Ulcerative Colitis Tips


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How Long Do You Fight the Inevitable?

Meet Joanna:

I’m Joanna and was diagnosed with Ulcerative Colitis at 17 after having some bleeding and being constipated for years. I’m 23 now and feel like I’ve tried everything. I’ve had 8 colonoscopies and my last three showed pancolitis. I’ve always been a natural type of person, never taking medicine unless absolutely necessary- that is until UC happened.

Some more about me:

I am from Pittsburgh, Pa and enjoy reading, watching movies/TV, hanging with my family, and working out. I am very outgoing and fun when I’m not feeling so crappy.

Colitis Symptoms:

5-8 loose BMs a day, urgent, bleeding, cramping

My Colitis:

All my life, I had constipation problems. In my teen years, they got worse and I probably tried every laxative there is. I ended up seeing some blood in the toilet when I was 16 and ended up going for a colonoscopy. Doctor told me I had proctitis, to take Rowasa, and eat more fiber. Well, I was eating more fiber than humanly possible so I knew that wasn’t a problem. I tried the Rowasa and the bleeding remained. I ended up looking online for natural detox diets and found a vegetarian diet. I followed it for a week and my bleeding was gone. I decided to stay a vegetarian after that. For years, I was totally fine and hadn’t seen a GI.

It was when I decided to try raw fruitarianism that things went south. I was 21 and was following the 80/10/10 diet when my bleeding and constipation started again. I was shocked because I heard it was a really healthy diet. Well, I ended up seeing a new GI and he started me on enemas again and Lialda. I reacted very badly and developed a ton of symptoms- diarrhea, urgency, cramping, hives, burning skin. My doc said it couldn’t possibly be the meds because they couldn’t make things worse but I disagreed. I decided to try natural methods all that summer- different supplements from naturopaths and the IBD diet by Jini Patel. I ended up in the hospital from these weird herbs I got from one naturopath and from being so dehydrated. That week, I started on a ton of meds- prednisone, canasa, cipro, flagyl, 6mp, remicade, zofran, prilosec. I had no idea what to think because the doctor said I had to be on all of them to get better.

I stayed on them and by January this year, I was flaring again. The remicade stopped working and the 6mp caused really high liver enzymes. After that, I experimented with everything- fecal transplants, LDN, Vit E enemas, VSL, Renew Life probiotics, slippery elm, marshmallow root, turmeric, l-glutamine, astaxanthin, l-carnitine, NAG, kefir, Vit D, fish oil, activated charcoal, colostrum, iron, Vit C, SCD, Paleo, B-12 shots.

I am at my wit’s end with being sick and am starting Humira. I am hoping it works because all of the studies going on in my town are for Crohn’s- good ones like stem cell transplants and worm therapy. I would’ve tried them before Humira but UC isn’t as popular with research unfortunately.

My mom and sister are very supportive and help me with everything. My dad has UC but has been in remission for 24 years, med free, so he thinks I am making it up or causing it myself. He is very un-supportive so we don’t talk. I just want to be myself again and have a job and do things with my friends. I hate sitting at home all the time missing out on life. I have a degree in health and physical activity and was teaching yoga, nutrition for kids, and various other fitness classes before my flare got really bad. If it comes down to it, I will have my colon out and live with a bag because I just don’t wanna live like this.

Colitis Medications:

Currently: b-12 shots 1000mcg, vit d 4000-10,000 iu, coconut kefir, bovine colostrum, astaxanthin-12 mg, spatone iron, vit C, cod liver oil

Soon- humira

Tried- rowasa, prednisone, endocort, hydrocortisone enemas, sulfa enemas, 6mp, remicade, zofran, prilosec, LDN, cipro, flagyl

written by Joanna

submitted in the colitis venting area




26 Responses to How Long Do You Fight the Inevitable?

  1. K December 17, 2012 at 1:45 pm #

    Hi,
    In my case I guess it was 3 days. I was diagnosed with uc and hospitalized on a Wednesday, almost 40 years ago now. On that Saturday the colon perforated and so was taken out a few hours later. I really had no choice, but in reading posts on this site over the last half year, I guess I was lucky – disease-free three days after diagnosis.
    The downside is, of course, that I have a “bag” that I empty about 8 or so times a day/night, and have to spend 20 minutes putting on a new one every 4th morning. And about 10 years ago I had an adhesion, so surgery and 12 days in the hospital then.
    But I don’t have uc or any of the cruel symptoms associated with this terrible disease.
    I wish you all the best, Joanna, in whatever decision you make.

    • joanna December 17, 2012 at 8:00 pm #

      wow that was fast, k. i guess you really didn’t have time to absorb all the UC wonderfulness anyways. your decision was made for you- maybe it was a good thing? who knows? i always tell my docs not to perforate my colon during colonoscopies because i had a patient ( i used to work at a doctor’s office) who was getting his routine check up and it happened. he was about 75 at the time and has a hard time with the bag (due to other issues).

  2. Matt December 17, 2012 at 4:00 pm #

    Hi Joanna,

    I hate to suggest it (and will no doubt get some abuse for doing so) but have you considered taking up smoking? Search it on this site and you’ll see it’s worked for a lot of people. . There’s even a doctor who recommends it. I’m an ex smoker and my UC started when I stopped and went away again when I started and flared again when I stopped. I’m still not smoking but am running out of drugs and diets to try. For me, I think that when I’ve tried them all or the doc advises surgery, that’s when I’ll light up again. Clearly cigarettes are bad for you in the long run but if they make you life liveable on the way there, maybe it’s worth a shot?

    Just a thought.

    Matt.

    • joanna December 17, 2012 at 7:35 pm #

      hey matt, i actually never considered smoking. i have asthma so everyone in my house always has to smoke outside because it just kills my lungs. do you know what it is about smoking that would help?

  3. alex December 17, 2012 at 6:01 pm #

    Unfortunately unless its an emergency, its a decision no one can make for us.
    Sometimes I find myself wondering the same thing. Usually when im tired and had a bad day with it. Then if I get some decent sleep, I wake up with that old resolve that it will get better if I do battle with it for another day.
    I must say you have tried a lot of different avenue and whatever you choose next I truly hope it works for you. Im sure you deserve to be happy and pain free. I think we all do. Good to hear from you,
    Alex

    • joanna December 17, 2012 at 7:57 pm #

      thanks so much, alex. i’m the same as you. just thankful to be waking up every day because it could be worse.

  4. Lisa OH
    Lisa Kapp December 17, 2012 at 6:13 pm #

    Hi Joanna. I had an emergency colectomy d/t toxic megacolon. I went the j pouch route, so I’ve had a temporary ileostomy which will be reversed on Thursday when I will be able to poop out of my butt again. Having ‘the bag’ isn’t all that bad, actually. I was not a fan when I woke up from that first surgery, but now it’s absolutely no big deal and doesn’t get in the way of my activities. I’m kind of nervous about giving it up and having to get used to pooping again, which I’ve heard takes some time. One day at a time. I wish you the best, Joanna, and hope you find some relief from the UC symptoms soon.

    Lisa

    • joanna December 17, 2012 at 7:56 pm #

      hey lisa, good luck on your surgery this week!! i really hope it goes smoothly and you’re out of the hospital fast. i honestly don’t think i’d care if i never pooped out of my butt again. if it causes me this much pain, then a bag just has to be better!

  5. bev December 17, 2012 at 6:54 pm #

    Joanna, I so agree that meds make us feel even sicker. It happened to me on asacol(lialda) as well. I had horrible side effects. My doctor, too, told me it was not the meds, but the UC that was causing all of those side effects. What a crock…

    Somehow, I am in remission and med free, on the Renewlife probiotics and fermented L-glutamine powder. Almost 11 months now. I do not know why this worked for me, but it has…hopefully it’s just not an end of flare coincidence. I don’t feel like it is. I feel like I am ‘cured’ this time. Every symtom is gone and that has never happened before. I too have pancolitis. I have had UC for 15 years and have never really attained what I would call ‘remission’ before.

    I totally understand your wish to have your colon removed. I have felt like that a time or two…and I will surely do that before I will ever ingest another questionable or dangerous drug!

    Cheers,
    Bev:)

    • joanna December 17, 2012 at 7:54 pm #

      i hear ya, bev. i absolutely hate taking the meds because i know they really aren’t doing any real healing- just giving me temporary relief until the med fails or the side effects make me stop. i honestly don’t have a lot of hope for humira just because remicade quit working so fast for me. have you heard of people using bupropion for IBD? i’ve been reading so much about it and even though it’s an anti-depressant, it’s a TNF inhibitor, too. it’s side effects are WAY less severe than humira which i’m terrified about taking.

      i just don’t know why my body can’t heal itself like with other people i’ve talked to.

      • sc December 17, 2012 at 8:41 pm #

        Joanna,
        Have you ever looked into something like biofilms and tried a biofilm protocol?
        Just a thought when things are not working as they should this could be one possible reason…

        • joanna December 17, 2012 at 9:19 pm #

          hey sc, i don’t know much about this at all. i’ll look into it. it’s worth a shot.

          • sc December 17, 2012 at 10:01 pm #

            A friend of mine spoke with Dr Barody and he mentioned that biofilms are one likely cause to investigate if FMT (and I guess other things which tend to work) doesn’t do what it should. If you try it, keep us posted and good luck!

      • bev December 17, 2012 at 10:38 pm #

        No, I have never heard of bupropion Joanna…I’ll have to read up on it.

        I am at a complete loss as to why you can’t achieve some relief. It is so not right…or fair. You try everything. I am crossing all of my fingers for you, Joanna. You continue to go through so much…and I know you are tired of it all. I feel for you so very much…

        x

  6. Katherine December 17, 2012 at 11:09 pm #

    Hello, I am sorry to hear that you are so sick. I am 24, and just had my final of the three j-pouch surgeries. I can honestly say that I am so much happier than I ever was with UC. I think it’s important to try everything- natural remedies/diets and medicines, before making the decision to have surgery. It is a big decision. For me, it was an emergency situation and I had to have my colon removed to live. I think it is wonderful that some people are able to achieve remission with diets and medicines. However, for people like me with more severe cases, there was no controlling the inflammation. It is unfair for anyone to tell you that you are “causing it” or making it worse- you have open bleeding ulcers all over your large intestine- you can’t control that. I once had an uncle tell me to be vegan, that it would cure my problem. When I told him I hadn’t eaten in 4 days and still was bleeding 40 times a day (literally) he just kind of stared at me dumbfounded. When you have the surgery, you will have a temporary ileostomy. I had a hard time getting used to it. But the end result is so, so worth it. I had endured 4 hospital stays in 2 months before my surgery- it just wasn’t a life, I wasn’t living at all. I spent all my time in the bathroom, miserable on prednisone, remicade, imuran, lialda, welchol pills, numerous enemas and suppositories. If it comes to surgery, I just think you should know that it is going to be a difficult journey, but that it will be very worth it.

    • Lisa OH
      Lisa Kapp December 18, 2012 at 6:30 am #

      Hi Katherine. When did you have your takedown, how was the recovery, and how was getting used to using your jpouch (i’m having takedown thurs)?
      Thx,
      Lisa

      • Katherine December 18, 2012 at 12:21 pm #

        Hi Lisa,
        It has not even been a week for me yet (I had it last Thurs), but I already feel pretty good. The surgery itself lasted 45 minutes and I was only in the hospital for 3 days. I am still getting used to going out of my butt again.. but it is not as painful as I had anticipated. It does burn a little bit, but after dealing with the bag for so long, nothing seems too hard. I did get up a lot last night, but again it hasn’t even been a week yet. This incision is more painful than the laparoscopic ones, but that’s probably a given. It’s probably a 3 inch or so incision going vertically alongside my bellybutton. I will say my stomach is pretty swollen, but I am hoping that goes down in time. All in all I can’t complain, just hoping the bathroom thing gets into a normal rhythm and that the burning subsides. I hope all goes well with your surgery!

    • joanna December 18, 2012 at 2:30 pm #

      katherine, i agree that it’s hard when people just don’t understand. they tell you all these random suggestions and blame you for your illness! i remember when i was in the hospital last year and on bowel rest for 7 days- i was going to the bathroom at least 20x a day while my dad was yelling at me saying my vegan diet was causing it (the opposite of your uncle). i was like “there is NO food/drink going through me! how do you explain this??”

      i’m so glad you are doing better. i’m sure it’s been hard adjusting to your new system. my main reason for picking a bag over a j-pouch (if i have to) is hospital time/recovery. every medical intervention i have seems to affect me way worse than the average person. just lots of problems with ivs, water retention, side effects of meds. i just don’t feel like i’d be one of the lucky people who’d come out okay and never have pouchitis. i met with a surgeon in september who told me he prefers doing colectomies with a permanent ileo. because people are always coming to him with problems about the j-pouch. i know it’s never the same as a normal colon, but i’m sure it’s way better than a UC colon.

      • Katherine December 18, 2012 at 9:53 pm #

        Hi Joanna,
        I completely understand your fears about the jpouch and wanting a permanent ileo. I have to say, however, that the success rate for these surgeries is around 95%. I think it’s important to realize, too, that a lot of what you read on the internet is from people who have had bad experiences with their pouch and are writing about their problems and terrifying people like you and me. I am so like you in that I have had horrible reactions to medicines, have had to stay in the hospital for 2 weeks after surgery when most people stay 6 days, etc. I am not trying to persuade you by any means, but I think that if you are at all interested in getting the jpouch, then you should do that. There are many surgeons out there, very good ones, who recommend the jpouch. I just feel like I can relate to you because like you, I am young, I was active, I never laid around or wanted to stay at home if I didn’t have to. I will not say that I “hated” my ileostomy, but I did not feel like I could do anything I wanted with it. It kept me from feeling “normal.” This is just my opinion, I am not suggesting that you or anyone else would or should think this way. I think it is VERY POSSIBLE to have a completely FULL LIFE with an ostomy, please don’t get me wrong. I just wouldn’t want you to feel that a jpouch is going to end up in pouchitis because you had a horrible experience with your medications etc with colitis. It is so nice to be going to bathroom out of my butt again, with no bag hanging off of me, knowing I can wear skinny jeans again. Let me know if you have any questions about anything, I really would like to help if I can. I wish I had had more people to talk to while going through all of this. This website is a wonderful tool. Use it! I would also recommend reading Blake’s story under Surgery. I wrote him all kinds of questions and he always responded. He wrote a very detailed account of all his surgeries and it really helped me. Just know that there is hope with all of this!

        • joanna December 21, 2012 at 9:31 am #

          katherine, you are so sweet! i have noticed most of what i read online about jpouches are people that haven’t had a great experience with it. obviously, wearing a bag isn’t the most attractive option and it’s probably has its own inconveniences. i’m not really worried about what people will say or anything like that. i just wanna be happy again. i do love skinny jeans though so i’d definitely have to find a way to squeeze it into that. i will think about the jpouch more now that you think i should. my GI said he thinks i am the perfect jpouch candidate because i’m very skinny and have a small frame (i have no idea if this even makes a difference haha).

          i’ve heard there might be some new meds coming out in the next few years. i’m hoping humira can get me into remission for a little while. i will honestly try everything to get better. i know each treatment has its risks but so does having a crappy colon.

          • Katherine December 21, 2012 at 2:21 pm #

            Like I said, not trying to persuade, just want to make sure everyone has all the good information they need to make an informed decision. If and when you decide to get surgery, you may not be bothered by your ileostomy. It differs for everyone. Like I said, it was difficult for me. But just so you know, I had my last surgery a week ago (literally was being cut open 7 days ago), and today have been out shopping all day doing christmas stuff. I think I used the bathroom once in 5 hours, and even then I could have held it. So far, my pouch is treating me nicely. Hopefully it will continue to be this great, it was definitely a long road to get here. Please let me know if you have any questions or thoughts or concerns or fears etc. I would be happy to help!!!

  7. KimberlyHI
    Kimberly December 18, 2012 at 12:39 am #

    Hey Joanna! I just wanted to comment on what Matt said in his post regarding smoking-I had the same experience as he did, I quit smoking at 20 and within months I got my first UC symptoms. Over the years I have quit and started several times, knowing that if I smoke my UC is better. I have quit now since March 2011 and do not plan to start again because now I have a baby who I don’t want to expose to smoke. So I take the medications Imuran and Remicade which are greatly helping my UC, it’s just they have side effects that suck!
    So, I had this GI doctor when I lived in California who was wonderful, and I asked him about the smoking thing. He was very honest about it. He said well of course I would never say smoking is the answer to UC but it is true that it appears smoking helps UC. He said in studies they tried nicotine patches on UC patches and it didn’t work, it had to be a cigarette, so they think it’s something about the smoke itself.
    I frankly think there is not much difference between smoking and taking some of these weird meds-either way you may end up sick anyways. But now that I’ve quit for good I wouldn’t want to go back, once you quit smoking you realize how much better you are without the smoke, well except that your UC acts up :(
    Good luck and happy holidays!!

    • joanna December 18, 2012 at 2:23 pm #

      i guess there is something to the smoking. my dad has UC and has been in remission for 24 years- no meds or diet changes. he is a smoker, too. i don’t know if he took a break at the time he was diagnosed (it was when i was born) but i should ask him. it sucks that the nicotine patches aren’t the same! with my asthma, i honestly couldn’t smoke without having a lot of problems.

  8. joanna December 21, 2012 at 9:24 am #

    well, i ordered this product that is supposed to decrease the bad biofilm buildup in our colons. sc recommended looking into this and i found klaire labs “interfase” product. it has all these different enzymes that break down the biofilm barrior. the website recommends supplementing with a probiotic at the same time and since i haven’t found success with any of the ones i’ve tried, i ordered a few SCD legal ones called SCDophilus and SCD Sacro B. has anyone tried this GI Pro Health brand?

    thanks for all the replies, btw. it makes me feel so much better having the support from everyone here. i am waiting to hear back from some labwork i just had done and i’m worried i’ll be getting blood transfusions on xmas. we are having the xmas party at our house so i know i’d be in the hospital alone on xmas : (

  9. joanna January 20, 2013 at 1:41 pm #

    just wanted to give an update since i started humira. my loading dose did not go well at all. i was in a lot of pain from the shots- kind of indescribable pain unless you’ve had the shots. i screamed a lot and cried. after the third shot, my hands/feet/lips/teeth went numb. i was hyperventilating and had to get a paper bag to breath into. i got really cold and my mom brought me a heating pad. i ended up refusing the 4th injection because i was just in so much pain. i thought i was going to faint. my doctor was/is not happy about this at all and says i’ve probably ruined my chance with humira. regardless, he wants me to take the next shots but i am really leaning towards not doing it.

    a few days after the shot, i noticed my right pointer finger couldn’t move. i was a little freaked out but figured it would go away. over the next hour, my whole hand had froze and eventually my wrist. this lasted for about 5 hours. i couldn’t write or type. i called the humira hotline but it was closed. by morning, my hand was fine again. this freaked me out a lot. then last night, while i was making dinner, i couldn’t stand and had to go lay down from all the dizziness and racing heart rate.

    i don’t know what to do. everyone in my family was furious that i didn’t do the 4th shot and they (mom and sister) said i just HAVE to do the next dose.

    just needed to vent a little. i am scared of taking the next dose mainly because of the pain and hand problem.

    • bev January 20, 2013 at 3:49 pm #

      OMG, Joanna…for real? I cannot begin to tell you how much I feel for you and also how I so do not agree with these sorts of medications. How can this be good for you / us at all??

      This is one of the scariest things that I have ever read.

      Too bad that your doctor, and your family are ‘furious’ woth you. Let them try andtake these shots!

      You can and should vent…I certainly would! Always do that…it keeps us sane in such insanity…

      Bev xo

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