My Colitis Story – Wife and Mother to 3 Kids

Introduction:

Hi all, my name is Lori. I am a wife and mother to 3 wonderful children. I was diagnosed with uc 2 1/2 years ago. I have been hospitalized 3 times and have had a total of 9 units of blood!! They say I am currently in remission due to remicade infusions. Any questions just ask!!!

My Symptoms:

Cramping, urgency, some blood and loose stool.

My Colitis Story:

I had been having symptoms like bloody loose stools and urgency and cramping for years. I was pregnant with my youngest about 3 1/2 years ago and the doctors couldn’t figure out why I was loosing weight and anemic. My baby was gaining just fine. Before her birth we determined my gall bladder was bad and needed removed. After her birth I breast fed her. One month after having her my gall bladder was removed, but my problems were still there. Three months later I was only passing blood. I was on the toilet constantly. I was so weak I couldn’t take care of my kids. Everytime I stood up my world went black and I almost passed out. I was falling asleep constantly. Finally I agreed to go to the ER. They knew something was seriously wrong but the released me because they didn’t have a bed. They sent me home with potassium and an anti-diahreal meds but the pharmacy wouldn’t fill them because the cause negitative interactions. I we nt to my Dr. The next day and she was furious!!! She called over to the hospital and they got me a bed ready. I was to go straight there and check myself in. That was the first of 3 stays in the hospital since. All of my stays were 3-5 days. My colon is 90% dieseased. I have needed a total of 9 units of blood. They tried steriods, asacol, lialdia and antibiotics and none of it worked. I am currently on remicade infusions every 8 weeks and they seem to be working. If this doesn’t work they will remove my entire colon. I have however been getting what looks like boils so I’m conserned there might be an issue. I also have gained a ton of weight. Anyone else have these problem?

Where I’d like to be in 1 year:

I love to be in complete remission!

Colitis Medications I’ve Used:

Nothing but remicade has worked for me! If this fails the will remove my entire colon!

written by Lori

submitted in the Colitis Venting Area




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boils

8 Responses to My Colitis Story – Wife and Mother to 3 Kids

  1. Princess PP July 24, 2012 at 3:41 pm #

    Hi Lori:

    My symptoms are similar to yours. I have pancolitis. I am on Remicade and Imuran and I am not in complete remission. I too had my gallbladder removed three months after my daughter was born. I did not have symptoms prior to that and I was diagnosed with UC about 2 years ago. So far I have not had any negative side effects from my medication (knock wood). I have some joint pain here and there but it has actually gotten better. I still have good days and bad days. I never leave the house without using a baby diaper as a pad. I’ve been hospitalized three times and have been told I should have my colon removed. I’ve never had a blood transfusion but I did have iron transfusions on the regular until a few months ago. Now I get one every 6 months. My doctor says I’m doing great but I’m sure he’s never crapped his pants. I take my meds and pro biotics and I am actively hounding my GI doc to do a FMT study out of his office. He is slightly interested but I believe it would work for me. My doc also said I am in remission so I guess by definition he means “not in a flare” because I am not the same person. So I have great days with no symptoms, then a few days with symptoms, then a few days where I have urgency and cramping, then I have one day of total clean out. I have a definite cycle. I hope you get to the point where you have no symptoms! Good Luck

  2. Bev July 24, 2012 at 4:21 pm #

    Hi Lori…

    I have pancolitis…total colon involvement. I am in total remission now. No blood, no urgency. no pain, no more agony!! I’ll bet if I had a colonoscopy right now, it would look like I didn’t even have UC!

    You want remission? Try what I did. I take one good probiotic capsule per day with 50 billion strains, L-glutamine, and astaxanthin. I eventually went off the 12 asacol pills that I was taking per day, one at a time, as I started feeling better on the three fore mentioned things! They cost about $50 per month, too. Compared to drugs, it’s a drop in the bucket.

    99% of doctors will tell you not to waste your money on natural stuff. They will also scare you into thinking that you HAVE to take drugs for the rest of your life. These drugs are dangerous, as well, and can bring about other problems. That’s okay with them, though. Then, you can visit them more, and buy even more meds. A vicious circle…

    I think and believe that we must heal our colons. That is the cure. Our colons are damaged and out of whack when we have UC. We only need heal them. Don’t have it removed until you at least try and heal it. Please. It takes about two months for the probiotics to really work. Along with the probiotics, add L-glutamine, which heals the mucosa lining of the colon) and the astaxanthin, a natural anti inflammatory. Trust me! It worked for me…and I have pancolitis. That’s about as bad as UC gets!!

    You don’t have to discontinue your meds, but you may choose to, you will feel so good. If they are doing nothing except costing you money…why take them?

    Cheers,
    Bev

    • Jovana July 25, 2012 at 9:17 am #

      Hi Bev,

      Congratulations on achieving remission! I am glad you were able to do it without pharmaceutical drugs!

      My husband also has pancolitis. He has not been on any medications for it (due to side effects), and is trying to heal himself using natural methods. I told him what you did to treat yourself and he wanted to ask you a couple questions, if you don’t mind.

      1. In addition to diarrhea/loose stools, he has had blood (almost gone now), and yellow pus (still has that). Did you also have yellow pus?
      2. He wants to buy the exact same supplements you take. What are the brands? I saw on one of your previous posts you take ULTIMATE FLORA CRITICAL CARE (by RENEW LIFE) for the probiotic, but not sure what the brands are for the other supplements.

      Thank you,

      Jovana

      • Bev July 25, 2012 at 10:10 am #

        Hi hi, hi!!

        I would be thrilled to tell you….

        Yes, the probiotic is correct. One of those per day. It took away every symptom, pain, urgency, gas, etc etc etc…except the bleeding. I went into the vitamin store and asked what I could take to stop that…they recommended the L-glutamine because it actually heals the mucosa lining of the colon. They also recommended astaxanthin because it is a natural anti inflammatory. Believe it or not, the astaxathin was in the VISION section of the store! By the way, I was never a ‘believer’ of natural stuff. My doctor told me that all that stuff was basically useless, and a money waster. Hah!

        I take unflavored fermented L-glutamine in powder form, and mix one scoop (the scoop is in the stuff already) with a bit of juice because it ain’t so tasty! Apparently, you can take more if you like, but one scoop has done the trick for me! The brand name is North Coast Naturals. This is what I believe may have taken the bleeding away totally.

        The astaxanthin is made by NOW, but you can probably buy any brand. (I have also heard of HAWAIIAN ASTAXANTHIN on this site, but I can’t find it in my town) It is a 4mg capsule. It is actually algae, I believe, in capsule form. I only take one per day, but apparently, you can take up to 12mg per day, which would be 3 capsules. I think you can buy the 12 mg strength capsules as well. I don’t seem to need more than one 4mg capsule. Because I don’t know which of these two things stopped my bleeding, I am staying on both! They are inexpensive anyway…and it turns out that astaxanthin was featured on Dr Oz’s show as one of the things that everyone should be on!! Google that on youtube or the internet! I was floored when I heard how good it’s supposed to be for everyone, and I was already on it!!

        As for the yellow pus…I have white mucous sometimes…I don’t know if that’s the same thing that your husband has, but I don’t care about it. Everything else is gone!!!

        Cheers, and please let me know how things go. I think I’m really on to something here. How we can actually cure this stupoid so called ‘disease’. Maybe it’s not for life. Just maybe, we can heal ourselves!!

        Bev:)

        • Jovana July 27, 2012 at 9:30 am #

          Bev,

          Thank you very much for the information! :) We will let you know how it goes.

          All the best,

          Jovana

  3. Mary-Ann
    Mary-Ann September 25, 2012 at 6:57 pm #

    Hi Lori!
    So I just started remicade and was wondering if you had any weight gain when you started

  4. Lisa OH
    Lisa September 25, 2012 at 8:04 pm #

    Hi all. I had pancolitis that progressed very quickly to toxic mega colon. None of the drugs worked, including remecaid (I did gain a little weight while on it, but was emiaciated d/t the flare I was in). I had no choice but to have my colon taken out. As I’m reading everyone’s stories, I am struck by how many people have had better results than drugs w/diet & probiotics. None of my docs provided info on this, and in fact, pushed a low residue diet that included a lot of gluten & dairy rich foods. I can’t help to wonder if I had all this info from this wonderful website back when I started w/symptoms, if I would still have my colon. Well, I’m certainly not going to bemoan my lost colon, cuz it’s not comin’ back (i had 2nd jpouch surgery in august, only one more to go!) BUT if I were in Lori’s shoes, I’d try everything that all of you are suggesting. Bev, I am thrilled that you experienced so much success & are feeling better! Lori, I hope you experience remission soon!

  5. pam November 4, 2012 at 7:49 am #

    If anyone out there has been on Remicade at least a year and went off voluntarily, and found out they really needed to go back on it, did it work again? My side effects are psoriasis and really want to take a break and see if that the Remicade is the cause. I have pancolitis and was hospitalized twice before the remicade. Please email as I find it hard to find posts. Dr. does not recommend stopping. realchap9@comast

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