Emotional Roller Coaster

Shannon D FullMy name is Shannon, I am 21 years old and I found out I had UC when I was 17. When I found out my family and I weren’t really sure what to expect because we had never heard of this disease.

Some more about me:

I must say I don’t really have an actual “hobby” I enjoy being around my family and friends. I am from a small town in Ohio, and if you’ve ever been to Ohio then you know there isn’t much to do.

Symptoms:

Currently my symptoms are very bad. I am bleeding with every stool about 6 times a day and I am vomiting. I cannot hold anything down and if I drink something I am going to the bathroom immediately and at least 3 times, just for taking a drink. I feel very inflamed and the prednisone didn’t work this time, usually it works like a charm. My doctor tried me on Remicade and that didn’t touch anything either. My doctor said he is now out of options for me and isn’t sure what to do besides surgery and going elsewhere for more opinions.

Emotional Roller Coaster

When I found out I had UC I was 17 years old and a junior in highschool. For being a young junior and having to run to the bathroom about 10 times a school day it became pretty embarrassing. I was going all day long, as soon as I woke up maybe 3 times before leaving for school and about 7-10 times a day at school and even more when I was home. Driving to school sometimes was the worst, it could be a freezing winter day and I would have to go on my way and I would need to roll the windows all the way down so I wouldn’t sweat and get all worked up.

I told my mom about my bathroom issues and she called my family doctor and he wanted a stool sample, I went in and gave him what he needed and a few days later we got a phone call that it looked suspicious and we needed to see a specialist. After searching for a doctor and asking around we found one we really liked. I went into him and explained all of my symptoms and he scheduled me to have a colonoscopy done.

For only being 17 I had no idea what I was getting myself into. I will never forget the day I had to prep, they gave me an option to take pills or drink the nasty drink, I opted for the pills. The next day feeling miserable I had my colonoscopy done and that’s when we found out what UC was. He started me on enemas at first and those were very uncomfortable but I got through it. Over the years my symptoms have worsen and I was feeling extremely “swollen” and he placed me on prednisone, this medicine worked great except for some of the side effects I got. I got terrible night sweats and I was always hungry! The prednisone worked for a very long time though and I never had flare ups, I felt great everyday.

After a couple years I started to bleed and it got so bad that I was hospitalized and I needed a blood transfusion, if I had seen all the blood in the toilet I would’ve acted on it but I never saw any, my stool was always very dark and no blood was seen. After that he upped my prednisone and I was all good again for another couple of years.

Now at 21 my flare ups have been terrible, I started bleeding again and was hospitalized, another colonoscopy was done. My doctor put me on Mesalamine and I was doing great for a few months at least. Now it has all been down hill from here. I am now hospitalized again, the bleeding and inflammation won’t stop or go down. I was admitted on 9-18 and started off with high doses of prednisone thinking that would help and everything would calm down. After 5 days of high doses of prednisone nothing was working, my doctor talked with me and my mom about a medicine called Remicade. We tried and gave that a few days to take effect but nothing. At this point I am not able to eat or drink anything and the only thing keeping my hydrated is my IV. My doctor wanted to do another colonoscopy and see if there was anything else going on, and it turns out my colon is getting worse and he says he’s out of options and we need to start looking for different hospitals to go to and get more answers. So that is what we’re currently doing, sitting in the hospital and researching and trying to find some place else to go. Surgery is my biggest fear and I’m extremely depressed, not sure what to think. This is my story so far, just sitting, waiting, losing too much weight and not able to keep anything down and crying, a lot of crying. I wanted to share my story to try and make myself feel a little better and let others read. I’m just not sure what to do at this point.

Medications:

In the past prednisone worked really well for me, the inflammation would go down and i would be golden. Mesalamine also worked really well for me for awhile. One medication that didn’t seem to work at all on me is Remicade.

written by Shannon

submitted in the colitis venting area




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

12 Responses to Emotional Roller Coaster

  1. Manuel October 3, 2013 at 5:04 am #

    Hi Shannon,

    I am sorry to hear that your flaring again and in the hospital. I just wanting to chime in as a man that just recently under went j pouch surgery to get rid of my colitis, I can safely tell you your worries about surgery are normal but I can almost guarantee you will feel a million times better immediately following your first surgery. I am two months post takedown (meaning they took my ostomy bag off, which I might add I only had for 4 months) and I feel great and normal again. I won’t lie to you there is struggles you deal with as a j poucher, in the beginning but trust me its nothing compared to the horror of the daily struggle of having colitis. I feel like I can share tons of information with you about my story and the surgery, if its an option for you.. if not trust me the ostomy is not bad either. If you’d like feel free to e mail me and I’d love to try informing you of some of the options out there to ask your doctor or potential surgeon about. My name is Manny and you can reach me at Manuel.Loya13@yahoo.com

  2. Sarah October 3, 2013 at 5:36 am #

    Sorry to hear this Shannon, my story is almost exactly like yours only this time two years ago… I’ve had remicade twice but it only really worked good the first time… I’m now on pentasa granules twice a day with probiotics and eating no bread and I’m seeing an improvement :) keep positive !!! X

  3. John October 3, 2013 at 5:51 am #

    Shannon, hang in there. I’ve been through a really bad flare the last few months also. I too saw no relief from the Pred after a week. It eventually started to work after 3-4 weeks, so it can just take time. Hope it all works out.

  4. Tom
    Tom October 3, 2013 at 6:16 am #

    Shannon

    Can you ask the hospital whether they can give you an IV drug called Ciclosporine (Sandimmune is its US name i believe)

    Ciclosporine got me into remission and out of hospital which allowed me to make my desision on surgery. Had first stage of surgery on 1st May and haven’t looked back.

    I can’t stress enough how unless its absolutley nessecary, it is much better to have surgery when you’re not flaring as this can make it really difficult for the surgeon.

    SANDIMMUNE – ask and see what they say

    All the best

    Tom

    • Madecena enriquez October 3, 2013 at 7:23 am #

      Hi Shannon, im sorry to hear that,i myself was also the same situation as yours.,i was diagnosed this summer but i have this symptoms on n off early this year,extreme fatigue, weight loss,bleeding,night sweats n anemic,i was working as a caregiver part time,a mother of four,n quite busy almost everyday bec. Of my children…until i cannot make it this month of June,i was brought to er of my husband bec. Of severe pain of my abdomen,bleeding,rectal pain n joint pain, i was actually admitted to the hospital right away bec of severe dehydrated,loss of potassium,magnesium,n electrolyte, n i undergo almost three blood transfusion,i was really very pale ,n they gave me alot of med.i was in the hospital for a month, they put me on asacol,Canasa supp.cyclosporin,some antibiotic,but nothing worked,lots of ct scan too,x ray ,MRI and they found out i have pancolitis and they did sigmoidoscopy too until they found out i have cmb infection, gave me valcyte for that infection, lots of med. too, i been in prednisone too until they taper it off now bec of serious side effect.im on remicade now,i will be in my fourth infusion, but stil i have bleeding,10 to 15 times a day,pain on my rectum,joint pain,i feel like they taken my life on me,i tried not to get stressed bec it will ruin my symptoms.i just had my 2nd colonoscopy lst week,n they said it still the same n they want me to consult to a surgeon, im scared but im also tired of this disease, so just hang on, you are not alone, if you need someone to talk too,were all here for you,im trying to be strong for my kids,im 40 yrs. old, live in phila.n im Filipino.good luck to you n hoping that there wil find a right med. for you.god bless you….

  5. Richele
    Richele October 3, 2013 at 7:51 am #

    Hi Shannon,
    Gosh girl, you really are in a bad flare right now :( I’m so sorry! The hospital can seem like such a hopeless place, it’s scary when it seems like you have no control over what happens to you. You will survive this!! You won’t be in there forever and you will come out of this flare.
    Surgery sounds horrifying to me as well, and I have never even considered it. I won’t give up on my poor little colon just yet. Somebody once said on here something like “The colon will remember how to function properly again” or something like that….I believe it will too, and medication isn’t always the answer. Prednisone can make you feel depressed, and angry and miserable. Remicade didn’t work for me either, neither did 6mp, Imuran, Asacol, suppositories, Colazol….nothing. I recently eliminated grain and junky processed food from my diet and that seems to be helping, but marginally….gotta keep on looking for something that works.
    Hang in there Shannon. Lot’s of shoulders to cry on in this place :)
    All of my best wishes and healing thoughts to you,
    Richele

  6. Juliet
    Juliet October 3, 2013 at 8:09 am #

    Oh Shannon I really feel for you! You certainly have had it tuff! Glad you have your family and a doctor you like.

    The thought of surgery is scary. I’ve not been there…yet! Though it is becoming more of a consideration. Maybe if I’d had better advice on diet years ago. I’m at the point now where I’m flaring really bad and prednisone isn’t touching it. All past medications stopped working too.

    If you are thinking about surgery make sure you ask lots of questions, do your own research, read others posts on here and don’t be afraid to express your fears and concerns. Even if you want to get a second opinion on treatments from another specialist, it’s your right to. It’s still your body!

    I’ve been miserable lately due to UC and it does get very scary and you can feel so alone. I just try to remind myself that I’m still here with lots to be happy about even when it doesn’t feel that way. I hope you find a way to get this under control and get out of hospital soon xxxx keep us updated on how you’re doing.

  7. Stephanie October 3, 2013 at 9:25 am #

    I agree with Tom. I, too went through a very bad flare during my senior year of high school. Being only 17, I was scared to death of surgery! I didn’t have nearly the amount of information that is around today, but when my doctors told me that surgery was basically my only option, I was mortified. Being in the middle of a flare and so dehydrated and anemic, they said that if I did have the surgery then, there wasn’t a guarantee that after the j-pouch surgery was done, that I could ever get the reversal. That scared the hell out of me!
    That’s when I was told about a drug called cyclosporine. Because of my age, my doctors had me transferred to CHOP, a children’s hospital nearby which had doctors who were more family with dealing with these issues with someone my age. It took about a week or so after I was finally on it to start seeing some changes. Once the flare was finally under control and I was released from the hospital, my doctors urged me that, because my first major flare up was so bad, that I should look into getting the surgery when I was feeling better so that my body would be able to heal better.
    So that’s what I did. At age 18, I made the (scariest) decision to have the j-pouch surgery done when I was feeling ‘good’ and as healthy as someone battling UC can feel. And six weeks later, I had the reversal done and haven’t looked back since!
    I am currently 34 and have had no real issues since my surgeries. I have had the occasional pouchitis which is quickly settled with a round of Cipro, but otherwise I am able to eat, drink, and be merry with little or no thought of my UC!
    I think you’re doing the best thing by reaching out for as much information as you can get to make the right decision for you and your situation! Good luck and keep us posted! Remember, you’re not alone!! :-)

  8. Joanie October 3, 2013 at 11:08 am #

    Just want to send you my love and prayers. You are very strong. God will see you through. Keep us posted. Hugs!

  9. Don
    Don October 3, 2013 at 12:16 pm #

    Hi Shannon! I am sorry to hear of your suffering. I always get choked up when I read stories like yours because I know the pain, the hopelessness, confusion, and fear. The Specific Carbohydrate Diet really helped me when I was quite bad off after getting out of the hospital. Prednisone also works good for me at 60mg/day when I am flaring. I am going to do home fecal transplants starting next week in the hope that changing my gut bacteria will cure me of this. That is plan A. Plan B is a new drug that may be approved next year called Vedolizumab. You can follow along with me as I attempt to cure myself here http://donmakowski.blogspot.com/2013/08/name-is-don-makowski-and-i-decided-to.html
    I hope you can find some relief and get better soon. Hang in there. There is hope. We are all in this together. If I can do anything for you let me know.
    Don

  10. rjw October 7, 2013 at 12:36 am #

    Shannon,
    Gather no one will have the answer for you. I would like to say that if you were up to it to try what Don just mentioned. SCD diet and start researching FTM or fecal transplant. Many talk about their success with the SCD and FTM. You can find out more on this site as Adam has many blogs discussing both. The we is also full of information on both as well as youtube. Also in Israeli apparently they use pot in their hospitals to treat UC. In my opinion they are worth trying. Goodluck.

  11. Per October 10, 2013 at 8:55 pm #

    Hi Shannon

    Sorry to hear about your UC struggle, im gonna tell you the same, i tell everyone else, stop wasting time with medicin or trying some of the 500 diets, nothing will last long, its just a matter of time before UC adapts to your changes, im now 1 year post my first surgery and im so so happy i did it, it was a hard road to go down, but so worth it, you’re young, so the sooner the better, your body will heal up in no time, the same day i had my first surgery i was feeling awesome, it was nice not to have any pain anymore or any urgencies, and now 1 year later im going to the bathroom 2-3 times a day and i can eat whatever i want, its like i never had UC. feel free to contact me if you have any questions on pervork@gmail.com

    Good Luck.

Leave a Reply