Ulcerative Colitis Tips


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Welcome to Ulcerative Colitis – I’m Just Diagnosed

Introduction:

My name is Bethany and I’m a 22 year old paramedic from Virginia. I have what I consider the best job in the world and up until recently I was a very active person. I love to run and work out and spend time with my fiancee.

Colitis Symptoms:

Bloody and frequent bowel movements, consistent nausea, fatigue, weakness, cramping abdominal pain

My UC Story:

So, my whole story started approx 6 weeks ago. I started having some odd abdominal cramping that progressed into pretty severe pain and then very loose diarrhea that was coming 10+ times a day. I went to my PCP thinking maybe it was food poisoning because I had just eaten at a new restaurant and they put me on Cipro and Bentyl. I started to feel a little better by the second week but nothing had truly slowed and I still felt miserable. I let it go but by the end of that second week I was so tired and worn out I couldn’t stand in the shower or function normally at home and I had started to spike fevers. I had taken a week off from work thought things would improve but to no avail.

By that Monday, my fiancee made me go back to my PCP. My abdominal pain had gotten so bad and my stomach had become distended. I couldn’t stand to be touched or rolled because everything made it worse. My primary sent me to the Emergency Room to have a stat CT scan and blood work. My blood pressure had plummeted and my heart rate was in the 140’s. After what seemed like endless hours and enough drugs to knock out a horse they decided to admit me and said I had a form of colitis but I would follow up with the GI doctors when I was upstairs.

I spend a week in the hospital and fought every problem I could. My potassium was low, my albumin was low, my blood pressure wouldn’t stay up, my fevers were all over the place. I was put on round the clock antibiotics, fluids, Bicarb, Dilaudid, Zofran, Solumedrol, potassium supplements, and whatever host of nonsense else I was on. Day 4 in the hospital they sent me for a flexible sigmoidoscopy where they officially diagnosed me with Ulcerative Colitis. I had no idea what I was dealing with or what this meant for my future. Was it permanent? Would I get better? Could I function on a normal lifestyle again? I mean, I’m a paramedic, my life is crazy. I can’t always be wondering where the closest bathroom is.

I am now a week and a half out of the hospital and still feel like garbage. Nights seem to be the worst for me (bad, because I work nights). I’m taking the meds like I’m supposed to and trying to watch my diet but from what I’ve read it’s all a game of guess and check. I’m still worn out and constantly tired and lost 10lbs in less than a month. I’m just ready to feel normal again and I can feel myself getting depressed by it.

Where I’d like to be in 1 year:

Symptom-free or mostly and less medications.

Colitis Medications:

Prednisone
Asacol
Phenergan
Percocet
Potassium Supplements

written by Bethany P

submitted in the colitis venting area




23 Responses to Welcome to Ulcerative Colitis – I’m Just Diagnosed

  1. Adam
    Adam November 4, 2012 at 11:23 am #

    Dear Bethany,

    I’m so sorry that you are in such a funk with symptoms right now. I know it is super hard to live with the symptoms, and the running to the bathroom and all the rest of hell that comes along with it, but you’re gonna get through this and get back to life again. It’s probably hard if not impossible to believe, but you for sure will.

    I bring this up with quite a few people here, and I’m wondering with you as well, have you been tested via a stool sample for C-diff yet?

    If not, you might want to consider asking your doctors for that test. Much of the literature talks about how people are more susceptible to coming down with c-diff after taking antibiotics and also when being exposed to the “hospital environments” which fit your situations it sounds like. C-diff is rare, but the symptoms are very similar to UC and its most definitely not uncommon for UC’ers to come down with c-diff after their diagnosis or at some time in the future for a number of reasons. I myself was diagnosed via stool sample with c-diff less than two months after my initial diagnosis and not until I took care of that (with antibiotics) was I able to move forward on treating the UC.

    Just an idea, but it kills me when I hear from people who have been dealing with UC and un-diagnosed c-diff for long amounts of time, and although a very small chance, I sure wouldn’t want you dealing with this same situation too without knowing it.

    Wishing you the best,
    Adam

    • Bethany November 4, 2012 at 2:04 pm #

      Hey Adam,
      Thanks for the words of encouragement. It definitely hasn’t been a great couple of weeks and I have my GI follow up in a couple days. Fingers crossed for some good news or something that will make me feel better. When I have in the hospital they did two droll samples for c-diff and both came out negative from what I was told.

      Bethany

  2. bev November 4, 2012 at 5:00 pm #

    Hi Bethany…

    Another new person found our site! You sure came to the right place! I see that you are on a crapload of meds. So sad that that’s how the doctors treat this…

    First, what Adam said is paramount. If you do have c-diff, you have to find out, and deal with it first.

    Second…I lost 13 years of my life to the med merry – go – round. You are fresh and new. I wish I could tell you…don’t do it! My doctor said I HAD to be on meds forever. What did I know? I’d never even heard of UC before I was diagnosed with it. Well, after feeling nauseated, losing my hair, having terrible cramping and pain, bleeding to death, and a myriad of other shitty symtoms (all of which, by the way, my doctor attributed to the UC…not the meds), I decided to take charge of my own health and life. Because I CAN.

    I decided to try a good probiotic (at least 50 billion strong). I had read other peoples’ posts about them and I never really believed that they would help…and my doctor sure as hell didn’t believe that they would help. Heck, I was too far gone she said…I had pancolitis. My whole colon was ulcerated! I took the probiotic and withinn days (for me), my UC symtoms started disappearing! After a month, I was feeling so strong that I dumped the asacol. (I was on the highest dose of asacol possible, which was not helping at all, in fact things seemed worse, and was being recommended steroids, remicade, and imuran. I researched those drugs and told the doctor…no way!) Anyway, after I went off the asacol…I felt normal again!

    Now, I take my probiotics (one capsule) evey day, first thing in the morning with water, and some L-glutamine powder mixed in juice…everyday. That’s it! Much to my doctor’s dislike, I seem to have cured myself. The meds are just a band aid, that seem to all eventually fail, while harming us in the process. Yep. I said it. They just hurt us. There are always reactions with any medication and some are long term. Doctors never tell us that because we wouldn’t take them if we knew. I don’t want to see you, or any other UCer go down that long horrible road. I am so sad and tired of hearing the same stories from everyone.

    I’m sorry that I am so blunt. I just want EVERYONE with UC to just try probiotics. And GIVE THEM TIME TO WORK! For me, it only took about a week, but for some, it can take a month, or maybe even longer. Also, you have to remember to take them evry day!! Never miss one. Not only all this, but probiotics cost me less than $50 a month. I used to spend up to $500 a month on the meds!!

    Take care…and welcome to this site. Like I said, you’ve hit a goldmine here. There is so much good information on here, it’s unbelievable! And, the best thing is…we are NOT DOCTORS!! We are the people who have the UC and who want to cure it and feel good, not live on drugs and feel sick every day!!

    Bev:)

    • roderick psaila March 6, 2013 at 12:14 pm #

      hi im roderick from a small island called malta,iv been with uc for 4 months and im on pentacol,predisone,megalzine enema,azatioprine.im dealing good till know but the beginning was terrible i was a bodybuilder ,i lost 30 kilos in 3 weeks with diarrhea with blood.im getting along know the bleeding stopped and no diarrhea,the only problem i got is the bad tasting im having every single day.im always on chewing gum or some kind of sweet in my mouth due of my plastic tasting in my mouth.can anyone tell me if anyone if you had any kind of taste like this?please thanks alot

  3. Lisa OH
    Lisa Kapp November 5, 2012 at 6:35 am #

    Hi Bethany. Your story is pretty similar to mine. Right after Thanksgiving last year, I started having symptoms, back & forth with primary care, referral to GI (couldn’t get in for like 2 mos so went to colorectal surgeon for a colonoscopy), diagnosis of UC mid-Dec. They put me on Asacol, which didn’t help, by early Jan, I ended up in hospital for 2 wks w/massive bloody diarrhea and all the fun that goes with that. Discharged after 1 Remecaid infusion, cuz it SEEMED to work. Two more remecaid infusions & crazy drug cocktail later, I started feeling worse, tested for Cdiff, put on vacomycin, which didn’t work. Back to hospital, put on all kinds of IV drug craziness, colon became toxic, so had it yanked before it perforated. I’m currently waiting for the 3rd of 3-stage jpouch surgeries. If I had time back then to stop my spinning head long enough to try other stuff, I would have tried the SCD or GAPS diet. The docs tell you diet has nothing to do with it, but it does. Plenty of folks on here and other IBD chat sites have had alot of luck with it. Also, probiotics @ least 50billion+. There is research showing that probiotics help alot with IBDs, so what the heck??

    I hope your flare dies down soon and you are back to your energetic self soon. Hang in there, it will get better!!!!

    Lisa

  4. Bethany November 5, 2012 at 5:38 pm #

    So bad news bears, I got readmitted today. I hit a huge slide back. I started spiking fevers and unable to eat. Went to the ER and here I am not lying in a hospital bed. All of my labs are completely out of control and I’m on a electrolyte replacement therapy right now. Gi came in right after I got up here, super nice guy and very informative. I’m hoping this atleast makes me functionable to start the new diet and give probiotics a whirl. At this point, I’m desperate. Fingers crossed!

    • Lisa OH
      Lisa Kapp November 6, 2012 at 6:54 am #

      Oh no, Bethany! I hope things get better for you soon. Make sure they do a Cdiff test cuz if that’s what’s making you sick, you need flagyl and vacomycin stat! Sending healing thoughts your way,

      Lisa

  5. bev November 5, 2012 at 6:12 pm #

    Oh, that’s not good, Bethany.

    Are we bad news bears on here? I sure hope not…I only want to be optomistic! I hope I didn’t come across as negative. I’ve just been through it all, and I don’t want anyone else to waste their time trying one drug after another, only to find out that they don’t really cure anything.

    Get yourself fixed up by the GI…I am not a specialist like he is. You can always try the probiotics once you are stabilized. Sometimes the drugs are a necessary short term evil. It’s never too late to try the probiotics after you are stronger and feel better.

    Cheers, and keep smiling!!

    Bev

    • Justin
      Justin November 5, 2012 at 7:14 pm #

      Hey bev! How have you been? Its been forever since ive been on the site, been on a roller coaster ride since the surgery. I hope all is well. And so sorry Bethany that you got dragged into the ugly world of colitis :-(

      • bev November 5, 2012 at 10:55 pm #

        Holy crap…Justin?!

        I have been wondering how you’ve been since…forever!

        Glad you’re back!!

        How the hell are ya?

        • Justin
          Justin November 5, 2012 at 11:06 pm #

          Im doin a little better, been a rough road since the surgery. Got two more surgeries coming up, one in January and one in March. I might have to have surgery on my kidney as well it got damaged during the last surgery. I can’t wait until everything is over with and im all healed up lol. How the heck are you doing? Good i hope! Im glad to hear from ya im sorry it took so long

          • bev November 6, 2012 at 7:27 am #

            No worries Justin…i’m just glad that you’re back! I was really worried that something had gone awry…obviously it did a bit…your poor kidney. Geez…like you need another problem, right!

            I am still doing the same! I know…lucky. Every day I keep my fingers crossed that the UC won’t return…or that I never get toxic, like what happened to you.

            Man, Justin, you’ve been throught it! And, here you are!! On the other side. Thank goodness. You can help alot of people on this site with all of your experience, that’s for sure.

            I just can’t say it enough…welcome back!!

            Bev xoxo

          • Barb November 8, 2012 at 8:46 am #

            Wow, Justin you really have been on a rough road. How long have you had UC? I will keep you in my prayers and hope that the next 2 surgery’s go smoothly.

            How are you making out with eating? Are you able to eat what you want?

    • Barb November 7, 2012 at 11:31 am #

      Hey Bev,

      What is the name of the probiotics that you use?

      • bev November 7, 2012 at 12:41 pm #

        Hey Barb!

        For the zillionth time (lol), they are called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE…

        I’m sure you are all so tired of hearing that!!

        However, if you cannot get that exact probiotic, any good 50 billion + one should do just as well, I would think.

        Cheers,
        Bev

        • Barb November 8, 2012 at 8:43 am #

          Thanks Bev I am going to look into them. I am down to the 5mg of prednisone and will be totally off in 2 weeks. This time I am going to try diet and the probiotics to stay in remission….keeping my fingers crossed this works.

          Thanks again.

          • bev November 8, 2012 at 9:13 am #

            I’m crossing my fingers for you too, Barb! I want so badly for probiotics to work for everyone. Everyone!

            What a great way to ‘treat’ a disease…it is like a ‘treat’ fior the body after all, probiotics. They can’t hurt us!! Like thos darned meds…

            Cheers:)

      • Justin
        Justin November 8, 2012 at 9:03 am #

        Hey Barb! Yeah its been rough it seems like everything that could go wrong is going wrong lol. But now everything is going pretty good. I’ve only had ic since may of this year. I only had it for 2 months before it turned into toxic megacolon. But now i can eat just about anything i want. Just no nuts or popcorn because they block the stoma. And i cant tame extended release medicine or fhey end up in the bag lol. Im eating like a mad man now. I was on a appetite stimulant to help me gain weight.

        • Barb November 9, 2012 at 10:55 am #

          That is good to hear.That is my biggest worry. I love food and love a social life but having this disease is not fun and interfering with both of those…..lol

          I am hoping once I get off the steroids that I will be able to still eat good things. I know I will have to avoid certain things but hopefully can eat some of them hear and there. My doctor tells me that surgery will be the last resort so keeping my fingers crossed that the ascal and diet work. Take care.

  6. Bethany November 7, 2012 at 9:08 am #

    So update, I have now been in the hospital since Monday. And feeling mildly better I guess. A little stronger maybe. I’m on complete electrolyte replacement because my system was so off. My gi has been great. He’s staying optimistic and says he would like to keep remicaide as a last attempt. He is concerned though because my white count/band count isn’t really improving. I aloso met with the surgeon purely as precautionary. My gi wants him on the same page just in case things change quickly. Surgery is possible but we are trying to stay away from that. I also met with a dietician yesterday. She wants to keep me on a low residue diet for now. I did mention to her the scd diet which she said she wasn’t familiar with but said she would look into and get back to me.

    So here is where the bad news starts, this morning when I met with my gi he was a little less optimistic because now my blood cultures came back positive this morning. So I started vancomycin with my morning meds. C-diff is still negative though. Thank goodness. The big concern though is that my doctor is considering sending me to a bigger hospital in Richmond and go from there. Kinda scaring me a little and feeling a little lonely. My fiancee has been great but still.

    Anyways that’s my update, thanks!
    Bethany

    • Barb November 7, 2012 at 11:38 am #

      Awl Bethany, I know how you feel I was there 14 years ago. Hang in there and don’t let this get you down. I too was on the residue diet stick with that and cut out the gluten for now. You will start to feel the difference. Are you on prednisone?

    • Jill
      Jill November 9, 2012 at 7:02 am #

      I am so sorry you are going through this.. I am in the healthcare profession also and have a bad taste in my mouth as to the knowledge or lack of when it comes to IBD ( UC for 10 yrs and dx crohns 10/12). So glad you have the support of your fiancee. My husband is a rock! Hope you are better today. This website will help out tremendouly. We are not doctors or specialist but do believe we are our own best health advocates. A word of encouragement in getting some tools in the discovery of your new self is the book Guts and Psychology Syndrome ( GAPS) by Dr. Natasha Campbell-McBride MD. I started out with the book Breaking the Vicious Cylce the turned me on to SCD. Wonderful wealth of information but still wanted to know more detail that GAPS book goes into. SCD lifestyle is another website that helps in breaking the diet down into steps as there is so much information! Let me also say it fly’s in the face of what we have been taught. Wish you the best in calming this flare and looking forward to hearing how you are doing!

      JIll

  7. Justin
    Justin November 7, 2012 at 10:05 am #

    Bethany im sorry :-( that is such a bummer. What did your blood cultures come back positive for? You must be bored out of your mind in there. Do you have to wait until you’re infection free to start the remicade? When i was in the hospital i was waiting for my tb test results to come in so I could start remicade. I was waiting for weeks it sucked. It took them too long i ended up having to bave emergency surgery before i ever got to try the remicade. I hope you start feeling better soon. I know it sucks in the hospital just keep your head up and stay strong. Keep us updated! :-)

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