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.

Please Don’t Let There be a Line at the Ladies Room!

Shelly V fI was diagnosed approx. 8 years ago with Ulcerative Colitis. I started out as only having proctitis and without the much needed help and listening ear of a caring Gastro Doctor my disease spread to my sigmoid and descending colon within a year. I was in bad shape to put it mildly…

It’s been a tough 8 years with lots of doctors’ visits, hospital stays, meds, new meds, & NEW GI doctor’s visits. All this and up until this year I WAS in denial that this was really happening to me…

Some more about Shelly:

I am a happy mom & wife enjoying life to its fullest that is until 8 years ago when my life took a hard turn. I work full time in risk management and during my free time… (Not often enough) I am an artist/crafter and loved the time I spent traveling the craft circuit and selling my creations. All this changed when some strange symptoms started to occur…

Symptoms:

Abdominal Cramps
Diarrhea w/heavy bleeding
15 or more trips to the restroom daily
Extreme fatigue & weakness
Malaise

The Ladies Room (Please Don’t Let there Be A Line)

I was under some stress with my job when I started to have my first UC symptoms. It started with frequent trips to the bathroom and really bad stomach pain just about every day out of the week. I kept thinking the stress was upsetting my stomach really bad. The bleeding started shortly after these first symptoms started and it scared me really bad, so much so that I did not seek treatment for several more months as I feared what I might be told… Not smart on my part!

I finally decided to seek treatment and went for my first colonoscopy which at the time showed I had a very mild disease of the rectum and NO BIG DEAL per the GI doctor. So… I did the treatment as prescribed Canasa suppository every night (for those that aren’t familiar, this is a rectally inserted medication = GOOD TIMES!!). Little did I know that schedule of treatment was basically going to be for the rest of my life. I was never told this was an auto immune disease and that the disease might spread and would not go away unless you stayed on a treatment plan or by chance went into remission.

Within the year my symptoms were progressing and the Canasa treatment was not even touching the issue at hand. I was having as much as 20 trips a day to the restroom, w/severe rectal bleeding, and extreme exhaustion. I returned to my GI doctor only to be told sorry… when I did your colonoscopy it was only mild disease this is just part of the processes and that I should be thankful it was only in my rectum and easy to treat!

I had no idea what to do. I hated leaving the house the symptoms were so bad. It was taking its toll on me and my family. Missed outings and vacations… due to the fact I could get far without having to stop at a restroom and always packing a second outfit just in case I didn’t make. So depressing…

Finally the symptoms got so bad I decided to seek treatment with a new gastro doctor that was recommended to me through a co-worker. My new GI doctor ran me through the medication gamut with little ease of my symptoms for two years. The Doctor refused to try a run of steroids just like my first GI Doctor and my symptoms finally landed me in a 6 day Hospital stay. The hospital started me on steroids, OH WHAT A GLORIOUS DAY! Finally relief!!

I went into remission for 10 months!! YAY!! Fast forward ahead five years, I continued to struggle with on & off symptoms while trying different medications. (Canasa, Lialda, Asacol, ProctoFoam HC, & Rowasa). I finally seemed to be doing okay with Rowasa enemas nightly with only mild symptoms. Again not a conventional treatment to administer, but hey you do what you got to do.

All seemed to be going okay until December 2015 when I suddenly came down with a bad bout of pancreatitis! Oh god was it bad!! I spent my Christmas in the hospital. I went through test after test trying to find out why this occurred and finally I was told NO MORE Mesalamine medications as they thought I was experiencing an intolerance to the medication.

I was left hanging without maintenance medication. My GI Doctor basically told me that Uceris or Prednisone was all I had left to take. What!!! That was so far from the truth, so I decided it was time to seek treatment with a new GI Doctor.

I have suffered for almost eight years with (2) GI Doctors not keeping a close eye on my progress, it’s a horrible place to be. Lack of GI doctors that accepted my insurance in my area, I had run out of options locally.

I found a new doctor that is a good distance from where I live, but I heard good things about the group and was hoping it would be worth my drive. I met with this new doctor and he was kind enough to hear my story. He immediately ordered at CAT scan and colonoscopy although I was already on my third week of Uceris from the other GI Doc and my symptoms were resolving.

My colonoscopy only showed mirco-disease, no surprise as I had been treating with steroids. He gave me the option of Imuran or Remicade, but told me if I wanted I could try an extended release mesalamine. After he had explained all the side effects of the biologic route I was ready to try mesalamine one more time. FINGERS CROSSED it would work with no adverse reaction.

I started Apriso as prescribed. I was on my last week of a 42 day cycle of Uceris when I started the Apriso. I completed my full prescribed regimen of Uceris and was completely UC symptom free and feeling good.

One week off of Uceris and first week on Apriso my UC symptoms were back. Heavy Bleeding, diarrhea, abdominal cramps, frequent trips to the bathroom and general feeling of not well. I called my new GI doctor and was given another script of Uceris and told to stay on the Apriso.

This time the Uceris was not stopping the symptoms so I decided to discontinued the Apriso on my own because the UC symptoms were getting worse everyday. Since I discontinued the Apriso my symptoms have resolved.

It looks like biologics are in my future as I seem to not be able to tolerate the mesalamine medication any longer. I can’t help, but be concerned… Have I found the right Doctor, do they really understand this disease & how hard it is to endure a flare, will I ever get back to normal?

Medications

Canasa – Mild relief until the disease progressed
Lialda – No relief & horrible abdominal pain
Asacol – No relief & horrible abdominal pain
ProctoFoam HC – Mild relief until the disease progressed
Prednisone – WORKED LIKE A CHARM!! just gained 18 pounds while taking it…
Rowasa – Mild relief until Pancreatitis
Uceris – Total relief, until I started Apriso
Apriso – The worst I have ever felt, total UC symptoms returned and Flu like symptoms as well.

written by Shelly V

submitted in the colitis venting area




18 Responses to Please Don’t Let There be a Line at the Ladies Room!

  1. Lisa Baker July 19, 2016 at 12:26 am #

    Hi Shelly. I can’t tolerate any mesalamine drugs so I’ve been on a immunosuppressant almost from the get go. (Dx May 2015). It keeps me in remission but I’m tired and worn out from the medication. I currently follow the SPECIFIC CARBOHYDRATE DIET in the hope that one day, I can come off medication. Do some research on the diet. Read Breaking the Vicious Cycle. It may be just what gets you in a healthier place.

    All the best!

    Lisa

    • Shelly Vernon August 1, 2016 at 9:47 am #

      Thank you for the feedback. I will look up that book! I started remicade on 7/25/2016 and I am currently taking steroids to help stop the serious flare I am having. Been a rough few weeks, but I am hopeful that the remicade will help bring me into remission then maybe I can figure out a new way to eat and control my flares. Such a miserable illness at times… No doctor has ever gone over diet with me in the 8 years I have been dealing with this. I have read about the GAPS diet, but I think I will need to really prepare for such a way of eating.

  2. Rachael July 19, 2016 at 6:26 am #

    Steroids great short but not long term. I’m a 6-year colitis patient, had 2 weeks in hospital 2 yrs ago. Now managed by Infliximab (Remicade), mezavant And suppositories when needed. I’ve figured out wheat no good for me. Exercise and stress management helps. Good luck X

    • Shelly Vernon August 1, 2016 at 9:49 am #

      Thank you so much for your feedback! I have been so sick over the past 4 weeks dealing with this flare, possibly the worst I’ve ever had… I started remicade on 07/25/2016 and currently on a steroid tamper. Hopeful that brighter days are ahead…

  3. Nikki July 19, 2016 at 4:22 pm #

    Have you tried a functional medicine doctor. Please find one in your area. Diet and nutrition really can help.

    • Madeleine July 19, 2016 at 5:46 pm #

      TOTALLY and emphatically agree that a functional medicine doctor is the way to go. Also, read Jini Patel’s Listen to your Gut.

      • Shelly Vernon August 1, 2016 at 10:03 am #

        thank you… and I appreciate your feedback

    • Shelly Vernon August 1, 2016 at 9:51 am #

      No… I don’t think I have ever heard of that type of doctor. I will def. see if I can find one in my area. Thank you so much for your feedback!!

  4. Candi July 19, 2016 at 5:00 pm #

    Shelly just read your story and wow was that me. I finally had an ostomy, I know that is not what anyone wants to hear especially me. BUT now I have a life back. Yes I had some adjusting and recovery to do and actually I guess you could say I am still doing it. I am only 8months in but am doing almost everything I used to before I had to call the bathroom my home due to the UC. Now I don’t have to worry about the line at the ladies room. Everyone does what they have to do and I wish you so much good luck.

    • Shelly Vernon August 1, 2016 at 10:23 am #

      Had you tried any immunosuppressant’s prior to your ostomy? What lead up to you decide to have the ostomy? I am glad to hear you are regaining your life back (HOPE!!)

      I started remicade on 07/25/2016 and currently I am on a steroid tamper. Symptoms have started to ease and I am hopeful for better days. I am a little nervous about coming off the steroid as I fear the symptoms will return as they did so quickly the past month when I stopped them previously.

      I pray that you will continue to gain strength and freedom and that any subsequent surgeries are followed by a speedy recover. Thank you so much for your feedback!!

  5. Maxie M
    Roses N Indigo Austin July 19, 2016 at 5:32 pm #

    I started with proctitis also and was never told of the dangers of it progressing. I now have gone from Proctitis to Ulcerative Colitis and now Crohns! There is many more medications you can take?? Firstly you NEED to go on steroids to get this under control and then press them about trying Immunosuppresants — Aziathiaprine is very good and that is just one. You poor thing, i am actually gobsmacked at the low level of treatment you have been receiving. We really need to educate ourselves. I was in denial about diet but it means a lot. I am on an all plant based diet now and it is working wonders. Good luck xxxx

    • Shelly Vernon August 1, 2016 at 10:30 am #

      Its been a long road of terrible doctors! I am currently on a steroid taper and started my first remicade infusion on 07/25/2016, second loading dose a week from today. So far I am a little crazy on the steroids, but my UC symptoms are starting to ease. As you know the steroids are always our necessary evil! I am very hopeful for better days very soon!! Can you tell what resources you used to start on the plant based diet? Any books you would recommend? Thank you so much for your feedback

  6. Phil S. July 20, 2016 at 10:13 pm #

    Serious U.C. Since Dec. 2009. All your symptoms & many different meds. Only temporary relief.

    Started Remicade in June 2012 — total remission so far since then.

    • Shelly Vernon August 1, 2016 at 10:43 am #

      I started remicade on 7/25/2016 and have my next loading dose a week from today. I am really hopeful for better days. I am so glad to hear you are in remission

  7. Cathy July 21, 2016 at 9:57 am #

    I agree try the SCD diet Elaine Gottschall’s Book Breaking The Vicious Cycle. It worked for me. You make mistakes at first and you have worrisome days but stick to it and try not to make mistakes as it will come back. You need to read it over and over again to get everything correct. It will change your life eventually.
    God Speed.

    • Shelly Vernon August 1, 2016 at 10:47 am #

      I will look this up! Thank you. I appreciate your feedback

  8. Janine July 29, 2016 at 2:07 pm #

    Omg I could not imagine going through what you have.. Just got out of the hospital 4 days ago…
    I have not seen a GI dr yet..
    I’m on antibiotics and every time I eat it goes right through me.. When does the diarrhea stop? The bleeding and the cramps stopped but I cant leave the house.. I need to go back to work..
    Does Imodium help?
    What do I do ? I’m new to this and horrified

    • Shelly Vernon August 1, 2016 at 10:53 am #

      Have they checked you for cdiff? I don’t recommend using Imodium until they have confirmed exactly what is going on. How are you doing now?? I apologize for my delayed response I have been so sick the past four weeks.

      I hope you are doing better. Please let me know how things are going and if you have been to see a GI doctor yet.

Leave a Reply