Mayo Clinic Connect
Over active immune system attacking all good as well as bad in my body
@lohavi, I want to say Welcome to Connect. It is your discussion title that caught my attention this morning.
I do not have ulcerative colitis, but I do have a history of some autoimmunity in my family. And I developed cirrhosis of my liver. Have you been diagnosed with any liver disease that is causing this cirrhosis?
Liked by John, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
I’m so sorry you have UC! I was diagnosed less than two years ago and my life has been a living hell ever since. I have been on every drug for this debilitating disease and it continues to escalate! Mesalamine resulted in drug induced acute pancreatitis; remission lasted only 3 months. The budesonide (oral and rectal) did nothing! I have been on oral prednisone and just added the biologic, Entyvio, to the mix. GI doc has advised consult with a colorectal surgeon as removal of the colon and rectum would be the only other option if this doesn’t work. Right now, it is also affecting my eyes (uveitis). I am a 62 year old female that had been in excellent health before UC destroyed my quality of life! Never smoked; don’t drink, exercised since I was 14, and here I am, now – weak, frail and devastated at what my life has become. It kills me what it has done to my husband, too, who is my best friend on the planet and beyond supportive. There are days I literally cannot leave the house!!!I hope and pray that they can cure this disease or at least offer drugs that are more effective without all the horrible side effects. Before I had this, I had never even heard of it! What treatments or drugs have you been on and has anything been effective? Thanks for sharing….
@lohavi Hi, and welcome to Connect. I know nothing about ulcerative colitis, but I did have cirrhosis for which I had a transplant in September 2016. Are the two connected? Mine was also not alcohol related, it was from fatty liver.
From what @dval said, it sounds as if ulcerative colitis is a difficult condition to live with. What symptoms are you suffering from? Having two conditions makes it all the worse, I am really sorry that you are dealing with this. Cirrhosis was enough.
Liked by Jen, Volunteer Mentor, Lisa Lucier, Connect Moderator
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I am sorry for the confusion.
My statement about Ulcerative Colitis and cirrhosis comes from my own experience with the liver disease, Primary Sclerosing Cholangitis (PSC). "For patients presenting symptoms, the disease reveals itself through fatigue, jaundice, itching and abdominal pain from liver damage, with 70-80 percent of patients suffering from inflammatory bowel disease (most commonly ulcerative colitis)." https://connect.mayoclinic.org/page/psc/tab/about-psc/
I had to do a little checking and here is what I found on the Mayo Patient Care and Health information> Ulcerative Colitis- One of the possible complications of ulcerative colitis includes Liver disease (rare).
Liked by JK, Volunteer Mentor, Lisa Lucier, Connect Moderator
I’d sincerely encourage you to view the Gastroenterology and GI Surgery Page on Connect, where you will find many Mayo Clinic experts talking about ulcerative colitis and cirrhosis – https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
I’d also like to introduce you to a few members who might be able to shed more light on your symptoms; please @kathyneal @sherw @guener @peabody88.
@lohavi, are you able to share more details? When were you diagnosed? Do you know the cause for the cirrhosis? How are you managing your symptoms?
Liked by JK, Volunteer Mentor
I have had colitis for twenty-eight years. If you are still suffering please let me know and maybe I can help.
Wow! That’s a long time!! What kind of colitis do you have and what has helped? I’ve completed the loading doses of the Entyvio and will have the labs next week (C-reactive protein and Calprotectin) to check the inflammation markers and determine if the Entyvio is working. I’m off the prednisone completely and have been on a plant based diet for about 2 and a half months and I’m actually feeling better! I’ve stopped bleeding and losing weight. My bathroom visits have decreased from 12-15 a day to 2-3, which is a major relief. I am cautiously optimistic while I wait to see when my next dose of Entyvio will be and if the insurance will continue to cover it. This has been a very challenging and scary two years!!! How have you handled colitis for 28 years??? Thanks for any insight or information you’re able to share!
Yes it has been but I don’t think about it and how long it’s been or I would be in the lunatic asylum. I just got back from a grocery trip so I will just give you a brief reply right now. I want to share with you anything that I think can help. Three years ago, at my worst, I was going to the bathroom up to thirty times a day losing blood as well. I have resisted trying a biologic as I do not like the warnings that come with them on the TV ads. My doctor just shrugs and says all of his patients worry about that too.
Right now I am off Prednisone for a couple of months and am just taking Pentasa three capsules twice daily. I have been through about fourteen colonoscopies over the years and the last one is the one that threw me into a tailspin and started the worst bout I have ever had. My doctor has no explanation for that. I think I was possibly injured but we will never know.
Tomorrow when I am refreshed I will send you the things that might help you that I stumbled upon by accident. Like collagen supplement that I heard
about on Public Broadcasting TV from a female GI doctor. It helps to heal the mucosal lining of the colon. I have left sided colitis.
So I’m off to escape reality right now with my feet up on the couch and my dog at my side. 😆.
Have a good evening and don’t despair.
I don’t know if your doctor recommended a plant based diet. Right now for me I am watching my high fiber intake. The collagen supplement powder has given me a quiescence that I have never had before. It took a month for me to notice and supposedly it takes up to six months to heal the. mucosal lining. Apple Cider Vinegar, raw and unfiltered with the Mother. I get mine at Wal-Mart. It has to be vigorously shaken to mix the bottom residue. I just chug a tablespoon. You can mix it with juice but be sure to thoroughly rinse your mouth and teeth afterward so it doesn’t affect your tooth enamel. This
contributes probiotics to your system and why it helps has not been completely figured out yet. There is something about the vinegar that my body likes.
I quit buying expensive probiotic pills because there is no way of knowing how viable they are.
The collagen supplement can also be found at Wal-Mart but I buy mine in a big black plastic tub from .Amazon for about $26. It comes with a scoop for measuring and one scoop mixed with juice or milk daily. Take vitamin C with it to make it more viable. Juice or a small C tablet.
As far as your insurance coverage on any medication……many pharmaceutical companies have a PAP (prescription assistance program). I have had a
fifteen thousand dollar a year medication for years and it is completely free and mailed to my home. If you run across a medication that you can’t afford just look it up online and see if they have a program. I am a one person household and was amazed that 76,000 annual or less qualified me.
If there is anything else you would like to ask, please feel free. I would like to tell you not to despair but I know the down and out feelings can visit you
but don’t make them feel welcome. You absolutely have to be optimistic. You sound young enough that we might find a cure.
Thanks for the information! While confined to the house, at my worst, a few months ago, I read that there is a lot of clinical evidence that a plant based diet can reduce a lot of the symptoms of ulcerative colitis and Crohns. I had nothing to lose… The GI doc told me the colitis was "fulminant" and suggested that I contact a colorectal surgeon, which we did. So for the past 10 weeks, I have had the three loading doses of Entyvio, tapered off the prednisone, and followed a strict plant based diet. There has been tremendous improvement, so I am optimistic, and I am eating more than I have eaten in the past year. It's amazing how much you can eat and not consume any animal products! I do miss my ice-cream but other than that, it's ok; I'm getting very creative in the kitchen, and there are some great sites for vegan recipes. I have stopped losing weight; I am maintaining 102 pounds. The labs next week will determine if I am in "clinical remission" but like you, I prefer more natural ways of treatment. Of course, it was so bad, I had no choice with the Entyvio. Out of all the biologics, it has the highest safety profile, but of course, I am still worried!! I am hoping to be among those that need the infusions every 8 weeks and not every 4, and I am also hoping that eventually I won't need them at all!!! It's too early to be that optimistic, and I dread the despair and darkness we experience with each flare. With me, the flares became worse each time and harder to manage. You're taking Pentasa and the mesalamine worked for me too, until it caused pancreatitis. The flare after that was the worst one yet, and I dread another colonoscopy. I think annually is more than enough and I will insist, if the inflammation markers show improvement, that we leave it at that! No need to disrupt everything again…. Thanks again for the information and for the kind words. One thing I have learned is that we know our bodies (at 62, I KNOW how I feel) and we have to be our own advocates! I am not afraid to ask questions and my 41 year old doctor listens and respects the fact that I know my own body. He also encourages natural things that work! This is a horrible disease and I hope and pray that all of us afflicted can get symptom relief and ultimately, clinical remission, for life! Be well, Donna 🙂
Your attitude is the one I referred to. It’s mind/body connection. My doctors only push for a colonoscopy every two years but the last one almost killed me with the aftermath. Two and a half years housebound and trying different medicines. Prednisone always works for me but, of course, it is a double edged sword. Good luck to you my friend and fellow traveler.
I know how hard it is to be housebound and I resisted the biologics for a long time, until I was just so disgusted with my quality of life, I felt I had nothing to lose. I had been on every medication out there for UC and the flares just kept getting worse!! IF you consider a biologic, please feel free to ask me about Entyvio. I was absolutely terrified of it, but honestly, so far, so good! And you are monitored closely. I wish you the very best of luck and a good quality of life no matter what you decide. You’ve suffered for way too long! 😥🙏
Thank you but I have to listen to my body and it said no to the biologics But thank you for your offer and the one thing I can say for certain about the disorder is that not even TWO people have the exact same experience. That’s actually encouraging. The best to you and me too.
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