Intro: I was diagnosed officially in January 2013 with severe pancolitis, although I have had lifelong tummy issues. I want to treat myself with diet and natural methods ultimately!
Some more about me: I love being active! High intensity interval training, all kinds of yoga (although lately restorative is my fave), dance, long walks…I’m up for all of it. I love to eat and have been fully Paleo for nearly a year. My hubby and I are very laid back and have a house full of rescue animals. I wouldn’t have it any other way.
Symptoms: I’m technically in remission! What a relief indeed. But I still have mucus pretty much daily, and I will bleed if I get near a nightshade. Or chocolate. Boo!
But coming from where I came from earlier this year (20+ bms (D!) a day, anemia, fevers, aches and pains, hemorrhoids, no appetite, vomiting, heavy bleeding, tenesmus, 20 lb weight loss in 3 weeks), this is no big deal. I will take it. GLADLY. One day at a time is my motto, for sure!
Transitioning from Paleo to SCD!
So, long story short. I was diagnosed in January of this year with severe pancolitis. I was extremely bad shape – anemic, losing my hair, fatigue, joint pain, fevers, 140+ heart rate, all the good stuff. Definitely no fun- I couldn’t get off of the couch!
I went on a heavy regimen of Prednisone (40 mg taper), plus Flagyl and Cipro. During that time, I saw a naturopath and also an acupuncturist – they diagnosed me with Leaky Gut, which made a lot of sense to me. I had always had a touchy stomach, so that all added up when I considered my symptoms and perceived food sensitivities. All grains, tomatoes, white potatoes, peppers – these things are not my friends. I had been Paleo before and continued to follow this diet – just with no cheating. I have been taking several supplements in addition to my VSL DS (which has been great for me) and Apriso (not sure how much that does for me, but I am covering my bases).
I have kept a pretty detailed food diary, and over time, although Paleo has been great for me overall, I have noticed that some of the foods that increase my symptoms (sweet potatoes, chocolate, parsnips, plantains) are not allowed on SCD. Which has me thinking that maybe it is time to incorporate some SCD into my current plan to get me to the next level. Any thoughts there are welcome – it doesn’t seem to be that tough of a transition, but I am hoping for some good results.
My periods were pretty much nothing for the past 2 years, and I assumed it was from the birth control pills I was on. I stopped taking them in February – I just didn’t want to take anything else since between meds and supplements I was taking so much. My periods are still recovering – my gyno and GI doc say it will take time. The prednisone apparently takes a lot of time to recover from hormonally. Right now I am off of the pill, but get periods about every 6 weeks. I wondered if maybe I was in an early menopause (I’m 38!) but my doctor says that it can take time to normalize. My acupuncturist is still alarmed at the changes to my system since the predisone, and says that between that and the trauma from the illness, that it may be 1-2 years before I recover. How crazy that those tiny pills (so necessary at the time) can do that!
To be honest, I don’t feel like the same person. Part of it is physical – like I’m still recovering. I get tired so easy now, and need more sleep and rest. I used to love hot yoga, power yoga, but now my favorite yoga is restorative, yin yoga. The kind where I doze off and drool on myself. I feel so much older physically. Part of it is personality wise – I am fussier. But I think a lot of that is that I am pickier now about how I spend my time because I see how precious it is. I used to be so fun spirited and much more easy going – I’m all crotchety now! I am also so choosy about WHO I spend my time with. Maybe this is Mother Nature’s way of doing some house-cleaning for me.
Immune system – It’s still funky! I get every cold and flu that gets anywhere near me. My acupuncturist says it is due to the Prednisone, and that makes sense. Anyone else have that? She has me taking herbs that help, which is good, but it scares me that I’m still having these effects nearly a year later. I am NOT interested in getting a flu shot.
Overall, I am SO grateful to be in remission. If this is as good as it gets, I am fine with that. For those of you hanging in there with active flares, stick it out and keep trying things until you figure out what works. It’s different for everyone. I truly think that the #1 thing that keeps me well is my diet and managing stress.
Medications and Supplements I’m Taking:
Apriso – not sure how much it does for me? I have a savings card for it now to where I pay only $10/month, but on my new insurance for 2014, I will pay $300/month. So it better show some value! I asked my GI doc about weaning off next year, and he said he wants to scope me first. Ugh. Maybe I will just take it.
VSL #3 DS – AWESOME! Felt a big difference in this from the other probiotics I had been taking.
Vitamin D3
L-Glutamine (not sure if this is helping me, might phase out)
Astaxanthin (not sure if this is helping me, might phase out)
Fish Oil – I feel like this is good for me.
Chinese Herbs
written by Caroline & submitted in the colitis venting area
Diagnosed with severe pancolitis in January 2013 – currently in remission (of varying degrees). I’m a 38 year old married female that loves staying active and caring for all of our rescue animals. I live in a zoo, I tell ya.
Congrats Caroline for getting yourself into remission!!! Awesome!
Can’t wait to find out how the SCD treats you in comparison to Paleo, and as you know they are very similar.
Best of luck, and cheers to some continued yoga drooling:)
-Adam
Thanks, Adam! And thank you most of all for this site. It has been a lifesaver so many times for me. Looking forward to some yogurt and definitely some more yoga drooling. If you haven’t done it before, I highly recommend it! :)
Caroline
Congrats! I also went through a period of wrapping myself in a coccoon. I think it is a good survival mechanism because your energy is precious! You really should try to be with good people, eat good food and have healthy hobbies. Self care is a huge part of my UC regimen. Sadly, I also had to give up chocolate. And It made a huge difference. I love acupuncture and think it’s getting my nervous system back in balance. I was on prednisone for 6 months and I am awaiting the return of my cycle. My ancupuncturist says to be patient but I am considering trying a week of birth control pills to give it a push. I try to follow mostly SCD but find I need some grains here and there because I always feel hungry and my blood sugar gets wonky. Best of luck!
Thanks, Allison! It is good to know that I am not crazy. I had a naturopath suggest something called “Seed Cycling” to bring the cycle back into balance, where at different times of the month you eat different seeds. I really didn’t want to get back on the pill, but eating seeds just felt nutty (haha). I figure that with time things will normalize a little more. You were on Prednisone for 6 months – wow! You are a trooper, for sure. Have a great weekend. :)
Caroline
Great news Caroline!
I just love a ‘natural’ success story…I would not stop the L-glutamine. That, along with the probiotic that I take, keeps me in remission, I’m sure. L-glutamine actually heals the mucosa of the colon, or, heals the ulcers. I think it’s a mainstay in remission.
Cheers,
Bev
Hi Bev,
I was wondering what the fermented L-Glutamine you take is called and where do you find it? Also the probiotic that you use. I’ve seen your comments on tons of posts and am really curious to give your method a shot. I take Pure Encapsulations L-Glutamine 1000 mg 2x day, but it’s not fermented to my knowledge.
Thanks for sharing your story!
Ultimate Flora Critical Care by Renewlife is the fabulous probiotic. It is a must that you take it on an empty stomach and then no eating or drinking anything other than water for at least half an hour afterwards. The l-glut amine is by North Coast Naturals and is fermented powdered unflavoured. I take it about an hour before lunch, also on an empty stomach. I mix it in a bit of juice but you can just use water of you don’t mind the taste.
Cheers
Hi Bev,
Thanks so much for your prompt response. The local health food store carries the Ultimate Flora and I am going to order the fermented L-Glutamine. I will adhere to your prescription of using these on an empty stomach and let you all know how it goes.
And to Caroline, good luck transitioning from Paleo to SCD. They are super similar, but I personally do really well with legumes when I’m in remission so these are something you can enjoy once you have been on SCD for a few months (pretty sure they are a no-no on Paleo). I keep SCD dairy free, and for almost 2.5 years was in remission just from diet. Currently having a set back, but I kind of abused nightshades this summer with my CSA and also cheated with okra. Lesson learned, SCD has to be 100%, at least for a good while…
I’m sure you will be pleased with the results!
OMG…I cannot wait to hear how you do…yes, be strict about the empty stomach, especially for the probiotic. I get up at 6am, take it with water, and then I exercise and don’t eat until about 7:30 to 8am. Most people can’t go that long without eating, and if I didn’t exercise, I probably wouldn’t be able to either! Just in case you can’t go that long…you can always get up at 3 or 4am, take it with water, and go back to bed…OR take it right before bed, as long as you haven’t eaten for a few hours prior.
Good luck!! I want this so badly to work for you, Katya…for everyone, really!! Give it some time…it can take days, weeks, even a month, but for me, it only took a few days!!
Bev
:)
Thanks, Katya! Your dog is so cute – I love any dog with little droopy jowls! We have a boxer and so I get drooled on regularly. :)
Thank you so much for your reply – I am really intrigued to see how this will all play out. Since cutting out the SCD nonos, what symptoms I did have are reducing day by day. I feel like I am on the right path and am so grateful. Hoping it will continue! I nearly joined a CSA this summer but knew the nightshade temptation would get the best of me. :) Oh, but if you were going to have a non-SCD legal veggie, okra is the one to pick! Good choice!
Best of luck to you! :)
Caroline
Oh…and the astaxanthin is really quite a powerful little anti inflammatory…I take it every day as well, and will not stop taking it.
The tendency is to try and ‘phase’ things out when we finally get ourselves into remission, HOWEVER, and that’s a big however…lol…I tried to do that a few months back, and it was a HUGE mistake. Whatever is working in regards to keeping you symptom free…DON’T CHANGE IT! Take it from me…I’ll never change anything again.
Bev
Bev,
You are always one of the ones that makes the most sense to me. Thank you for reminding me about how consistency once you find what works is important. I have placed my refills for L-Glutamine and Astaxanthin accordingly. Anything that can help manage any inflammatory response is important, for sure.
Thanks again! xo
Caroline
How sweet Caroline.
Thank you…I like to keep things simple!
:)
Ah Caroline…the curse and gifts of UC!! :-)
Sounds like you have your answers. I do most the same things as you, but mostly SCD not paleo. Also remember that UC is so individual and paleo and SCD so similar it may just need some more tweeking. There may be something else in your diet bugging you you may not realize and may have to do the elimination type trial and error. Also, I have used various Chinese herbs as my UC has changed so recheck about that.
Give yourself time…as I’ve said before, baby steps….you didn’t get there over night so give yourself some time. Those meds have forever changed my body and how it heals and reacts to everything…from years of pred to asacol to remi and humira…i call them the gifts that keep giving!
Best, Shelly
Shelly,
Thank you for your response – although I think I have my answers, this whole thing is so tricky and can change quickly! SCD and Paleo are so similar, but it seems that starchy veggies and tubers are problematic for me. It’s so funny now how quickly my body reacts to tell me if something didn’t agree with it -how on earth did I live on Taco Bell through college? Haha. :) One of these days I am going to try out some SCD yogurt – in the meantime, I am happy with my meats, veggies and fruits. At least my body keeps me on the straight and narrow. :)
Have a great day,
Caroline
Just a quick update – things are still going well with me! I had my latest checkup with my GI doc today and there were a few points I wanted to share.
1) I was nervous to tell him that I still have some bleeding – mainly if I eat something that doesn’t agree with me (coffee, cashews, chocolate – my main offenders), or become the tiniest bit constipated. He said that this is normal for many UCers – that after our colons have so much trauma from the disease, things can just be a little touchier. It can be helped by suppositories but he said there isn’t a lot of harm in a small amount of bleeding if no other symptoms are present. This might be my new normal, which makes me a little more relaxed.
2. We had discussed previously the possibility of taking me off of the Apriso, only after he had scoped me. My prior colonoscopy was done by a doctor that I did not have a good experience with, and he shared very little with me afterwards. My new doc was able to get the pathology from that first scope, and apparently I had a pre-cancerous polyp that was removed. Hmm….might have been good information for him to share with me, but only solidifies why I changed doctors. In light of the polyp and the severity of my pancolitis, he said that he would like to scope me himself to get a peek on how things are healing as well as if there is any other sort of risk to cancer that we need to be aware of. He left the decision up to me but I agreed to it – mainly because I am really curious to know how things are looking and I know he will give me a lot more information.
3. Did you know there is a pretty new colonoscopy prep? It is called Prepopik and apparently is not as harsh, as well as doesn’t require as huge of an intake of fluids. After my last experience with becoming dehydrated and super shaky, my doctor was all excited for me to try this one. I don’t know that I will share his excitement, but we’ll see how it goes! It will probably be way better just because I’m not flaring and feeling awful.
4. If you don’t have a GI specialist that takes time with you and LISTENS, find a new one. My doctor spent nearly an hour with me today and I was just there for a routine checkup – not even in a flare. Wow. I didn’t know that happened anymore.
5. I am so excited to hear how good things are looking. I feel fantastic and know a big part of it is the diet piece – (SCD/GAPS). I want him to see the proof and then I am hoping to come off of the Apriso to further show that diet is huge with this. :)
So, that is my update – right now I am scheduled for 1/2/14 but they left a message late today and had a cancellation for 12/9 – eek! So if it’s still open when I call tomorrow I will claim it. Rather get it over with – and be able to eat my collard greens on 1/1 instead of prepping for a scope – haha!
Hope everyone is having a happy holiday season and feeling good. :)
This is all so fabulous Caroline!! Whoo-hoo!!
Thank you for all the info as well. The new colon prep. Also, I like what the doc said about ‘minor’ bleeding. I can go months without any and then one day, all of a sudden, there is a bit, and then it’s gone again. Makes sense that our poor over stressed colons protest every so often. It doies not have to mean anything dire!!
I am so happy to hear how well you are!!
:)
Bev,
Thank you so much – I appreciate it. I hope you are feeling good too – how are things?
I know – I was so relieved that the little bit of bleeding apparently isn’t a big deal. Whenever I would see it my heart would sink and of couse I would start worrying if this was the start of a flare – but you know what? That worry is probably more harmful than the little bit of blood! But I am excited for when it all goes away totally. And it will. :)
Have a lovely weekend!
Hi Caroline!
I am feeling great!!! This is the second winter that I am not flaring!! It’s so wonderful.
I know what you mean…blood always causes us to fret…but I’m really getting past that nowadays.
Happy days to you!!
:)
YAY, Bev! So happy to hear that – hooray for non-flaring winters and summers and everything in between. :)