Newly (a few months now, I guess not that new) diagnosed with moderate UC, which began in July 2022 with blood on TP, misdiagnosis for a few months, 5 doctors and finally a colonoscopy. I was told blunty “you have a lifelong disease with no cure and we’re going to start you on IV or self injection treatments. Still stuck on the first part of what I was told, I immediately said NO, HARD NO to the treatment being offered, I had no information about UC, it was a shock to my system and I need time to not only absorb this news, but to research. I started with steroids, a circus in itself, it didn’t fully put me in remission (at this point, after the colonoscopy I was in a flareup big and bad), I still had traces of a flareup left. Reading about the only medications offered, the common side effects, possible side effects and possible severe side effects I immediately said NO. I went GF, went into remission, got some bad news about my dad, straight into a serious flareup, currently no idea what to do, only that the meds are dangerous & don’t work.
Current Symptoms:
A great deal of bleeding, mucus (have trouble with that word since childhood, makes me heave, but you asked lol), have had off and on moderate cramping, a general feeling of unwell iwith regard to dealing with those symptoms, including unformed stool, and a few other things going on.
My UC Story So Far:
Has anyone found a medication that isn’t poison? What I mean by poison is that every single medication I’ve been told about or researched on my own comes along with a ridiculous list of common side effects, possible side effects and possible severe side effects. I find all of them unsafe or damage causing in one way or the other, so thus far I’m refusing them all after a 3 month stint of hydrocortisone enema that I refer to as the months of Hell. I find it so very hard to believe that in the year 2023 there’s not one medication that doesn’t possibly cause other conditions or other organ damage and/or that doesn’t fully and permanently keep you in remission. Does anyone, or has anyone, come across anything that isn’t along the lines of what I consider to be poison?
I went 100% gluten free, which put me into immediate remission, as in overnight, but then received incredibly traumatic news about my father and near immediately went into a flare, the flare I’m in right now as described in my symptoms above. Now my symptoms, as I’m feeling great stress and worry for my father is far worse than it was initially. I just began a Turmeric/Curcumin capsule 2x a day and am looking into a holistic oil made with indigenous mushrooms and more. I truly, in my essence, my being, find a comfort zone for any of the countless medications being offered to help this condition. What drew me to site, well to the bleeding thread, is that after so much research I was doing, I had finally found a page that said UC & Bleeding, that made me feel like I wasn’t alone. Even the Chrones & IBD Foundation, filled with absolute lovely people, did nothing but cause me stress, hearing about so many negative experiences, many of which my doctor would like me to try (I’m not).
I’m genuinely interested in connecting to others like me, who believe there has to be a better way, there has to be a way period.
Medication and Other Types of Experiences so far:
Prednisone 30mg 3x a day and then tapering for 3 weeks took care of my initial/first flareup but for one symptom that wouldn’t go away. It gave me severe insomnia and of course weight gain and moon face, but outside of that I was giggling through it all. Then I went on a 90 day hydrocortisone enema that I’ve dubbed “The Monster.” That gave me the worst systemic pain I’d ever felt, my headache and neck pain and tension was intolerable, I developed infections I’d never had before that were difficult to treat after trying multiple antibiotics that just gave me additional symptoms. So now on my 2nd flareup of my life I’m at a bit of a loss. I know I can’t go untreated, I know what could happen, the little worse and the severe & deadly, but I can’t bring myself to take any of the medications used for UC, they don’t feel safe to me, and… why use something that cannot guarantee remission long-term?
written by: Kimba
submitted in the colitis venting area
| I’m the modern day version of a tree hugger. I’m one with nature and have a very strong bond and protective nature toward all things nature, wild life, domestic animals, our planet. I don’t follow one specific religion whatsoever, but do greatly regard and respect those who do, but rather have had an innate knowing (for lack of a better term) with regard to my perception and belief system of who we are, why we’re here, where we are (Earth), etc. Music is a strong connection to my emotions, my joy and my peace (very eclectic music taste), and wildlife, including the insect world, my friends the dragonflies and butterflies follow me like old chums are truly a part of who I am. There’s more to me than this, but that’s a starter. :-) |
This disease is no fun. I was diagnosed 42 years ago. I do take meds to stay in remission. I started with sulfasalizin and when that stopped working went on asacol and then lialda which I have to take the brand name because they changed the generic and it didn’t work for me anymore. I eat paleo and that was a game changer for me. No side effects from meds. Hope that helps.
Thank you Lori and sending you blessings.
I started out with my first colonoscopy at about age 57. Never a symptom of UC at all until I had the colonoscopy. Had no clue what to expect, how it was treated or anything. No referrals to any Dr’s. The bleeding after the colonoscopy got worse over time, I finally got a Dr. Of which I’m not happy with. He offered no advice or help other than he did say I should take mesalamine suppositories and mesalamine pills. 4 horse pills per day. I only took the pills for a couple days, thought it was overkill so used one suppository per night. It works like a charm. Have been on those for about a year, finally had another colonoscopy about 10 years later to find no sign at all of colitis. I was told I could stop the suppositories. No more meds! Whoohooo! It lasted one month before I started bleeding again. Not bad but it’s definitely there. I’m mostly on fruit. I juice and eat all the fruit I want. I stay away from caffeine, deep fried foods, most sweets, and red meat. I will have grilled chicken occasionally. I can eat a small salad once in a while but not on a regular basis. I was broken hearted that with a clear colonoscopy why I would start bleeding so soon. I’m not 100% fruitarian, but I’m sure if I was I would have a better chance of staying in remission. Juicing and drinking juice gives my colon a chance to heal without food in it. There’s no digestion needed with healthy fresh juice. Colon gets a good rest plus nutrients get absorbed, unlike food that passes through almost as soon as you eat. Exercise is a big help too. I walk 1.33 miles whenever I can. I especially love walking when it’s cold. It’s now too hot to walk, 100 and above I won’t do. I refuse those nasty meds as well. I prefer diet as much as possible. If gluten free diet worked for you the first time, I’d do it again. I can totally understand the stress. I retired from my job and that helped a lot with stress. So sorry for the loss of your father. I’d try again with the gluten free diet and see how it works for you. I might try it as well. Good luck to you. I hope you find something that’ll help.
I do the SCD strictly and no blood usually. If I take in sugar or too much fruit I get blood…just a bit. I feel it is from sugar. I ease up on it but with a craving here and there…then blood.
So my feeling is keep wheat, all grains if possible, sugar, and sugar substitutes away from your mouth. Sugar is a problem for sure. Our bodies turn wheat to sugar and all grains. rice!
Just check to see if the blood goes when the fruit and sugar go. Eat fruit before eating artificial sugars.
Hi Cathy,
Thank you so, so much for all of your responses, it doesn’t seem as though anyone other than you and I are visiting or receiving notifications from this sight, though I did see that the ihaveuc youtube channel is seeing more current activity. I did “finally” lol find your ebook, bless your heart for sharing it with everyone and anyone. I’m not quite sure how I feel about the implants, though it’s a zero judgment zone with me, and not just on this, but all things in life (other than abuse, greed and abuse of power – those are hard no’s for me). It’s not something (in this moment at least) that I think I would feel comfortable with, definitely not without it being a family member, and I don’t have a family member that isn’t ill themselves. But thank you for sharing what you so strongly believe in and what’s helped you a great deal.
Re: No sugar and no artificial sweeteners, that’s where I’m absolutely stuck (baffled and befuddled). If you need to stay away from sugar (which I do for other reasons as well) and you need to stay away from artificial sweeteners, what do you do? Generally speaking, nearly all things w/out sugar or sugar free has artificial sweeteners. I haven’t been able to figure this one out at all. I’m even having the darndest time trying to find electrolyte drinks, my favorite, and just realized today (didn’t even think of it before today) that the Gatorade Zero I’ve been drinking, because I need the electrolytes due to “a symptom,” and was drinking Gatorade Zero, because I need to lower my sugar intake, then it hit me like a rock in the head today that wait… it’s zero sugar, does it have artificial sweeteners? Sure enough it does, and I’ve been downing a 28oz bottle a day for months on end. So what in the world do I, do we, do when we need the electrolytes, can’t do sugar, but also can’t do artificial sweeteners? This is mind boggling to me.
Unfortunately, I’m not a big cook. I’ve been cooking far more since diagnosed than I have in 10 years – now divorced 20 years and over the past years it’s been more of a just throw it in the microwave type of thing, or ready made. I intelligently know, and through my research, that I can’t eat that way anymore, but I’m also not a cook-cook, I find no enjoyment at all in cooking, I don’t own dices, slicers, choppers, fryers, nothing – and I’m on disability and can’t afford to start buying those things, or more foods, I can’t barely afford fruit or vegetables with the cost of inflation for those things, and I’m eating gluten free, which is double, sometimes triple the cost of food. These are the areas I’m getting stuck in, and my Gastro, whom I adore and is very kind, doesn’t answer these questions for me at all. I live in Central FL, trust me when I say that I can’t find a better Gastro or PCP – I’m on a Medicare advantage plan and I’m blessed to have the amazing other specialists I have for other medical conditions – but in the Gastro world, they would all say the same thing “take this monster medication that may or may not cause you other health conditions or other organ problems,” which I refuse to do.
Cathy I’m at a loss.
Again, thank you, bless your heart – I mean that, for being in touch with me. Huge forums overwhelm me, because I find them to be overflowing with horror stories about medications, more so than the good stories, so I’m so grateful for you and this thread. Thank you sweetheart, sending you HUGE hugs.
Enormous Gratitude,
Kimberly
Reach out to me any time.
I know it all seems overwhelming. It did to me also. My life was a mess. As you could feel from my book I was so nervous to do the implant. If it were not for me being almost dead and 87 lbs. I would not either. I thought I was going to die so it was better than the alternative. My cousin who is so close to me said she would rather die than do one. When you see no way out of sickness you try anything. I’ve heard of people advertising in health magazines for a doner. My Naturopath told me some go to Europe where it is legal and get them in hospital at a cost of ten thousand plus airfare. That is crazy you can whip it up in a blender…just for this lab work only…so complicated to go outside your home, for a very simple process you can do at home and master it in no time. It’s really easy.
Try eating a banana in the morning with almond butter for dipping. Sometimes I eat pears they are very healing with peanut butter or almond butter. I prefer peanut but almond is a better choice.
No toast ever. soft boiled 4 minute eggs are not runny and are good for breakfast too. I eat a lot of meat at dinner..not big portions just often and with just a nice big vegetable salad. No carbs, no rice, no potatoes. You can have any vegetable except parsnips and white potatoes.
If you have a sweet tooth eat the banana or some grapes with yogurt or peanut butter.
So that is a start. Reach out anytime.
I can coach you with it if you decide. My husband was the doner.
One guy told me he lived in an apartment building and was single. So he saw this healthy runner who lived in the building and asked him to come over to his place for a conversation. He wordedit well and the stranger said yes he watched what he ate, ran everyday, drank lots of water etc. so he said sure I’ll do it for you. So every morning he would call to say it was ready in a plastic container and this guy would go pick it up. If you are suffering so much you have no life you may do it as I did.
As far as sugar substitutes go, anything ending in “ose’ dextrose, fructose even glucose (except naturally occurring in fruit) not too much fruit while bleeding. Stevia is a substitute which is from a plant and is fine. Just take it easy as it is very sweet. You can buy drops in the health food store.
CATHYYYYYYYYYYYY,
I just wrote you such a long response and the internet ate my comment! Ugh, I can’t reproduce it right now, have to get up out of bed and get moving (a little). I’m so sorry. It was a wonderful response, filled with love, gratitude and a few questions. Ugh, as soon as I clicked post comment I went to an error page and I didn’t save the darn post first. Please know that I did respond, and that it was filled with love and so much more. ((((((hugs))))))).
Kimba
Same as the other lori azulfadene and then asacol. Gluten free as also celiac. Forget the new biologics and colonoscopies set me back 10 years so hopefully all will kick in soon and better days for you are coming
I appreciate your thankfulness. I have had the disappearing email thing way too often. Cathy