Natalie with some fall colors!
Meet Natalie:
Hi – I was diagnosed with UC when I was 22 years old, I had years of an up and down battle with remission that wasn’t unbearable to live with. I am now 28 and it has snuck up on me at it’s worst. I work full time, just recently engaged, and love to spend quality time with friends…especially over drinks or coffee! Something that I’ve had to stop recently. I has come to a point of confusion and defeat. I’ve followed the IhaveUC website, never posted, but have read through mostly everything as well as Adam’s book. Hoping to find some sense of peace from any and all of the advice you can share!
More details:
I live in Detroit, MI and work for a non profit organization teaching recycling education. I love my job! I also enjoy being active, I play soccer once a week and I was training for my first half marathon this year, which didn’t get to happen due to my UC. I try to work out as much as I can, but have recently lost so much weight that I’m scared to work out and risk losing more.
Symptoms:
I just recently had a colonoscopy where the result was Pancolitis – inflammation of the entire colon. I had been bleeding most of the year, something not uncommon but would normally stop. It hadn’t stopped.
I am on the GAPS Introduction Diet and am still bleeding with diarrhea. I have lost an excessive amount of weight. Almost 30 days in the Intro and stomach pain and bleeding is getting worse.
Natalie’s Story:
A friend of mine heard about what I had been going through and knew a few people to do the GAPS Diet with success. He agreed to cook me my meat stocks and bone broth, which I gladly accepted! I started the GAPS Introduction Diet on October 12th and am now on day 27 with little improvement and have not been able to get past Stage 3. Just this past weekend alone I had severe bleeding. I had been doing ok with little bleeding and very little urgency throughout the first few weeks of GAPS, so now I’m even more lost and concerned about whether this is working or if I am making things worse. I also know you are not supposed to be on Stage 1 and 2 for very long. I eat meat stock soup with carrots and onions cooked for an hour with ghee and broth. I also have grass fed eggs with ghee and that’s it! I drink kefir milk in the morning, occasionally have yogurt and add fermented juices to my broths. I even drink the broth throughout the day. I’ve l ost 20 pounds and I feel terrible about myself. Were there any specific things you may have adjusted to the diet that helped you get your symptoms under control?
My GI prescribed me to take 20 MG Prednisone twice a day, something I said I would never do again, and Lialda after my colonoscopy. Both of which don’t seem to be working. He also recommended I do Entivyio, despite not having tried Anti-TNF’s prior. Has anyone else done that before? I feel like I am doctoring myself because my GI asks me what I want to do.
I really wanted to try and get through this the natural way, but am feeling pretty desperate at the moment but am scared about starting Remicade. I’ve come this far with the GAPS Diet that I feel it will be a shame to give up on it so quickly. But I don’t know how to manage my symptoms. I feel like I might be doing something wrong, but can’t quite determine what. I haven’t cheated and I’m trying to move slowly, I just can’t get the bleeding to stop. Has anyone had a similar experience with the GAPS diet not working because your UC was just too severe? I even started doing yoga, applying doTerra Pepperment Oil to my stomach, drinking ginger root water, scheduled a few massages and acupuncture, and take the GAPS recommended epsom salt and baking soda baths. I feel like there isn’t much else I can try at this point. I spend all day thinking about this disease and how it has so negatively affected my life in the last few months and countless hours resea rching remedies and things I can do to fix it. I feel like for me, there is nothing left to do but attempt Remicade.
Natalie’s Medications/ Supplements / Treatment
I started off with Asacol – which I never felt worked for me.
Canasa suppositories.
Rowasa Enema’s which did work but are not covered by my insurance.
Prednisone and gained a lot of weight a few years ago.
Lialda – I feel like it’s the same as Asacol and isn’t doing very much.
I am currently on Prednisone and Lialda.
SUPPLEMENTS: After reading many posts about how other people cured their UC with supplements and diet I purchased Vitamin D3 5000IU, Aloe Gel, Chlorophyll, Bromelain, Calcium, Probiotics, Turmeric, Ginger, and Fish Oil. I’m not trying to overdo it, does anyone have any advice about establishing a successful supplement regimen? I tried the Aloe and Chlorophyll this weekend and bleed more than I had a few days prior, so I decided to stop doing that until I managed my symptoms. I’ve now only been taking the Probiotics and Vitamin D3 along with my meds.
Can anyone with Pancolitis share with me what kind of timeline it took for you to get your symptoms under control? I don’t want to be impatient, but I feel very desperate and unhealthy with how much weight I have lost. Any advice and guidance is much appreciated!
written by Natalie
submitted in the colitis venting area
I live in Detroit, MI and work for a non profit organization teaching recycling education. I love my job! I also enjoy being active, I play soccer once a week and I was training for my first half marathon this year, which didn’t get to happen due to my UC.
Natalie, I to had pan colitis, it is not something to take lightly you can seriously and permanently injure your colon. I was basically prescribed the same meds as you were in the beginning. I ended up in the hospital twice in the time it took for the meds to start working. At this point I am off the prednisone and am only taking imuran and Lialda as well as a multivitamin, b12 complex, vitamin d3 and a probiotic with management of my symptoms at this time. If the meds are not working and you feel you are getting worse rather than better I would sincerely suggest you go back in and see your doctor and if you feel like your doctor is not doing a good job it is totally okay to see a different doctor.
I really hope you find a regiment that works for you.
Thanks, Nicolle! Being on the prednisone and doing the diet I think is starting to help since I wrote this post. My Primary Care doctor also explained that it’s too serious to not do Remicade if it wasn’t getting any better. I’m finally seeing something work, so I’m going to stick this out! I’m not bleeding and I’m finally having normal stools. Fingers crossed it stays this way. Thank you for the support!
Hi, my name is Naomi. I am 37, live in Somerset, UK, work 3.5 days a week and have a 3 and 4 year old. I was diagnosed with proctitis when I was 32.
I often read information on this site but have never posted. About a 20 months ago I was submitted to hospital with Pan colitis. I was within a day of having my bowl surgically removed. It was only after 3 weeks in hospital and high strength Prednisone, Asacol, Cyclosporine and then azathioprine (which I have tolerated well and am still on now) that I retained my large bowl and got better. I am not out of the woods but am medicated and have controlled symptoms. My consultant was and is fantastic.
I guess the reason for replying to your post is that I have found that I am intolerant to gluten (all grains), dairy (I drink almond milk) and some other odd things (green pepper, leeks, cumin for example). All these items make my symptoms worse.
We are all very different and my pan colitis would never have been halted without the right meds but living now diary and grain free helps my symptoms greatly.
Just a thought and I wish you well
Naomi x
I hope to one day also just find out those few food groups that trigger my symptoms. Right now on GAPS I’ve had to eliminate so much that I can’t imagine being on the diet for a year like it recommends. Thanks for the well wishes!
Hi Natalie, I’m sorry to hear about your struggles with UC. I was diagnosed in March (age 32) with pancolitis as well. During my worst flare I was going to the bathroom, blood and mucus, 15-20x per day. I was fortunate enough to find the right GI specialist who diagnosed me before I suffered for too long. Similar to you, I was prescribed 40mg of prednisone to get my flare under control, along with Lialda 4.8 mg to hopefully maintain remission. The prednisone worked great for me, but soon after tapering off I flared back up even on the Lialda. A couple of more rounds with prednisone and it became apparent that I was dependent on it to control my flare.
So my doctor told me that I needed an anti-TNF medication on top of my Lialda to take control over my disease. After researching all of my options, including trying to control the UC without pharmaceuticals, I decided to move forward with my doctor’s recommendation. This was an individual choice for me, but I am in nursing school and truly needed a quick resolution to continue. My doctor suggested Cimzia, but is is not FDA-approved for the treatment of UC yet so my insurance wouldn’t cover it. So I started Humira back in July and I feel amazing! I administer a subcutaneous injection of 40mg every other week. My doc wants me taking the Lialda as well because of the protective measures directly on the lining of the GI. At this point, I can eat whatever I want, although I tend to choose nutritious foods over processed or inflammatory foods. I also continue to take prenatal vitamins, a probiotic supplement, and I add a lot of turmeric to my green smoothies in the morning. I have normal BMs and feel good overall. The only side effects I have had are increased migraines (which I have been living with since age 5), a reaction at the injection site that last a couple of days, my eczema tends to flare up a bit more, and my scalp is itchy and my hair is falling out some (not to the point of having bald spots or anything). I should add that Humira is not the most fun treatment. I started off with the auto-injector pens, which I suppose for people afraid of needles would be the way to go, but found them to be anxiety-inducing and extremely painful (most likely due to the osmolality of the solution and the rate of injection). I switched to pre-filled syringes and have found they are much better for me because I can control the rate of injection and therefore control the pain. It was hard to get over the psychological factor of watching myself stick a needle in my thigh, but I worked through it and I’m glad I did.
During a flare, I maintained a low-residue diet, but otherwise ate a healthy, well-rounded diet, avoiding extra spicy foods and alcohol. I did extensive research on the different approaches to diet in relation to UC, and I realized that UC is an extremely individual disease. Therefore, my approach was to eat how I normally did (which many consider to be a healthy, well-rounded diet) and see what happened. I knew I could always cut things out if that didn’t work. I also try to manage my stress level through massages, acupuncture, and I make sure to get good sleep. This is what is currently working for me. Time will tell if it will sustain, but I am hopeful. I realize there are other therapies I can try if this doesn’t work long term. You will need to decide if considering biologic therapy is right for you. I just tell my story to let you know that despite some of the horrible stories that have occurred for others who tried an anti-TNF, for me it has been a lifesaver! I hope you find a solution that works. I am happy to discuss anything with you further… having a community like this to bounce ideas around and gain support is so beneficial.
-Yvonne
Thank you for sharing your story, Yvonne. That does make me more hopeful that if I needed it, it really could work for me! In the last week I’ve been able to get the bleeding to stop and am continuing to take lots of supplements and move through the stages of the GAPS diet. I hope I can maintain this until I’m able to get my body into remission. The support really is so beneficial! It’s nice to know you are not alone out there suffering from something that is so awful.
Natalie
what a horrendous time you are going through. I have information i could share with you about FMT if you want to know about it. I had left sided colitis and it was categorised as extreme. I endured tbe blood loss you are tslking about and also tried the dietry plan you are doing. Hhis generally made mecworse with more bleeding and intense joint pain. I cant promise FMT will work for you but it has worked for lots of people.you are at the required stage to try it i reckon just fed up and willing to try anything if you want more info email me at jaygee1632@hotmail.com.
I did an FMT clinical trial in 2014 got remission with no sign of disease for 11 months then started to get loose stool and blood early 2015 so did FMT at home have been in remission since. Its free and does not cause cancer..
I manage mine with diet and supplements A really great help for me was the book= The Autoimmune
Solution. By Amy Myers. She gives great info on supplements to take and what to do to help. Hope you find relief soon. It’s sucks being in a flare and feeling like nothing is gonna work. Stay strong and don’t give up hope.
Thank you, Denise! I am purchasing the book now. I’ve been really trying to figure out a supplement regimen that works for me. :-)
I’ve been in a flare since 9/1/2015, which started just 2 months after I got off an 18 month long period of prednisone. I tried Remicade, but I had issues, fevers and odd infections with it. I decided that before I try Entyvio, I needed to make sure I have given everything else a shot. Meds in general scare me. I was on Uceris pills and then started taking Lialda in hopes that it would help my flare. It seemed to do nothing. In addition to my UC, I have had horrible tenesmus since July and it was really affecting my quality of life. I do still try to enjoy life even with UC. Anyway, I talked to my Dr about the tenesmus and she changed me to Uceris rectal foam. It has been life changing. This is the closest I have been to remission in 15 months. I was at roughly 15 BMs a day and now have had days with as few as 4. I am going to continue on it as we are over our out-of-pocket max and I am covered for now. Long and round about way of saying that sometimes just a change in how a med goes in (ewww) might make a huge difference. I am not consumed with potty thoughts all day long and can even jog again a little here and there without instigating BMs. Anyway, good luck to you and hope you can find something that works for you.
Hi Natalie, I’m so sorry for what you are experiencing now with this horrible disease. I can say that it felt like you were writing my story. I have tried it all Western, Eastern and all of the above when it comes to therapies and treatments. I now after 6 months have weaned down from 40 MG to 5 MG. I have completed my second infusion of Remicaid. I too was very concerned but knew I already had no quality of life. It is definitely a personal journey and the decision only you can make. I can tell you I have no bleeding and I’m not spending my day in the bathroom. I am with my friends and family. I also know that there will be new medications in the near future. I feel if this can make me better until that time I choose to try this and get into remission. It also doesn’t mean it is a forever choice. I wish you strength in making the decision that is right for you. Take care!
Starting tomorrow on Tom O’Brien’s site there is a once a day for 7-days discussion of autoimmune diseases and curing them. Don’t know if it will help any or all of us, but it’s free to watch.
info@betrayalseries.com
For a preview:
https://betrayalseries.com/sneak-peek-7p6wvsau.
Was the prednisone Budesonide (Uceris)? That one concentrates in the gut; so about 90% of it stays there, thank goodness. That’s what the g.i. doctor Rx-ed for me two years ago for two months when I got the pan-c news. It cleared up the flare but not the gut, which took ages. I take Lialda, too. Up to 4 a day again.
I read last night in an SCD recipe book that carbs from all grains eat up our mucosal linings, especially when we are already experiencing colitis activity. Written by an ND, she swears by the GAPS diet. I had pancolitis two years ago, that went to an absolute clear, nothing showing up, even microscopically last year, but now battling a mild flare again. So frustrating. I have started on the drinkable (enteric) diet from Jini Patel’s site, Listen to Your Gut (LTYG). It’s a powder you mix with water. Each one has 350 calories. I’m drinking 3-4 a day. Not cheap, but I don’t know what else to try at this point. It’s about $6 per serving. So far showing improvement today 4th day. I’m drinking bone broth and taking VSL#3 2x day, as well. Keep us posted. It’s a rotten disease and it’s not fair!!!! But, we do what we can, right? Thank you, Adam, for this site. It helps.
I am currently in a flare also. I was diagnosed 6 years ago with UC, diverticulitis and polyps. I have been on so many medications I don’t remember what they all were. The last one was 6mp which just made me worse and I had so many side effects it wasn’t worth it. That was 3 years ago. I have been blessed to have had a 3 year remission. Just recently I was hospitalized for a week where I received 2 blood transfusions, heavy antibiotics, ant acid, steroids, nutrition therapy and heavy pain killers. My husband checked me out of the hospita to take me to Idaho where they now do stem cells. It was such an amazing experience, although I am not better, I am a lot better than I was. They told me to take cayenne pepper for the bleeding and it worked! They also have me on a really high dose of krill oils 2500 MG in the morning and 2500 mg at night. It’s supposed to take down the inflammation and I can tell it helps. Also I was diagnosed with Lymes disease at this health clinic. Something for you to look into. Sending prayers for you and that you can find some relief (I have noticed diet helps but is not the answer ) stress is my worst enemy. Just a few thoughts.
Thanks for sharing, Megan! How much cayenne pepper do you take and do you mix it with anything?
I flared for 2 years and nothing helped. I insisted on stool test for Cdiff. Only 3d test showed positive result. While trying to deal with it I lost 30 Lb. Lost a lot of blood and was hospitalized. Horrible experience.
I contacted Dr. Borordy in Australia who suggested to start long term antibiotics: Rifaxamen, and Metranidozole. I was bleeding at that time and had 14 BMs per day.
Slowly I started to heal. In 6 month I had 4 BMs and less urgency. Today, 2 years latter, while still on antibiotics, I have 2-3 BMs per day , no urgency.
Please research MAP infection in UC and Chrons.
good luck
I was diagnosed at 30 with proctitis. I’m 35 now. I tried Canasa, Asacol, Rowasa, 6mp and more but was actually allergic to all those medications and it made me worse. After 2 years of bleeding, urgency, pain and a week hospitalization I was finally put on remicade. Remicade gave me relief but it took awhile to figure out correct dosing before I was in remission. After 3 years on remicade I can no longer take it. I built up anti bodies against it. I recently started entyvio which for me has been a life saver. If your going to start any biologic, I suggest you do entyvio first. It targets the gut/colon and is specifically for uc patients. It is working better than remicade has every did for me and the infusion only takes 30 mins compared to 2 hours with remicade. I pray you find something to help you feel better and get you in remission. Some people would say do the natural way but sometimes you need a little medical help in order to get you there. Once you are in remission you can continue eating healthy to help keep you there. Good Luck!
Thanks, Vashti! I haven’t heard too many people talk about Entyvio. My doctor seemed very interested in having me try it first until I suggested trying the Anti-TNF’s before. My symptoms have finally gone away, probably from the Prednisone, and I’m continuing GAPS. Once I wean off and if things go back to how they were I will consider that as my option.
I’m commenting regarding your question about trying Entyvio.
I have had UC for 20 years now. Diagnosed at age 21 and I’m now 41. The first 18 years was proctitis and was well controlled with Canasa. I’d see a little blood and start on Canasa and within days the blood disappeared. I never had any other symptoms and I’d go 6 to 8 years with no bleeding and no Canasa. September 2014 I started seeing some blood again and started Canasa. This time it wouldn’t stop the bleeding. In October 2014 I had a colonoscopy and it showed 5 cm of inflammation. Within one week of the colonoscopy the proctitis exploded. I started having urgency, passing large amounts of mucous and more blood than I’d ever seen before. I became anemic pretty quickly due to the loss of blood. Over the ensuing months I tried Lialda, VSL #3, L Glutamine, Uceris and of course, prednisone. Prednisone was the only drug to give me any relief. July 2015 I had a flex sig and it showed moderate to severe inflammation all the way up to 55 cm. I went on another course of prednisone, kept taking Lialda, Canasa and added Rowasa enemas. This treatment plan kept things somewhat at bay, but any improvement was short lived once I stopped the prednisione. January of 2016 I decided to give Low Dose Naltrexone (LDN) and Curcumin a try. I started out pretty good with it, but after 6 weeks I started having severe arthritis and exhaustion and the UC symptons were still there. This was the first time I contemplated Entyvio because I liked the GI focus of the drug, vs the other biologic treatment options. The other drug I was thinking about was Imuran. My physician has been very flexible with my treatment plan, pretty much listening to me and letting me try different things. He was against the LDN (my family doctor prescribed it for me), but was ok with me trying Imuran, with Entyvio being the next step if Imuran didn’t work. I started Imuran April 23, 2016 and I started seeing some improvement. Unfortunately, on May 9, 2016 I woke up with Pancreatitis and I had to stop Imuran. Enytvio was my next step. I was approved very quickly and I had my first infusion May 19th and my second June 1st. I started seeing improvement immediately. I had my 5th infusion October 20th and today I can say that I’m back to 100%. It took the full 6 months to get me here, but it does work and the only side effect I’ve had is mild itching after taking a shower. I added 1 Claritin daily and the itching has stopped. I now get the Enytvio infusions every 8 weeks and it is a very simple process.
I say all this to let you know that you need to experiment and see how your body reacts to any supplements or medications you try. It sounds like your GI is similar to mine and will work with you on trying different medications. I was scared of starting Entyvio, but right now I’m so thankful for it because after 2 years of up and down I have my life back. The other advice I have is maintain a positive attitude. Despite having UC, you can still enjoy life. Through all of this I have not missed work and I remain very active. I had lost 15 pounds, but since the Entyvio took control of the disease I’ve gained 10 pounds back and I feel great. I wish you the best of luck.
This is great information! Thank you for sharing. I needed to hear a lot of that. The positive attitude was something I was struggling with as I wrote the original post, and since my symptoms are going away, thanks to GAPS and Prednisone, It’s easier to have that attitude back. I’ve been staying in for the last month, not going out and at first that didn’t make the process any easier. Now I can say I’m getting comfortable with the lifestyle changes I have made and I hope that once I start to taper off Prednisone, there will be no need for me to resort to Entyvio or the other options just yet! Fingers crossed! But if I do, it’s good to hear positive things about Entyvio.
Hi Natalie, I am 42 yrs old, diagnosed 8 yrs ago, and I am now on 4 Lialda, 4 Imuran, probiotics, and levsin as needed.
At one point I felt like the meds were not working. I tried Remicade and my body rejected it by getting Toxic Megacolon, a very dangerous condition, could not eat, had to get a white mix called nutrition via IV. In Extreme pain. I had to alternate Percocet and Morphin. Hospitalized with IV meds like cyclosporin, steroids, etc.
I started smoking 5 cigarettes per day, no more and no less, recommended by a GI Dr. and it was like a miracle…the meds started working!!!
I echo the sympathy. There is nothing glamorous about UC! I have struggled with symptoms for years, but was diagnosed 2 years ago while pregnant. (There is nothing quite as uncomfortable as an un-sedated diagnostic procedure =))
Lialda got me through the rest of the pregnancy, but after a few months and some problems with blood clots, I ended up on Prednisone. I couldn’t get off. Each time I would get down to the 15mg range I would slide way back, and it would take higher doses to get things back into a doable zone. I played that game for a year. Eventually I started Humera. It didn’t really help. Of course, all along trying different recommended diet changes and herbal supplements, naturpathic doctors etc… $$$…but would just feel worse. So while still on Prednisone, I tried my own diet! I ate white rice and lamb bone broth for one week. Nothing else, not even supplements or herbs. And then began adding ONE thing at a time. To my surprise many of the recommended anti-inflammatory foods were not my friends: Turmeric, slippery elm, eggs, tree nuts (coconut was a big one), peanuts, avacado, and lentils. I was able to get off Prednisone within a couple of weeks and and stopped the Humira. As much as i hated the side effect of the pred. I dont think i would have been able to get to this point without it. It is hard to detect subtle changes when your body is RAGING! I still get a bit uncomfortable when I eat processed food, palm oil maybe?! Good luck. I wish you the best. We are all different, listen to your body.