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I’ve Gotta Get Outta This Place

Richele Sept 2013Intro:

Hello again! Been a while since I’ve posted on here but here it goes…My name is Richele, I’m 32 yrs old. I am a very proud mommy of two amazing girls, ages 7 and 10. Wow! I was diagnosed with UC in 2006, right after my youngest daughter was born. This disease has put me in the hospital too many times to count. I am currently feeling “ok”…but I know I can do better!

Some more about me:

Most of the things in my house were either found at a thrift store, or picked out of the trash and reconditioned. I love, love, love finding treasures in the trash and then making them beautiful again. I have always enjoyed working with my hands and am pretty handy around the house. I tell my girls on a regular basis, “You can do anything a man can do.” Change a tire, fix the garbage disposal, mow the lawn, change the oil in your car…ANYTHING! Just doing my job, raising empowered girls.

Symptoms right now:

Current symptoms…diarrhea about 5x a day. Nearly constant, explosive gas, bloating, gurgling. Yay me. Increased, widespread joint pain. Occasional chills, fatigue. Anemia. Yellow eyeballs. Headaches. Little acne like bumps around my ears, eyebrows, chest, shoulders, and back. I don’t know if these symptoms are side effects from Remicade or what. Anyone have similar experiences?

I’ve Gotta Get Outta This Place

It’s been a long road to travel. Having had this disease for almost seven years has certainly taken it’s toll on me. My original story “Pooping Machine” was posted on this site last year. Since then, I have run the SCARY MEDICATION gauntlet. Sometimes there just isn’t a clear answer as to what you should do to get your life back on track, so I started taking 6mp in December 2012. “6mp and Away We Go” The initial side effects were terrible…nausea, vomiting, hair loss, weight loss, weakness, fatigue…just to name a few. But eventually, I got used to it and felt alright. Meaning, I wasn’t crapping my pants in public and stuff like that. I felt like I had some semblance of my life back. My energy was good, I stopped puking, I felt pretty stable for the first time in a long time!

Around January ’13, I started having issues with my poop DR. I was no longer receiving the level of care I needed, so I dumped him and found a new DR at the University of Michigan, that I trusted and continued on 6mp. All was good for a couple of months, until… I had a colonoscopy in April ’13 which showed increased inflammation throughout my entire colon!! 6mp wasn’t doing the trick. I was really upset. Things were pretty bad in there and I had high hopes for 6mp. My DR urged me to begin Remicade treatment since 6mp wasn’t working and I was/am at risk for cancer or perforation of the colon, irreversible joint damage, blah blah blah…it all scared me enough to try something even scarier. I never thought I would turn to Remicade, but here I am.

My first infusion was two days after my 32nd birthday, July 23, 2013. I was so nervous and actually had thoughts of running out of the infusion center screaming and crying. I didn’t. I survived round one. I just had my third infusion on September 3….which was my kids first day of school! How awesome is that? :( There is definitely a dark cloud looming over me called Remicade and the thought of taking this drug/poison is quite honestly terrifying.

At this point I don’t know what else to do though. I want to at least give it a try for a little while…but I keep expecting something “bad” to happen. I’m trying oh so hard to stay positive, take it all one day at a time, be good to myself and all that. But I feel lost. And at times, angry.

Medications:

Currently taking:

6mp 50 mg as well as Remicade infusions every 8 weeks from here on out.

DR wants to keep me on 6mp for a few months to give Remicade a chance to start working, and to “fall back on” in case I develop antibodies or become allergic or whatever.

So far my side effects have been tolerable? I guess? I still have ups and downs, good days and bad. Probably more good at this point though. I am, however, tired of feeling so achy all of the time. Remi is supposed to help that too, but so far it seems worse. Anyone have any experience they’d like to share? How long did it take for Remi to start working for you? What side effects did you/do you experience while on it? Where is the light at the end of this LONG DARK TUNNEL?

written by Richele

submitted in the colitis venting area




13 Responses to I’ve Gotta Get Outta This Place

  1. Matt September 15, 2013 at 12:56 am #

    Hey Richele,

    Sorry to hear about your struggles with this shitty disease. I have 3 kids so I know how much tougher it can be with little ones. I breaks my heart to hear my 2 year olds every time I get my shoes on ask me if I’m going to the Dr. “You go Doctor daddy?” I had great results after my 3rd remi infusion, never felt better. Sadly after my 4th I built up the antibodies to it even while taking Methotrexate to combat that. So now I have to decide on Humira or IDK surgery? So sick and tired of being sick and tired. Trying poison after poison. One day someone will figure this thing out for good! Hang in there
    Best of luck
    Matt

  2. Don
    Don Makowski September 15, 2013 at 7:11 am #

    Hi Richele! Thanks for telling your story. I was diagnosed in 2007 but have actually had UC since early 2006. Just didn’t want to deal with it so I did as so many do and fooled myself into thinking it would get better by itself. I feel the same as you about meds and have put my doctors off and have only been on the SCD until recently. The diet helped at first but stopped working for me after awhile. Gut bacteria and the balance that is needed is such a mystery. That is why one thing works for one person but doesn’t help another. I was scheduled to go on Remicade but couldn’t go through with it. Recently I self medicated 60mg/day of prednisone and that is working well to get me out of this flare and heal my colon. I am planning to do fecal transplants at home. My doctor is open but would prefer that I got into a clinical trial. Clinical trials won’t accept you of you haven’t tried their meds and had them fail. They are very expensive also. Hence home therapy. I hope that you have luck with the Remi. I will give in to my doctor if the fecal transplant therapy doesn’t work. What else can we do right? We need to work, play, and be there for our loved ones. We need to live and living with constant fear of crapping yourself is not living! Good luck and keep us posted.
    Later,
    Don

  3. bev September 15, 2013 at 2:12 pm #

    I am so so sad about all of those poisonous (as you call them) meds, Richele. I just still do not understand why Ucers have to be treated so ‘harshly” when these drugs do not even help the root of the problem. Do you ever wonder why thesere our only choices from the medical community??

    Why are we not given natural options?? Good bacteria. We lack it. We need it. So simple, yet nobody has devised that perfect way to get it in and keep it in…

    I’m sorry. I read all of your symptoms. ‘Better men’ than us would not be able to handle what you’ve gone and are going through. I was sick enough just on asacol…I cannot imagine putting remicade or any other nasty stuff into my body. If it isn’t working…why do it any more? Seriously. You do not have to. I know what the doctors say. They say you ‘should’ or you ‘have to’ at least give it a try….but why??

    I know you’re a strong lady…I’ve been on this site as long as you have and I’ve read all of your posts. You keep taking the meds recommended, waiting for something to work…increasingly frustrated and sick…and, well, they won’t work, Richele. I hate to say it, but I’ll be the asshole who will say it. I am so tired of the way UC is treated! Not just tired, but pissed right off!! You are a strong gal, but you are weakening your body. When you come out the other side…will you feel better…or will the UC just be in remission, and you may have all sorts of other issues?

    I care about you…about all of us. This madness has to stop. I don’t believe in this…treating UC with biologics and immune suppressors. They are designed to knock back the inflammation…but not treat the root cause…bacteria…then it all comes back again, and maybe, just maybe, we are even more vulnerable to other illnesses than we were before we took those meds….I’m so sad about all of this.

    Bev

  4. KimberlyHI
    Kimberly September 15, 2013 at 3:29 pm #

    Hey Richelle,

    I have been on remicade and 50mg 6mp for about a year now. It only took about a week for the remicade to kick in for me, I was just about normal after about 2 weeks. At the time I was also doing 150mg of 6mp, but my hair was falling out, I had bad acne, and I was nauseous all the time, so we slowly dropped down to the 50mg. I have heard it can take a couple months to work, but in my case it worked very fast! I was in remission for just over 6 months, went all 8 weeks with no issues, until about 3 infusions ago where at 4 weeks I would start having issues so we changed me to 6 week infusions and I have asked my doctor if I can get off remicade. He doesn’t want me to stop it right away but our plan is to see how I do with remicade and lialda together plus my 50mg 6mp. If I do well we may try dropping the remicade. I had told him I didn’t want to take these immunosuppresant drugs anymore. I started a strong 50 billion probiotic among the meds and hoping I stay in good shape. If I can get away from the scary drugs that would be great! I would rather be on lialda than the other drugs. I really hope you feel better soon, I know when I started having symptoms again I was a little mad-here I am taking this powerful scary drug and after 6 months it’s stopped working?? Really? Well maybe it was a good thing so maybe I can stop taking it eventually…but at the same time the options seem to be getting smaller! Especially since I don’t want to go the humira route. Wishing you the best!

  5. Dede Cummings September 15, 2013 at 6:26 pm #

    Hey Richelle,
    I read your posts, and all of these wonderful comments. It is really hard to have to take the combo drugs and not be feeling great. I can really sympathize with you about this. Plus the side effects are such a drag. I have a combination of Crohn’s and UC, and they want me to take Remicade and 6MP. I have put it off or seven years. I started going to a naturopath, and we ended up writing a book together… It has been a long road, however, but the SCD is working to some extent, though my disease (the Crohn’s part/not the UC art) is progressing. You know worked for me? Actually surgery and a diet-lifestyle-alternative treatment combination. I have no sympt is, but still have Crohn’s. I decided I would say NO to my gastro team, and NO even to the Mayo Clinic (they said Asocol, but also agree my disease is classified as severe…). Some people think. A crazy and should suckmitmup and take the drugs, but I am sooooo not ready to put the poison into my body, maybe I am crazy, but I had one foot of Sigmoid colon removed, and one foot of small bowel removed, and I figure there’s more where that came from! The risks of surgery are major (you can get infections, etc.), so that is a tough decision, but I wonder if you’ve talked to your dr. about surgery? I liked hearing that Din is doing the at-home fecal transplant! Don, keep us posted. I feel so bad that Kimberly and Matt had complications (you want the darn drugs to work if you have to take them!), and I hear you, Bev, about feeling frustrated…. Richelle., there is a new study about the efficacy of just taking Remicade without 6MP….it is due out in October. I told my doc I am waiting for the results,,, I will keep you all posted, and Adam, of course. Why take both, if the study shows one works. The goal is to suppress your entire immune system, giving your body a chance to heal. If this doesn’t work, it might be time to look at alternatives.

    But don’t despair— For the aches, take a hot bath every night after the girls gi to s,eep: use lavendar oil, and Epsum salts in the tub, and light some candles and just relax…. Take Omega 3 pure fish oil every day (Barlean’s is a good brand). Also, try goong off wheat for 3 days to a week, and see if your joints feel better; take probiotics, and get lots of rest (lol, easy with 2 young kids, right?), daily exercise, at-home yoga (I use Rodney Yee’s A.M. yoga), acupuncture, eat a really simple diet of organic and healthy food that you know you can tolerate — lots of chicken soup, homemade…. Keep a food journal, and daily record of how you feel. And hang in there—we are all in this together!

  6. Richele
    Richele September 17, 2013 at 7:50 am #

    Hi guys and gals,
    Just wanted to update you all a bit…since I wrote my recent post, I went to visit my DR. My joint pain was worse and diarrhea increased since starting Remicade…turns out I have “serum sickness.” Basically that means the antibodies in the medication clump up and deposit themselves in my joints, my immune system rushes to the rescue, which ends up causing increased inflammation. yay. As far as the increased diarrhea, I never noticed any improvement while on Remi, it wasn’t working to begin with. So I am stopping all meds….for now. I have to flush all of this crap outta my system and might try Methotrexate in a month.
    Bev, I totally agree with everything you said. Medication is such a slippery slope! As these medications wash out of my body, I am going to be paying close attention to how I feel. I am afraid I am going to flare. But what I’m doing isn’t working anyways so….what the hell? I have to say thank you for the pep talk. It brought tears to my eyes because only a person who has experienced this disease firsthand can truly understand any of this. Your words were so encouraging and I really appreciate you saying how strong I am. It means so much to me!! I really needed to hear that. Thank you.
    Matt and Don, I am so so so so so sick and tired of feeling sick and tired. I want to try to live a normal life…but at what cost? I feel so confused and frustrated and I am trying to think about the future too…like if I don’t do SOMETHING to get this disease under control once and for all what could happen to me? My kids have been through so much already. Having a sick mom is extremely difficult on them too. :(
    I’m really trying to eat like a champion, meaning no grain, just healthy protein and veggies. It’s difficult. Does anyone have any advice about how to start SCD or similar kind of diet? I need a pep talk.

    Gosh, that’s all I can say for now.
    Tearfully yours,
    Richele

    • bev September 17, 2013 at 8:27 am #

      Oh, Richele, you have brought tears to me eyes, as well. I was so sad in my heart reading what these meds are doing to you…to anyone who takes them. The doctors have no good options for those of us with UC. I really do try not to get angry with them (even though, they can see what these drugs do to people, and that they almost NEVER really work, yet they just keep on prescribing them…plus, we are desperate and will do almost anything to get relief). They are using the only tools that they have…HOWEVER…they ARE poison. Our bodies are not designed to metabolize and break these chemicals down, thus we end up often even more ill, and with other, new problems.

      Frustrated…that’s the word, isn’t it?! The one word that best describes how we have probably all felt having UC. It’s the worst…

      Have you tried that Ultimate Flora Critical care probiotic? On an empty stomach and then no eating for at least half an hour? I really do swear by it, Richele. I know it seems like it can’t possibly work, but it did, and does for me. This condition is seriously based and rooted in the loss of our good flora, or bacteria. That rules our whole bodies!

      I am so sad that you are so sad. I want to make you smile. I wish I could do that…make you better…this probiotic is really miraculous…I have had to take two per day when I made the mistake of trying a different ‘colon’ probiotic that really screwed me up. The UC pooped back up, and I had to get the right bacteria back into me. You may need to double up at first, one first thing in the morning…then no food…only water for at least half an hour. Then another one about 4pm, 4 hours after lunch but at least an hour before supper.

      Trust me…I want to help you…I want you to feel good again….you deserve it…you can do this Richele, I promise. After you get the probiotic into your system, and it’s working, I can help you further, like if you are still bleeding, you can add the fermented L-glutamine. That heals the ulcers in the colon. Talk to me anytime…ask me anything…ok?

      Bev

      • Richele
        Richele September 17, 2013 at 8:30 am #

        Thanks again Bev,
        I’ll definitely keep you posted :)
        Richele

  7. bev September 17, 2013 at 8:29 am #

    …I meant popped back up…not pooped back up…Freudian slip?…lol

    :)

    • Richele
      Richele September 17, 2013 at 8:31 am #

      Hahaha!! I figured you meant popped…but pooped sounded alright to me. ;)

  8. bev September 17, 2013 at 8:47 am #

    Lol…I laughed out loud when I read it back! I thought you might ‘appreciate’ the mistake…

    Did you laugh? I hope so.

    :)

  9. Sharon September 17, 2013 at 2:54 pm #

    hi Richele, I haven’t been commenting lately because I am currently in a tough flare myself. I have 4 kids ages 7,9,13, and 15. My husband is awesome but he commutes n hour to work and works long hours. He is actually working part time this week because I am so sick. I am keeping track of all food, bms, supplements etc so I can say with confidence that I am averaging over 20 bloody bms a day/night. I have been on 30 mg of Prednisone for almost 2 weeks from a high of 60mg. I take L-glut, VSL probiotics, iron, Uceris (also known by its latin name “USELESS”), and just ran out of Astaxanthin which I probably wont buy again right now.

    I totally understand how tough it is to be a mom and do this. My daughter turns 10 on Thursday and we are having a sleepover, craft party this weekend. She is so worried I won’t be able to pull it off. Of course, I will because it’s what we do. My older kids will pitch in and she will have a great time.

    I understand your frustration with meds but for me, Asacol was a wonder drug for 20 years. I can no longer take ASA drugs thanks to a Lialda incident, can’t take 6 mp and function, and failed with Humira after a honeymoon period of about 8 months or so. My only medical option is Remi but even my Dr feels its not right for me. Soooo…. I started GAPS diet yesterday.

    I still haven’t decreased symptoms but I at least feel confident that I know exactly what to eat. I find great nourishment in the chicken broth in place of my morning tea and throughout the day. Before I started I spent a lot of time researching sites, buying and preping food, and cooking a ton of stock. I also bought a yogurt maker which I am waiting for my first batch.

    Another huge help for me is my church. Not only have I been getting encouraging emails and texts, but they will start delivering a few meals a week so that my family can eat and I don’t have to cook for them too. I already had these relationships and have gotten this kind of help before. I know not everyone has that but some churches have volunteers in place to help with meals in urgent situations.

    Anyway, I will be happy to be your pepper upper since it sounds like we are kind of in the same boat. I will keep you posted on my GAPS journey and I will keep you in my prayers.
    Sharon

  10. Richele
    Richele September 17, 2013 at 6:22 pm #

    Hi Sharon,
    My Dr did mention Uceris if my bm’s don’t slow down soon. I haven’t done much research on that one yet. The thing is, I’m not even at my worst! I’m only having about 5-7 bm’s a day, which seems like nothing compared to 10-15. And no blood. Thank goodness! I guess I just thought being on all of these “designer drugs” would have helped me feel “normal” again. Whatever in the hell that means anymore, I’m not even sure. We’ll see how I feel coming off of all of them in the next few weeks. And then Methotrexate? Gah.
    I totally feel you about the kids too. You said, “Of course I will because it’s what we do.” I know just what you mean. We never stop being Moms. I have to say, my kids keep me going, in a good way. They give me the energy to move on and get shit done…and sometimes they suck that energy right out of me! hahaha! When they’re not around (like at Dad’s house) I feel sluggish and unmotivated. They’re little beacons of hope.
    It’s weird, even though I have tried so hard to not let UC become my identity, it has. Have you ever had the “fear” of achieving remission? It’s like, if I’m not sick, who am I?
    Anyways, thank you for your comment. It’s great to have someone on here who is in the same boat, with kids and such :)

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