Feeling Helpless and Frustrated…Please Help

Introduction:

32 yr old female diagnosed with ulcerative colitis about 5 yrs ago. Did great on Asacol and Prednisone taper until now…in my spare time I enjoy reading and any activity with 6 yr old daughter..
Ulcerative Colitis Symptoms:
I am currently in the middle of a terrible flair ( bloody diarrhea, left sided abdominal pain,nausea,back pain,leg pain,hip pain) and extremely frustrated by it.. I was just hospitalized for 5 days bc the prednisone was no longer working .my dr. Decided that I should go in for iv while the imuran he prescribed took time to kick in.. The imuran has made me terribly weak and nausea and I feel completely helpless.. I am tired of relying on pain medications to get through the day.. I’m petrified of surgery as I am only 32 and my dad has had it..

Ulcerative Colitis has taken a toll on the quality of my life..

I feel like I revolve my life around a bathroom and how I feel day to day..I am constantly weak and tired as well. I can’t take this much longer.. My questions are..Did anyone have success on imuran and or remicade? Is this going to be just a temporary fix? I feel as though my doctor doesn’t have enough time in the day to deal with me and that I am bothering him every time I call his office with questions.. He also doesn’t have a nurse so he works directly with all of his patients. I believe these are the next steps for me? My doctor also mentioned humira.  Also anyone have success on humira?
At what point does the doctor suggest surgery?  My doctor hasn’t even brought it up yet but I think he is nervous to discuss this with me..as I will break down in tears.. I am also a 32 yr old single mom.. I am working on adjusting my diet..ie no caffeine, no raw vegetables, fruits, trying to eat bland diet but my weight is still dropping..I have absolutely no appetite due to the abdominal cramping and nausea. Anyone has success with just changing their diet.. I previously ate a ton of salads and spicy foods at night..also enjoyed a glass of wine at night to unwind from work. I weighed 102 to begin with and am now down to 94 pounds.. Anyone have success with the surgery? Anyone have a j pouch? How often would I have to go back for repeat colonoscopies? My family has been extremely supportive during this time so I am very lucky..also have a great fella in my life that is trying his best to understand what I am going through..my main concern is losing my job over this and having to have surgery in the end after all of this torture with medications..I would really appreciate any feedback. And suggestions..
Colitis Medications:
Currently on imuran..just increased dose to 100mg..pred 40 mgs, asacol 1200mgs , enema in pm, calcium and vitamin d
written by Judy
submitted in the Colitis Venting Area



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10 Responses to Feeling Helpless and Frustrated…Please Help

  1. Catherine March 15, 2012 at 6:54 am #

    My 19 year old daughter had her first of 2 surgeries 6 weeks ago. She had been in a 10 month long flare, and nothing was helping. She was on 6MP, Prednisone, Colazal, Remicade infusions,Zofran, and enemas. She feels so good, now. She even feels better than when she was in remission. She went from thinking her life was basically over, at 19 years old, to being excited about everything!
    As a mother, I’m so happy and grateful to not have to see my child suffer so terribly anymore. Also, I am thrilled to have her off all those medications that scared the hell out of me. She is weaning off Prednisone (which has done a number on her body) and then NOTHING!

    • Judy March 15, 2012 at 3:28 pm #

      Hi Catherine,

      I have a few questions for you if you don’t mind..does your daughter have the colostomy bag or j pouch? How come she is having a second surgery? My dad has uc and he has the bag.. How long was her recovery from surgery? I am sooo nervous right now..but I can’t live like this anymore.. 10 months? Wow poor kid..the remicade didn’t help? I am scheduled for my first infusion on Monday..soo scared of all the side effects as well from all these meds..

      Thank you and take care,
      Judy

      • Catherine March 15, 2012 at 5:06 pm #

        Hi Judy
        She had the colectomy, and will have the jpouch surgery in May. Her surgeon wants her completey off the prednisone before the next surgery. It took her about 2 weeks to get used to the ileostomy bag. No big deal now. She even said if something went wrong with the jpouch she’d be okay with the bag the rest of her life. That’s how much better she feels without her colon. She named her stoma…. ‘he’ makes cute noises, he sings, he dances. Haha. We joke we will miss him after her jpouch surgery. Recovery wasn’t bad. She only took the pain pills for 3 days once she was home from the hospital. Mostly just wiped out, as opposed to being in pain. She had 3 or 4 Remicade infusions, and they didn’t help her, nor the 6MP. Only prednisone helped, and she was developing permanent side effects. She was actually excited to have the surgery. She couldn’t take anymore. I hope the Remicade works for you. It does for many of people. My daughter really didn’t have a choice with the surgery. She was at the end of the road with medications. It was definitely the best thing for her. She has her life back!!

  2. jamie March 15, 2012 at 7:40 am #

    Hi, I am the same age, and weight, and your story sounds so similar. I have not had to have surgery, but am terrified of it, especially since we aren’t having the best luck with prednisone. I have an appointment coming up to see where we go from here. I became so ill last fall, I was down to 80 lbs, I left my husband and job to move myself and children in with my mother to have her help. It was so hard leaving everything behind, but it was the right decision. I am now able to focus on my health, and children. I miss my independence terribly. I try to surround myself with positivity, and have just started meeting with a counselor for my kids as well, so we learn coping skills. You have to focus on your health and staying positive, I know first hand how depressing it all can be. Maybe you could try a counselor, church, or support group. You can connect for support with me on facebook, Jamie Stewart Roman. Wish you the best, and hope your flair eases soon ;)

  3. James
    James March 15, 2012 at 8:14 am #

    Hey there Judy,

    I am currenty on Imuran and so far, it seems to be helping me a bit. I wish I could tell you that it was the cure that I have been looking for, but I believe it is helping me to deal with this disease. I have been on Imuran for about three years now. Three pills a day….every day…plus others.

    I know the mental stress that you are going through. I really believe just about everyone that has this disease goes through (and is still going through) the bad mental state that comes with this thing. I too am fighting a lot of mental anguish because of my condition and how it is affecting others.

    I am hoping that by speaking out on this forum that it will help me in my current mental state. I suggest you do the same and hope it will help in any way that it can.

  4. Isabel
    Isabel March 15, 2012 at 9:06 am #

    Hi Judy!!

    Thanks for sharing your story! I am scheduled to have surgery this Monday the 19th. I decided to go forward with it because I am tired of feeling sick all the time. As we all know none of the medications are a permanent fix. They are just a temporary bandaid with horrible side effects. Try to focus on yourself forst like someone posted above. Remember that uour daughter needs you. That’s how I got the determination to go forward with surgery. My son needs his mommy and no one else is going to take care of him like I do. You are welcome to read my story. And or contact me for support or questions!! All my best to you!!

    Isabel @ trejoisa@aol.com

  5. Trina
    Trina March 15, 2012 at 3:08 pm #

    My story is similar to yours. It sounds like you need to get a new doctor. I went through the same thing with my old doctor. You really have to have a good connection with your dr so they can prescribe the right meds. I’m currently on 6mp. I’m on month 3 of it. And I haven’t felt this well in a very long time! Now who knows how long this will last. But you have to live for those happy moments. Even if they are far and between. Stress is a huge trigger with our disease. It does bad things to our bodies. Im learning how to let go of the little things that I can’t control. And it has seem to help. Good luck with your flare up. And try and stay positive.

  6. Rick March 17, 2012 at 9:46 am #

    I’ve been thru very similar situation.I’ve been on Imuran over 12 years now.On and off Prednisone forever it seems like. Currently I’m also on Apriso – 1.5 grms. daily and at bed time I’ve been taking Canasa Suppositories and I’m doing better. It’s worth checking into. Since being on the Apriso and Canasa this is the best my U.C. has been controlled in years. Best of luck to you.

  7. Paul March 22, 2012 at 7:54 pm #

    I was diagnosed with uc in 2004. Dr prescribed various drugs and enemas but I ended up in hospital for a week to be put on IV steroids. Dr ended up putting me on Imuran (Azasan) 150 MG a day and prednisone. Tapered off prednisone after couple of months. Reduced Azasan to 75 Mg. After uc was under control i ended up getting shingles in my left eye. Probably from the steroids and reduced immune system. That was back in 2004. I run my own business and back in 2004 was working in my house so I was able to continue working even though I was confined to house for a few months. Was in remission until Feb 2011. Went on antibiotics for a sinus infection and then Uc flared up again. Dr put me back on prednisone temporarily until uc was under control and then tapered off again. Been in remission again since about March or April 2011. In 2011 my office was outside the home but I worked from home for a few months. I feel very fortunate that I have a job where I can still do my work from home. With uc it has been a blessing. I don’t like the idea of being on immune suppressives and being tired all the time. But it seems like its working for me. I know someone else who has uc and they have had numerous flareups over the last 7-8 years. I know each person’s uc is different but right now this is working for me. My doctor recommended VSL#3 (probiotic) if I ever go on antibiotics again. Anyone have experience with VSL#3?

    • Adam
      Adam March 22, 2012 at 8:34 pm #

      Hey Paul,

      Sounds like you’ve had some awesome success with medications for long periods of time! that’s excellent. Hey, you should give a read to the probiotics survey that we conducted a few weeks ago. There were 129 responses from other UC’ers and you’ll definitely see alot of talk in the replies about VSL#3. here’s the link so you can read it through:

      https://www.ihaveuc.com/129-person-ulcerative-colitis-and-probiotics-survey-results/

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