near. A lot of people thought I was pretty much making the whole thing up, even Doctors who said there was nothing wrong with me, and family who joked I had a case of “in-lawtitis” whenever I had to skip out on seeing them. I got used to dealing with it, I cut out red meat, coffee, and mushrooms (these all seemed to make it worse). Alcohol made it worse too, but I have always been stubborn about giving that up. Maybe I am an alcoholic.

The last 9 months though, I have had pretty mild symptoms (only some discomfort and bathroom needs in the mornings) and was able to go out without worrying or having panic attacks about restrooms! I felt reborn and so happy! Well, last week, things took a turn for the worse. I had some chili for dinner and about 6 beers…I woke up with HORRIBLE cramping and way more blood than I was used to. This lasted 2 days before I became concerned about the blood loss. The Doctors ran some tests, CT Scan, Colonoscopy, some other things for 4 days, and confirmed that I do indeed have UC. A pretty severe case to have them tell it…my whole lower part is inflamed. I have lost 12 lbs in the past week.

They prescribed Prednisone and Asacol. The latter being $764 for a month’s prescription at Wal-Mart, and me without health insurance. I bought it today on a credit card because I am desperate. I struggled with the Prednisone for a few days (thankfully only $4), thinking I could go the “natural route”, heal myself without being dependent on meds. I bought Turmeric, Ginger, Fish Oil, and Peppermint Pills. Well, that lasted a bit before I started vomiting from the cramping pains, reality hit me in the face that for right now, I needed something stronger. I took the steroids…almost immediately my symptoms dissipated and I was back on my feet…until it wears off in the middle of the night. Then I am reminded that my colon is slowly degenerating and imploding on itself. I have been strongly advised to take the steroids for two weeks, 40mg a day. I will add in the Asacol (They gave me Delzicol? Seems to be the same thing?) today and see if it makes any difference.

I have read that flare-ups can last a long time, maybe even years…but remissions can too. This is my first big flare up and I don’t know what to expect. I feel pretty lost right now. I don’t want to burden my loved ones with this. I envisioned a vibrant, healthy life. I wanted to go to my kid’s football games. I know that life isn’t fair though. To be honest, I would rather lose a limb or two, maybe even an eye (I could be the cool pirate mom) than deal with this. Then at least I could still get out there, still be living, not holed up in my house feeling sorry for my self. I feel like I probably caused this with my drinking (never going to touch the stuff again) and lack of stress management. I think maybe I should just bite the bullet and get the whole thing surgically removed and rock a J-Pouch from the get-go?

I am also one of those losers that checks Facebook 14 times a day. Now I can’t really do that. I look at people posting their happy pictures, going to concerts, going out to eat, just being vivacious and enjoying life in general. It makes me insanely jealous and angry. I don’t want to feel like that. That’s not who I want to be. There are people who have it a lot worse than me. There are children who suffer in silence every-day.

What I am really hoping for is some words of wisdom for my young, panicky, anxiety-ridden self. I was elated to find this community. I don’t know what else to do. My garden is dying outside because I really don’t feel like watering it.

Medications:

Haven’t taken anything long enough to really know. Prednisone works short-term, I know that.

written by Samantha

submitted in the colitis venting area




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14 Responses to Just Diagnosed – Looking for Support

  1. Adam
    Adam August 9, 2013 at 4:16 am #

    Dear Samantha,

    I always wanted a Pirate Eye’d Mom, but please please, don’t go that far.

    I’m super sorry that you’re in the middle of a nasty flare, and most definitely the first major flare up is often the most difficult to deal with both physically and emotionally. So don’t for a second think you’re going off the looney train. (Especially if you’re still taking the steroids which is sounds like you are, that stuff can get the brain thinking some strange things, can even mess up depth perception and impair driving…you can ask a neighbors car about that if you like:)

    AND, and maybe most importantly, as awful as it is, congrats for finally figuring it out and getting diagnosed. It must have been torture for you for many many days not knowing what the heck the deal is/was. (My story is very similar with respect to that also)

    I think you’re right on with deciding to lay off the drink/alcohol. I’d bet all the money in China that 6 beers did hurt your symptoms, so cutting that out should help over time. I myself stopped drinking for several years along with other diet changes.

    One thing that you might want to do if you haven’t already, is read some of the other stories on the site in the “just diagnosed” section. That’s right here:

    https://www.ihaveuc.com/category/colitis-stories/just-diagnosed-with-uc/

    (there’s over 180 stories there, so lots of reading about others who were just diagnosed)

    AND,

    Since you’re taking Deszicol/ Asacol, you can also read up on what other UC’ers have written for reviews for those medications. That might give you some insights straight from some other UC’ers.

    here’s the link for that:

    https://www.ihaveuc.com/asacol-reviews/

    I’m sure it seems impossible right now, but soon enough you’re going to be back on your feet, and hopefully you’ll be telling other UC’ers what I’m saying here, and that’s the fact that your flare won’t last forever, and life for sure goes on and can get back to normal. Maybe sounds impossible, but hard poops without blood definitely do happen, even after the colon seems like its been ripped to shreds.

    best,

    -Adam

  2. Barb August 9, 2013 at 8:34 am #

    Hi Samantha,

    I have been there! Sucks having to stay in b/c of your fear of bathroom trips. I have had UC for 15 years now and just went through yet another bad flare back in Feb but only b/c I had c-diff which is a whole another issue. Anyway yes continue to take Asacal and steroid when they weed you off the steroids try taking a probiotic every morning on empty stomach I take Ultimate Flora you can purchase on line or at any health stores also take 2 capsules of the lglutemine again you can find this in a health store. I have been off steroids for about a month and half and doing good ….knock on wood….lol I also just started this Visalus which is powder and you make shakes or you can sprinkle on your food. This also has a probiotics and seems to help with the inflammation. When you are off the steroids and your joints start to ache and they will get the pharmacy and get some epsom salt for a hot bath! I try to soak at least 2x a week really helps with the joint pain. The most important thing is STRESS…..I think that is what brings on these flares……try to think positive no matter what and I mediate you can google mediation and find some relaxing ones. I hope all this information helps. If you have any other questions or thoughts please post that is what we are for. I am so thankful for this site =)

  3. Audrey August 9, 2013 at 9:21 am #

    Hi Samantha:

    My name is Audrey, I am 33 year old female from South Africa. I was diagnosed with Ulcerative Colitis when I was 17 years old. Right now I am going through a bad flare up at the moment and am battling in a very bad way to get through it. I can totally relate to the hell you are going through. I have been living this hell for a long time, but inbetween I did have good periods of remission. I too do not have medical insurance and I have researched the topic of our disease so extensively that I have put my UC into remission a few times without using major drugs (except Prednisone). If you would like to contact me my email address is audrey911@gmail.com and we could chat and talk about the different things I did in the past with good results and I would love to give you support and it would be nice to be able to chat to someone that knows the type of hell we are going through. Unfortunately as much as loved ones try, it is difficult to comprehend what UC is like if you do not have it yourself. The only person that I feel that gives me great emotional support is my mother as she was with me when I started getting ill the first time and has been there for me all this time. I hope to hear from you soon. Try to be strong, We are all rooting for you.

  4. ahmed August 9, 2013 at 12:52 pm #

    we all felt these feeling, anxiety and worriness trigger uc. if u avoid them, u will go in remission. i needed about 1 year to control my anxiety, anxiety and uc at first will move u at closed loop, more bleeding more anxiety which means more bleeding and more running to bathroom. try to start master study or any other studies, it would help, traveling to other country would be very good. and u r lucky u r married and i’m single :P
    anyway it takes time and also perdisone makes u sad after stopping it, u can take anti-depression drug.

    :)

  5. Emily August 9, 2013 at 1:15 pm #

    Hi Samantha!
    Boy oh boy do I hear ya! I was diagnosed with UC back in December of 2009 right when I found out I was pregnant with my daughter. I must say while I was pregnant I was on ASACOL and had NO symptoms at all, until I gave birth to my daughter and then the fun started (sarcasm). I had a HORRIBLE flare for almost 7 months, little did I know that’s what it was, I just thought this was the joys of having this disease. I was going to the bathroom probably 20 times a day and ALL blood, then when finally I started to feel like a zombie that 7th month, I went to the ER and they told me I had lost half the bloof out of my whole body and I was admitted and put on IV steroids. I must say the ONLY thing that helps for me is when I start with a nasty flare up that doesn’t seem to be getting any better after a couple of weeks and only worse, being admitted to the hospital for like 3 days and IV steroids ALWAYS calms it down and makes it go away. The whole watching what you eat thing and not drinking, I like drinking too so that always made my symptoms worse but I just dealt with it. I found that not really eating anything always helps too, maybe some crackers or bread. I know how you feel it’s awful and no one understands it AT ALL. I mean people sympathize with you and try to get it but its nothing anyone else can understand unless they live with it. I always go places where I know the bathrooms are and always have spray and just keep flushing! It’s not an ideal way to live but I think when you have a flare try the IV steroids, you can even get them as an outpatient without having to be admitted. Email me whenever if u want! *Emily*

  6. Shirley NZ August 9, 2013 at 2:59 pm #

    It will take time but you will get there. Just hang in. We have all been there and know how you feel. All the best

  7. Stephanie August 9, 2013 at 8:40 pm #

    Hi Samantha,
    I was diagnosed about a year ago after a bad flare. I lost about 10 pounds in 2 weeks (I’m tiny as it is so it was really scary). I’ve had small flares since then but haven’t felt as bad as I did last year. And I haven’t felt bad enough that’s I’ve had to miss anything I’ve wanted to do over the last year. This is my way of saying, you might not feel perfect just yet but you’ll still have your life back soon. Hang in there! :)

  8. David August 12, 2013 at 3:34 am #

    Hi Samantha,

    Sorry to hear things are so bad at the moment. They often say that the first flare up is the worst. Just bear with it and do all you can to get healthy. Once it is over then you will hopefully be able to enjoy a happy and stable remission.

    Your life will return to normal and you will be ok but I completely understand how shitty it must feel at the moment.

    Stay sane!

  9. Holly in Virginia
    Holly August 12, 2013 at 7:55 am #

    Hey Samantha,

    I was diagnosed with severe pancolitis in January. I live in Virginia. Sorry things are going so badly right now but it can get better. With the lack of insurance you may want to ask about drugs that come generic. I was initially put on Colazal which came as a generic. It’s not as convenient as Asacol as you have to take 3 pills 3 times a day but at least it’s cheap. There’s also one called Apriso that I’m now taking. They have a savings card so you save up to $110 a month. http://www.aprisorx.com/

    Hope you get better soon. Try your best to stay positive.

    Holly

  10. Ann August 12, 2013 at 12:06 pm #

    Hi Samantha, I can truly relate to what you are going through, dealing with uc since 1988. I’ve been to the ER about 3 different times during the first 10 years having UC. I now avoid the ER as much as possible and go for my colonoscopy about once a year. I really don’t even talk to my doc unless I having the colonoscopy. I don’t have much to say to him since I know there is no “cure.” I am having a pretty bad flare myself at the moment. Since October of 2012, I’ve been trying to keep this under control without using meds. I thought EVOO was the answer in March 2013 and have been hoping probiotics and Lglutamine would get it under control since I started those in July 2013. Nothing yet. I am getting really frustrated and somewhat pissed off that I can’t get the bleeding to stop. I just had my worst weekend yet this year. The toilet is filled with red blood at night and black blood in the morning! Lovely, isn’ it? I’m not giving up yet…tonight I am going to see a person who does “healing hands”. I told my husband if this doesn’t work, I will go see my doc. I am sure he will put me back on asacol “for life” and prednisone until the bleeding subsides he will also suggest Remicade – no way. I know the story blah blah blah…I might try the SCD first but the clock is ticking…and by the way, I love to sit on my deck in the summer and drink wine in the evenings…I might have to give up the alcohol too! It really sucks! You are a beautiful girl…this makes it difficult too…I’m a pretty good looker if I say so myself and it is really hard for people to see how great you look on the outside and understand how awful you feel on the inside. I’m sure you can kick butt in a major way but this disease really kicks your butt right back at ya! Keep trying to find ways to fell better. Listen to your body as much as you can, it has a way of talking back. There is hope and there are good days ahead. Please reply to me if you would like to talk more. Cheers! ;)

    • Barb August 12, 2013 at 12:36 pm #

      Hi Ann,

      Try upping your Lglutamine to stop the bleeding. I totally agree with you about the Remicade I am exactly where you are right now I am still taking the Ascal b/c it is working but once this stops back on the steroids and then on the Remicade that is if I have another flare. Just go over in April and been taking a probiotic and the lglutamine and the Ascal. Next week I am going to try to just take 3 of the Ascal instead of 6. Wish me luck =)

      Barb

  11. Ann August 12, 2013 at 12:42 pm #

    I will up the LGlutamine…I wish you luck…thanks for the advice.

    • Barb August 12, 2013 at 1:08 pm #

      No problem. Hope it works. Let me know how you make out.

  12. Sharon August 12, 2013 at 6:56 pm #

    Samantha, I have had UC for over 23 years. I have 4 kids ages 15,13,9, and 7. Almost exactly 3 years ago I had a horrible flare and ended up in the hospital the first week of school. I had been so sick that I hadn’t bought most of the supplies and my neighbor took my daughter shopping for a few outfits to start middle school. I was so sad to see the pictures and know what I had missed. Believe me, I understand how hard it is to “mother” when you feel so bad. Having said that, there is great hope. I just got back from vacation where we went tubing down a river for 4 hours (NOWHERE to potty and I wasn’t even concerned). All this after a 10 hour road trip and many other summer outings I could never do in a flare. I have periods of flare ups and very long (sometimes years) of remission. Every one is different and there are many ways to reach remission but I think most of us would agree that you will learn to know your body and your symptoms well. You will be your own best advocate. For example, when I feel that rumble and bloating, I lay off of high fiber and alcohol and milk. When I feel good, I may have a glass or 2 of wine or an ice cream sunday. btw, I only drink white wine now-no beer-ever for me.

    Right now, your body is run down, you are mentally run down, and you are frustrated. We all get that. We have all been there. It took me many years and a near death experience to finally be at peace with this disease. For me, my faith is stronger, I am forced to slow down, and I appreciate things like school supply shopping in a much more profound way.

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