Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Caught Up in the Confusing World of Ulcerative Colitis

Introduction:

I am a mother of two great girls 10 and 5 years old. I have recently been diagnosed with Ulcerative Colitis. August 2012. So confused by all of this…. Wish so badly there was a miracle cure and my girls did not have to watch me suffer. I push through every day with a positive attitude and a smile when in all reality I am scared to death inside. Have a wonderful man and an amazing support system. My family has been incredible. I just want to get into remission and move on from this already :)

Colitis Symptoms:

I started with severe abdominal pain and for years thought it was completely normal to have to run the bathroom shortly after a meal. Found blood in my stool late July early August . Had my first colonoscopy in August only to learn that my entire colon is inflamed and in horrible shape. I have had major hair loss. I only have about 25% of my volume left…. Hair is still falling out fast am afraid I will beĀ  bald in a few months. I am tired all of the time and have been losing weight like crazy. I think I have gotten a handle on the weight loss as I am eating as often as my body will allow. I am still having 3-8 loose watery movements a day. My Dr started me on Lialda 2 pills daily, two weeks ago I started Prednisone 40mg. It is not working , the lialda is coming out in chunks most of the time and I feel good due to the Prednisone a few hours out of the day. SO when feeling good I tend to over do it and pay later with fatigue to follow that night as well as horrible cramping , loose bloody watery stools and sadness. I feel like I should be improving. I feel as if the prednisone gives me a false sense of feeling better a few hours a day when my energy level is through the roof. I see my Dr tomorrow and have to tell him the Pred is not working, Am worried about what the next step may be for me. 10/10/2012 Dr appointment will hopefully leave me feeling better rather then stuck in this horrible cycle of a terrible UC flare that just seems to be stubborn.

Colitis Story:

I just would like any info on if anyone has had a similar experience with the Prednisone not working . It has been two weeks and the Dr said he was almost certain I would find relief within a few days of starting the meds. I feel lost , like a few days turns into a few weeks and will turn into a few months. I am just worried about what may be next for me. The Dr said he did not want me on the Pred for longer then 6 weeks. That in 6 weeks he wanted me weened off.

Any advice would be amazing….

I am so happy I found this site.

Ulcerative colitis truly is a lonely disease.

Alone on the throne that is.

It is hard for people to understand what someone with UC is going through. I am very lucky that I have such a loving support team . LOL I thouhgt for a minute that when I said I was feeling ok that they believed me. It took my 5 year old asking and me responding with ” Mommy is feeling good” to her response that made me realize I was fooling no one. Her response was ” Then why do you look so icky” I have definitely had to realize they are here for me and its ok to admit I am not doing so well on the days that are really rough. Just have always hated needing anything from anyone and this I have found is truly a disease in which you are quickly humbled. I have found that if I need help I am going to ask and that it does not make me weak. Just would really like remission…. Thanks in advance for any and all advice you all may have… .

Where I’d like to be in 1 year:

Healthy!! Active like I was months ago and playing in the sand with my beautiful family or swimming in our pool!! Enjoying the life again that we have created :)

Colitis Medications:

Lialda 1.2 mg x2
Prednisone 40mg
Fish oil

I also Have IC ( Bladder Disease)
Elmiron
Sanctura
Amitriptiline

written by Tamby

submitted in the colitis venting area




attitude, hair loss, mother, positive

8 Responses to Caught Up in the Confusing World of Ulcerative Colitis

  1. Lisa OH
    Lisa October 12, 2012 at 3:12 pm #

    Hi Tamby. I am so sorry you feel yucky. I know exactly what you are going through, and my kids also knew when I was lying about feeling ok.

    Prednisone worked only to calm things down a little when I was maxed out on IV steroids. Actually, none of the drugs worked, or they worked for a couple of days, then back to 20 bloody stools/day. I had 3 Remecaid infusions, which did very little, then I got C diff and my colon became toxic, so I had to go the surgery route (whole story here http://lisakapp.blogspot.com). I am currently btw surgeries 2 & 3 of 3 jpouch surgeries and so far, so good.

    Alot of people on here have had success with the SCD and GAPS diet along with probiotics. If I had enough time to seriously try them before my colon exploded, I definitely would have. I was diagnosed in Dec. 2011, and had the colectomy Feb 15 of this year.

    I also lost a bunch of hair – it came out in fistfulls every time I washed my hair. When I got off all the drugs and gained weight, it started growing back. I have a million little inch-long strands sticking up between the ones that didn’t fall out. It’s kind of funny.

    I hope you start to feel better soon, and this nasty flare goes away. Sending healing thoughts your way,

    Lisa

  2. Joe October 13, 2012 at 12:04 am #

    Hi Tamby,

    I too did not respond to Prednizone…at all! I was diagnose with UC November 2011, after a month of bloody diarrhea, by colonoscopy. At the time the GI specialist told me I had mild to moderate left-side colitis and I was started on Asacol. By May 2012 I was admitted into hospital with a severe flare-up, losing much blood and weight. After I.V. Prednisone and Cyclosporin did nothing to slow down blood lose, the doctors were talking about surgery to remove my colon…No way! I managed to convince them to discharge me from hospital after two weeks, as I knew there had to be another way. Because I was on such high dose Prednizone it took me about four months to taper off that horrid drug. They also had me on Azathioprine and 6MP, which did nothing to help, and basically caused me pancreatic pain so intense that I had no choice but to stop taking those useless drugs as well. The GI doctors have no time for me now, as I haven’t agreed to their drug therapy or the draconian “cure” of having my colon removed. Don’t get me wrong as this option is sometimes the only thing that will save someones’ life in a severe flare-up due to megacolon or peritonitis. After a very scary time of thinking I’d made a huge mistake because of continued blood and weight lose (I couldn’t even stand up on my on)…things improved once I started the SCD diet (with high-strength fish oil). It seems to be working for me, as now I’m back to normal weight, 2 to 3 BMs a day and no blood! My GP can’t beleive I’m back to normal health with no inflammation. It’s tough to go against the specialist (and I’m not advocating that) but when the drugs don’ work you are forced to look for alternatives, sometimes there’s no choice. Thankfully you have a supporting family and that is so important. Good luck and all the best for recovery.

  3. Bev October 13, 2012 at 7:42 am #

    Hi Tamby,

    Flares are the most awful time in a UCer’s life. It feels hopeless, and as if it will never end. I hate to say ‘welcome’ to UC…it’s not very welcoming. You’re right, it is a very LONELY disease. That was the perfect way to put it…lol. I am so sorry that you have become one of the UC family. It’s always said, you can pick your friends, but you can’t pick your family…again, lol.

    I sure hear you on the hair loss thing. My hair was always the only thing I though I had going for me. Then, I got UC. I swear I’ve lost half of it! I still tease, spray, and blow dry the crap out of it to try and make it look the same as it used to. I’m ridiculous about it!

    I am not advocating stopping the meds…but I had to. They were making me even sicker than the UC was. So many bad side effects, but I stayed on the asacol (lialda) for 13 years anyway, because the doc said I had to. I decided to try a good probiotic, and after a month, I was feeling so much better (no more pain or urgency), that I just went for it…I stopped the meds. I was scared, but I thought, what the heck, I can always go back on them. Well, that was 8 months ago, and I’ve never looked back. I don’t know why probiotics worked for me, but they did. There was still a bit of blood, so I went back to the vitamin store and asked what I might take to stop the bleeding. They recommended L-glutamine, and I kid you not, two days later, no more blood! Now I take the probiotics and the L-glutamine every day. My doc is not happy with me, but on the other hand, cannot deny what is happening. I think that if I ever have a flare and HAVE to try meds again, I might just opt out and go for the surgery. I just cannot handle the meds!

    I think the reason my hair fell out was because of the meds, not the UC. It isn’t falling out any more…finally!

    I hate to say that old cliche ‘hang in there’, so I won’t. This is one heck of a tough road, this UC thing. It is the most horrible disease at times. At this moment, I have somehow Forest Gumped into complete remission. I cannot believe it. My doctor cannot believe it. I do not want to go back…ever. Flares always get better, things always settle back down, it just seems like forever. Somehow, the probiotics and the L-glutamine are working for me. They cost about $50 per month. A far cry from the almost $500 I was spending on those horrible meds.

    All the best, and I so sympathize. I’ve been right where you are.

    Cheers:)

  4. gillian jule October 14, 2012 at 3:24 pm #

    hey, i did a 7 month stint on the evil prednisone…helped nothing at all! gave me all the super fun side effects. I actually just had surgery this past tuesday and had my colon removed. hopefully you will find something that works and gets things under control for you. I have been in a major constant flare the last almost 2 years so i was out of options and honestly right now i feel amazing. i posted my story, in a nut shell under “up the creek without a colon” so if you wanna check it out, feel free. I’ve also got a daughter, 19 months old so i know how hard it is being sick and trying to care for a kid….not a fun spot to be in. but you aren’t alone and if you ever wanna talk, you can always message me. hope you start feeling better, but just remember, you will get thru it and everyone here is very supportive so lean on people when you need to!

  5. Tamby October 15, 2012 at 9:46 am #

    Thank you , Thank you , Thank you for all of the great comments and positive thoughts. Finding this site has been a blessing. I am on my way to check out each of your stories. I feel so happy knowing that you all understand. My Doc upped my Pred to 60 mg and so far I am just having a few hours of relief a day ,with the steroid rush that is. Thankfully I have not turned into the devil with mood swings, oddly euphoric and in love with the world. All but my UC that is. My entire colon is affected and my Doc told me that if the Pred doesn’t kick in by next week he has to refere me to another Doc. I was sort of afraid to ask what type of Doc , I think he did not want to add any stress to my already spinning mind….. How kind of him, ha ha.. Am curious to see whatthe next step is for me, Am going to get some probitics for sure, just met with my Urologist and she suggested the same thing. I have had the feeling lately that I would just rather them take my colon now rather then suffer for any longer have currently been in a flare since before my .
    Am looking forward to reading the stories about your surgeries ladies to see how well you are doing now ;) You have all given me such valuable hope.. WIll be in touch

    • Tamby October 15, 2012 at 9:47 am #

      Would love to talk to you about your journey and how you are doing now. I definitely do not look forward to suffering any longer and am exploring every option to get my life back on track. Best wishes and happy thoughts hope you are recovering nicely.
      Tamby

  6. Kathy October 19, 2012 at 9:14 am #

    Hi:

    I am 45 years old and found out the first part of May 2012 that I have UC – mild to moderate. I told the GI Doc that I didn’t want any steroids since I watched my brother go through it. He is older than me and started out with UC and ended up with CD. I’m scared to follow in his shoes!!

    The doctor had started me on Lialda which I was scared to be on due to all the stats on it. I didn’t have much choice. The 2nd or 3rd day on it I got severe migraines that I threw up and went home from work (nurse at a hospital). So against doctor’s orders I started taking half the dose (1 pill a day). Symptoms were better as far as side effects but UC was not much. So I started taking full dose, bang headaches back but getting better.

    I noticed my stools are more formed and less blood and mucus, but either right after I eat or within an hour I am running to the toilet. I feel like I can’t go anywhere. I don’t know what to eat anymore because it seems the foods that bother me change. I don’t know how to stay normal.

    I hate it that I spend my days off healing up. I think there is less blood and mucus – at least I am going less that last May. I just don’t know anymore. I think I am changing GI doctors, because this one I have is poor on bedside manner and does not really listen to me. He thinks the same applies for all – including medications. I don’t agree. Some foods might not bother me seem to bother others. I think my doc is only in it for the buck and recognition :(

    I always have low back pain that NEVER goes away. It might lighten up or get worse at times. I did start drinking protein drinks suggested by my family doc which seems to help. I use yogurt in it.

    Oh I would say the last two months I have been faithful with my meds. How do I know when I need to think of changes? How long does it usually take people to go into remission? The weight loss for me is a good thing, but I did notice my hair is thinning :( I hate feeling crappy all the time. I noticed I am starting to gage my activities to how I am feeling and how far away from a decent toilet I’ll be.. so depressing and makes me bawl. I always find a bathroom where nobody can hear how noisy I am – turns the water on before going into a stall.

    I am so lost and unsure… I just don’t know anymore :(

    • Tamby November 6, 2012 at 9:27 am #

      Kathy,
      I am so sad to hear how you feel. Our stories are so similar. I too gage my activities around how I am feeling at that moment. And as for the foods I can totally relate. Some days a food that was a trigger or so I thought has no effect on me and others a glass of water sends me running to my throne room. :(….. I have adjusted my diet and have been keeping track and still can make little sense of it all. I see a specialist on the 19th of November and am hoping for some answers. My hair… well lets say I have about a month before I am rocking a 25 hair pony tail. It is so thin :( I am going wig shopping next week…. Kathy I would love to read your story, what is it called?
      Thanks in advance….
      Have a great day UC’ers…

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