Ulcerative Colitis Tips


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Please Help Me, I’m at my Wit’s End

Intro:

My name is Annie, I am now 22 and was diagnosed with colitis 7 years ago at the age of 16. The G.I’s I have seen go between calling it ulcerative colitis and Crohn’s colitis. I had very typical symptoms and flares up until 6 months ago or so. I’ve reached my wit’s end with this on-going 6 month battle, I would love some opinions, help, advice, anything!

My Colitis Story:

I spent seven years fighting the typical up-and-down U.C. battle that I’m sure you all know about. I was living life symptom-free for the most part. When it had been about 6 months or so and I would even begin to forget I had Colitis, I would get another terrible flare. As bad as it would get during the flare, it would eventually settle down with medication and what-not, and I would go back to normal. I felt as if it was under control. As in-contol as colitis can be I guess.

Six or seven months ago, I was nearing the end of my second pregnancy when I started getting yet another terrible flare-up. I figured it was simply because of the pregnancy (which also caused a flare after my first pregnancy) and decided to wait it out until after my daughter was born. About 2 months into “waiting it out,” I spent most of my days and nights kneeled over in pain, and was having terribly bloody diarrhea about 15-20 times in a 24-hr period. I was hospitalized 38 weeks into my pregnancy and had my labor induced so they could begin to treat the colitis.

Almost 7 months have gone by, and I wish I could say I was doing any better. I took prednisone for 3 months or so, the usual 60mg till I taper all the way down. This has worked in the past but this time seemed so different. Not only did the Prednisone not work at all, I now have all these other issues. I have terrible joint pain, sometime so severe it is very difficult for me to walk or hold my kids. Also, twice I have had episodes where I get incredibly painful sharp pain in my stomach which does not go away. This lasts about 3-4 days, and the only thing that makes it feel just a little better is when I finally get so nauseous that I throw up. When I go through this, I have extremely watery diarrhea and throw up at over 5 times a day… I have gotten over this for the second time, and now am just dealing with the 15-20 bloody diarrhea episodes per day that I had in the beginning.

I am starting to lose hope that I will ever get better, and honestly this just seems like something much worst, almost like maybe it isn’t U.C., or something else on top of it. Some type of food allergy? My immune system completely out of whack? Or maybe could I be getting infection after infection through my colon since it is so damaged? I would love any feedback… This is taking such a toll on me, and I can’t stand not being able to spend much quality time with my children or husband because of all this. As much as I thought my “old” colitis of over a year ago was bad, now I would do almost anything to have that back instead of this! For goodness’ sake, I am only 22 years old, and have always tried to lead as healthy a lifestyle as my situation allowed! Why?!?!?!

Thank you for anyone who took the time to read this. Even if no one has any answers or advice, It was somewhat therapeutic to do some good old-fashioned venting!

 

–Medications Details:

I have taken prednisone twice now for flares, used to take colazal in the past and now take asacol.

 


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11 Responses to Please Help Me, I’m at my Wit’s End

  1. Adam
    Adam June 4, 2011 at 9:21 am #

    Hey Annie, I’m so sorry you are not seeing any relief, but please try to remain positive, and realize that this difficult time with your UC will pass eventually.

    One thing that came to mind from my past experiences during flares was C-difficile. C-diff as its commonly known as is a bacterial infection which has symptoms very similar to UC. Also, it can be super painful in the abdomen, and its common for people to get after being in hospitals, and after taking antibiotics.

    Anyways, there was a time shortly after I was diagnosed that my UC symptoms went from bad to HORRIBLE in just a few days, and it just didn’t make any sense as I was taking a boatload of prednisone and other meds at the time. Anyways, my super smart doctor told had me take a stool sample test to check for C-diff, and sure enough I had come down with it. After treating the c-diff I was much better off and then able to just fight the UC.

    That’s the best idea I could throw your way, but I’d say its worth a shot at getting tested for if you haven’t already. And the same goes for other people with UC who are noticing a severe bump in pain and abdominal issues that “just don’t seem like the usual UC” stuff…
    all the best to you,
    adam

  2. Davina June 4, 2011 at 10:21 am #

    Hello I had a similar situation after having my kids, the pregnancy pushed me into a flare both time causing premature birth. I was able to get into remission with asacol but it was short lived. I flared again and I tried prednisone, asacol, colossal, 6mp, azathioprine, even remicade before I eventually gave up and had my colon removed. I don’t know that you are at that point yet but perhaps you could talk to your doctor about 6mp or humira, or remicade. They didn’t work for me but others have gotten relief from them. My husband is finally in remission on 6mp and humira. I also tried acupuncture, again didn’t work for me bit a lot of people with IBD swear by it. Good luck

  3. Will June 4, 2011 at 11:07 am #

    I second every word Adam just said. If you have not looked into C-diff, do that. I’m in a very familiar situation as you are, having UC for many years, and this last bout just not responding to any of my usual fixes (though they help temporarily), and also just sort of ‘feeling’ like a different monster. I just switched to a new GI since my last one said surgery was my only next step, and when I talked to this new one, he saw that I hadn’t had this test done yet lately (I was put on antibiotics 6 months ago for a few days, but didn’t know of this possible connection at the time, or until just a few days ago one I looked more online for other similar cases as mine) and since I’ve looked up information online, there are a lot of similarities that can easily be overlooked if you’re used to such symptoms. Also, anybody that has been in a hospital recently can typically come down with it, especially if their digestive system is not the strongest to begin with, as most of us UC’ers are.

    Best of luck to you, and keep us updated on all the progress!

  4. Dawn June 4, 2011 at 2:21 pm #

    Annie,

    I am so sorry you are having such a rough time. I had bad flares after both of my pregnancies, so I can relate to the difficulty of trying to care for your kids when you feel so awful. Hopefully you have great support around you to help you get through this. I think the advice you’ve been given on getting checked for C-diff is good advice. Also, make sure you are working constantly with your GI to let them know what is going on. When you see them or talk to them and they suggest something, then you make sure you say, “Well, I will call you in a week to talk about how I’m doing.” and then do that. If they don’t hear from you, they will assume you are better. Sometimes you have to be the squeaky wheel! If you really feel like they aren’t listening or helping, consider switching doctors. I struggled for the first year or so purely on account of having a horrible GI. There are still a lot of other treatment options out there to be explored, so don’t give up and don’t let your doctor forget about you.

    Good luck to you, dear! I hope you find relief soon. :-)

    Dawn

  5. SerenityNow June 4, 2011 at 3:17 pm #

    I too am sorry to hear about this flair and what you are going thru. My most recent flair was horrible and accompanied by terrible stomach pain. He tested for c-diff to rule it out but he thought it probably was just part of the fact that the flair was so bad and all-consuming. He was correct. I was reduced to eating 2 foods that were very soft because anything more also caused my stomach to wrench in pain. I was also put on high doses of prednisone which did terrible things to my body but not nearly as bad as what the UC was doing. I just had to live through it until I finished my taper down. They did get better with each step down though. Unfortunately the prednisone didn’t work and I am scheduled to start Remicade next week. I agree with everyone else who posted to be checked for c-diff and c-diff toxic. I noticed on the test sheet he uses that he marks both every time he has this check run. And he has this checked every single time. I hope you feel better very soon.

  6. Helen June 4, 2011 at 3:29 pm #

    Hi Annie sorry you are having such a hard time at the moment. I agree with everyone’s comments above look into C-Diff, also maybe look into medications such as Humira, Imuran, Remicade/infliximab, pred foam, colifoam there are a host of medications out there you could try. Maybe it is time to change your GI doctor if s/he is not trying meds other than prednisolone. There is also the SCD diet I have heard others on here have great sucess. I really hopw you find some relief soon. Please let us know how you are doing! Take care and thank you for sharing your story! x

  7. Niaz June 4, 2011 at 5:16 pm #

    Hi Annie:

    I know you are a fighter, and you will conquer your pain and agony this time for sure. Regarding medications please find a new doctor to get advice from. I had to change 3 doctors in last 3 years. I am really doing fine without changing my medication and basically getting support from my doctor on how I can manage my ulcerative colitis. What is your diet? Please start SCD. Start the day with a banana shake or smothie.
    Thanks.
    NB: I have heard similar situation from only a few pregnant women. Interestingly, one of my close friends is doing really well who is now under menopause. Hormones are definitely playing a big role.

  8. Peter NZ June 4, 2011 at 6:25 pm #

    You poor kitten,
    I haven’t been pregnant myself so can’t comment. However, my sister has and she did get the c dif887vf as refered to by other punters. Once treated for this she got better.
    Other than that I can suggest that I have had great relief since following a gluten-free diet.
    All the best,
    Peter

  9. Dan June 5, 2011 at 2:43 am #

    Sorry. Please ask your doctor about Entocort. It’s a non-systemic steriod (just works on the colon). It’s a wonder drug for me. Good luck.

  10. Annie June 5, 2011 at 3:56 pm #

    Thank you all for all your words of advice. I will definitely get checked for C-diff, and research/ask about the medication suggested. I am on my second G.I, and am even more frustrated with this one than the first… I have an apointment on the 15th with a G.I. at Mayo whom is supposed to be one of the best. I am counting down the days in hope of getting some answers! I have also been following a gluten-free diet for the last few days with no relief, but I understand this can sometimes take months for any change!

    Does anyone have any idea of treatments that might work while breastfeeding? I know that I might eventually have to give in and give this up in order to take care of myself, but I am willing to do almost anything to keep nursing (except keep going through this as bad as it has been!) Many have told me to “stop and take care of myself,” but the truth is it is my only therapy, my “relax and re-group” time… The only time where I have to do nothing else but sit, relax and bond with my baby girl (until of course I have to run to the bathroom :(. ) Maybe the Entocort that Dan mentioned since it is a non-systemic steroid? Unfortunately all my research results in the typical “ask doctor about use while nursing” etc… But I would love to get some ideas before I go see the doctor!
    Thank you all so much again, it means the world to me to finally have people to relate to… I have gotten so much support from my husband and family but I know that they don’t really understand and can’t offer much advice! I will keep you up to date if anything changes.

    Annie

  11. Victoria Ann June 6, 2011 at 1:43 pm #

    Hello Annie,

    You poor love that all sounds so so awful. A time when your supposed to be so happy is being tainted by this flare up. Iv just come out of a bad flare, im on the reducing dose of prednisolone now – I had to take 10mg more than the normal 60mg this time as they werent working. Im really concerned that your Doctor hasnt admitted you for treatment in a hospital. In my experince in the UK going to the toilet 15+ times a day and having bloody stool requires urgent treatment.

    I found this website when the flare started 9 weeks ago, its helped me so much. Im getting married and want to have try to fall pregnant from december this year. Id rather not be on the medication when I do which is why I started the SCD diet 7 weeks ago. Its totally changed my life. I believe the bad flare was a coincidence and now im on steroids the diet will continue my progress when theyve finished. I managed to pick up a vomitting & diarrhoea bug that really worsened my colitis symptoms this time so it sounds like being tested for c-diff is the first thing your Doctor should have done.

    Look into the diet, if you get the books and are prepared its relatively easy to do. Please go to the emergency department if you get any worse – you deserve to have this sorted out asap! Good luck and I really hope your helped soon.

    Victoria x

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