Introduction:
I was diagnosed with UC in 2011, but had clear symptoms since 2010 while pregnant. I’ve basically been flaring since, with one good period of about 8 months, thankfully during my the end of my pregnancy and my daughter’s newborn phase. Then things got pretty bad. Over the last year I’ve used SCD and supplements to get things under control. Not in complete remission yet, but getting closer every day!
Some more about me:
Sorry not a lot of time to write my history out right now, but I just want to say how thankful I am for this site and its bevy of positive peeps. Those of you who keep touting your tales of remission and holding the hands of those still in the dark days are simply lifesavers. This site (via Adam and his awesomely positive take on life) has gathered such a unique group of supportive people. Thank you.
Symptoms:
Some urgency, mild cramping with BMs, occasional blood, but mostly formed stool and good days. I’d say I’m 85% if remission is 100%. I was in a pretty awful flare last year.
Valerian Root for Ulcerative Colitis Night-time Relief
I just wanted to write quickly to share information about Valerian Root
, which is a supplement I recently started taking and have seen some immediate and very positive results with. It’s been mentioned on this board in the comment threads but I am not sure if anyone has written a post on it.
I’ve been on the SCD for over a year and complement that with a number of supplements (see below) and this has gotten me very far in my healing. One of the remaining symptoms that has been plaguing me though is night-time wake-ups. Basically, I wake up with gas pain or cramps. For the past three years I pretty much have only been able to sleep on my back because if I shift to my side I immediately get a gas pain or cramp that sends me to the bathroom.
But even while sleeping on my back, I still wake up with cramps. I’m doing really well now symptom-wise (although still in a flare as I do have active symptoms–albeit very mild in comparison to what it was last year) so I sometimes can just get myself back to sleep but often out of habit I get up to go to the bathroom. This may happen two or three times a night and it really interrupts my sleep. Not to mention my bathroom is up a flight of stairs from my bedroom, which is not a fun dash to make. (Imagine for a second how fun it was when I was flaring badly!)
I’m not sure if these night-time wake-ups are a hangover from when my flare was really bad and serious cramps were waking me up multiple times during the night–seeing me rush to the toilet to avoid an accident–or if it’s a hangover from when my daughter was a newborn and still needed nightly feeds and I was waking up at every rustle and gurgle from her. (I have been flaring for almost three years, including her newborn days) Or if it’s legitimate digestion problems that come up at night while I’m sleeping. All I know is that it interrupts my sleep and messes with my healing. And I’m sick of it.
Anyway, I decided to give Valerian Root a try as it’s a natural sleep aid and it’s supposed to also help with GI distress. I started taking 500mg about one hour before bed and began to see the positive effects immediately. First of all, my night-time cramps have pretty much disappeared. Second, I am sleeping so much better. I still wake up (it does NOT knock you out or make you sleepy the next day; it simply relaxes you) but am able to get back to sleep fairly quickly. This combination has been a really positive addition in my healing journey.
I imagine that night-time cramps and therefore restless sleep probably plagues a lot of us with UC. Valerian Root is marketed as a sleep aid and a natural herb for dealing with anxiety. I have never taken any kind of stress-reliever or anxiety medication before, so I was a little hesitant to try this as a result. But whether I like to admit it or not (I am not a natural-born Type D personality–ie I’m not prone to being neurotic–re the interesting study in Iran that Adam posted about the other day), UC has added a level of anxiety to my life that I have previously never experienced. And the fact that Valerian Root addresses both stress and GI distress (likely pointing to a link) has worked out as a win-win for me. Also, I really think we cannot overstate the importance of getting a good night’s sleep for our healing.
So I’m not sure how exactly it’s helping me: if I’m sleeping better because the cramps are minimized due to the Valerian Root, or if the Valerian Root is helping me to sleep better so the cramps no longer wake me. But whatever the cause, I am feeling better and that’s what I was hoping for.
Anyway, I thought I’d spread the word since I haven’t seen another post on Valerian Root before. This site has aided my healing so much. I’m very thankful for everyone who shares anything that gives us UCers hope in getting back our lives.
Medications & Supplements:
Meds:
Pentasa (I still take this as I experience no adverse side effects but I also don’t think it’s doing anything to help me. I plan to taper off at some point after I’m in full remission.)
What’s really working for me:
Supplements:
Probiotics: VSL#3, 1-3 packs a day, depending on how I’m feeling, and also 24-hour yogurt in the morning
L-Glutamine (thanks Bev!), one scoop once or twice a day, depending on how I’m feeling
For inflammation: fish oil, astaxanthin, (and on occasion if symptoms are worsening I’ll take Zyflamend)
Other: multi-vitamin, B-complex, Vitamin D, Valerian Root (500mg)
Diet: SCD, one year and counting
Other:
–Making sure I fully “do my business” before I leave the house in the morning! This lesson has been learned the hard way…
–Using this site and the awesome amount of information and anecdotal evidence on it from UCers in the trenches. Search it. Write comments. Get information. Share information. Connect. And get better!
written by Col
submitted in the colitis venting area
I was diagnosed with ulcerative colitis back in 2011, but had clear symptoms since 2010 while pregnant.
Hey Col,
Way way way big congrats to you! I’m big into thinking that sleep is super valuable, and often way overlooked as maybe one of (if not the) most important parts of our lives. Super happy to hear you’re getting better sleep!!!
I love this part of your story:
“But whatever the cause, I am feeling better and that’s what I was hoping for.”
Awesome, best of luck moving forward, and thanks for all the kind words;)
-Adam
Hi Adam,
Your recent posts about the studies of Type D personalities and the stress connection with UC motivated me to post this. I figured it was on everyone’s brain and so maybe good timing!
Sleep really is key. I mean we spend at least a third of our lives doing it–it’s got to be fairly significant, no?!
We’re all so grateful for this site. I know you’ve heard it before but it cannot be said enough. Thank you for dedicating all the time you do and putting all the positive energy and love into it. Your wife is a major support to us all as well through her graciousness in letting us take up so much of your time/focus! Please tell her we all owe her as well and think she’s awesome.
Happy snoozing to us all!
Best!
Sleep is super key!! for sure, and thank you again, and for sure I’ll tell Michaela about your comment, you’ve made both our days:)
Hi, my sleep has also reduced, I am a chopper pilot and it’s important to have good sleep, I am feeling better symptomatically but with an Indian herbal medicine, it’s good really,
How amazing that your symptoms began during pregnancy, too. Mine did as well – I know how hard that is. Like yours, the first few months of baby’s life were actually ok. By six months post-partum, though, I was flaring so badly that I had to take action.
I have two kids under age three – so know exactly how you feel, keeping up with a baby and also getting your health back on trAck.
Yay for your positive attitude, and your fabulous suggestion of Valerian Root. Thanks for such a wonderful and upbeat post!
When I was in highschool I used valerian as well, it’s excellent. Have been considering trying it again recently, it really does help with sleeping. I’m surprised it’s taken this long for people to catch on, it’s great, I ‘d definitely recommend it to everyone.
I’d like to know if anyone else has had positive effects in relation to valerian and anxiety though.
Hi Cassandra,
I think it has a mellowing effect, so maybe it depends on the extent of the anxiety being addressed? A friend had a panic attack on the way over to my house the other day. The attack passed before she arrived but she was in a state when she got to me. I ended up offering her some VR and she took it and later said it helped calm her. So there’s some anecdotal evidence for you, but again my guess is that it depends on the level of anxiety we’re talking about. Good luck if you do embark on trying it again. It’s certainly been helpful to me for sleeping and night cramps. Take care.
Thanks, Col! So happy for this information! =)
lynne
Sure, Lynne! Hope it’s useful. It’s nice to get a chance to pay it forward to everyone on this site. (I certainly owe a debt of gratitude at the very the least!) Best to you.
Fab fab fab!!
:)
Hi Col!
What great news Col! I had sleep problems but found out that I have sleep apnea on top of my UC. I do, however, use a CPAP machine and have been sleeping much better since I started using it about 4 years ago. If I ever encounter sleeping problems again, I will surely try Valerian Root. Thanks for the valuable info!!! :)
Hi Bev!
I was just wondering how you are feeling these days. Are you still in remission? It has been a while since you have posted that you are in remission and that you are taking the probiotic, L-glutamine and Astaxanthin. It sure was an uplift when you would post this info. As I stated before, I have taken your advice and am taking what you are taking and doing wonderfully. I have been in remission for a couple of months since I added L-glutamine. I had been in ‘semi’ remission for almost 2 years (since I was diagnosed) but, on occasion, I had slight bleeding. Since I have added the L-glutamine, I no longer see any blood. Why are you not posting your success story anymore? Hope you are doing well Bev!
Hi Natalie!!
I am doing okay…not as good as I was, but it is my own fault. I tried to change probiotics just over a month ago because RenewLife came out with the new 100 billion strain Colon Care one. You would think that would have been ‘better’…but it wasn’t…for me at least! There are different strains in that one, and although I’ve been back on the Critical Care one for about three weeks, I can’t seem to get my COMPLETE remission back. I have upped the L-glut, upped the astaxanthin, but there is still a slight bit of bleeding…I know that is not a good sign, however, this has all taught me not to panic any more! I am in charge and I will win this. It’s just going to take a bit of time I guess. The good thing is that there is no urgency, no cramping, no looseness…just that bit of blood…which is bad enough, but things have been so much worse when I was flaring 16 months ago.
The moral of the story is…we are not cured, even when we think that we might be…I was so sure that I was…this condition is so precarious, and it really peeves me…the other lesson is if something is working for you…DON’T DIVERT FROM IT! I won’t change anything that is working for me, ever again.
Thank you for asking, Natalie. No matter what happens down the road, I am 1000 times better without the meds them I ever was with them. That thrills me and keeps me confident and powerful!
Bev
Bev, I’ve been wondering about you, too. Sorry to hear about the bleeding. Ugh. You could always try the EVOO.
I seem to be steadily improving (I am SO thankful), tho not in remission yet. I went on vacation & splurged by having Mountain Dew with some meals. Oddly, it made me feel better. (Wha?!) I realize that drinking Mt Dew seems counter-intuitive, particularly since it’s so high in caffeine AND sugar. But, I’ve continued to drink a cute little mini can of it each morning and, strangely, I’m feeling & doing much better. I’m not necessarily recommending it, and I don’t understand how it could possibly help. But, it does seem to be doing something for me. Weirdness.
lynne
Thank you, Lynne! I’ll get there again…I almost am there thank goodness…lol
Life is good! I am still, like I said before, 1000 times better without the meds than I ever was with them! I felt so awful on meds…all I have right now is the slightest bit of blood…on the meds, I bled buckets, had cramping and pain, had terrible urgency…I never want to go back there, that’s for certain.
I am so glad to hear that you are steadily improving. That’s the name of the game, Lynn. It can take some time…heck, look at me! I was only off my Critical Care probiotic a week, and it’s taken a month to get back to almost perfect again!
Bev
:)
Thanks for the always encouraging words, Bev. And don’t beat yourself up too much for changing your regimen by trying the 100 billion probiotic. It totally makes sense to me that 100 billion would be more beneficial than the 80 million. Go figure. I’m sure your slight bleeding will resolve. And I’m celebrating with you that you’re still so much better than while on meds. Me, too! And so very, very thankful. :)
lynne
Thanks Lynne…like I said…almost there again! I’m feeling great and so happy that you are too.
Cheers
x
:-) and lots of positive and well thoughts. Like you say…no panicing over a little blood…just panic over a lot!! Oh wait, that last part is me! Dman, how many times do we say…if it ain’t broke don’t fix it?! No problem…it is obvious when you stop posting….so keep posting to keep yourself on the positive? :-) Best, Shelly
Bev…that was to you…I forgot it doesn’t always link directly in! Happy Friday!
Love you, Shelly girl!
I’ve had company since mid-August…but they are gone now…yey!! We live in a ‘resort’ town that swells to three times the population during summer…ugh :)
Bev and Shelly, I’ve been thinking about you both! Shelly, did the antibiotics end up happening? And how are you feeling these days?
Funny enough Bev, I ALSO noticed your absence but figured it was time for summer holidays for most. You know, I’m pretty sure that the stronger probiotics (which they market as Colon Care) that RenewLife sells contain high Bifidobacterium, which is one of those bacteria that multiplies quickly and can get out of control easily in UCers /IBDers and lead to problems. This might be what happened in your case when you upped from 50bil to 100bil.
It might just take a while to starve off those extra bifido–you may want to add a probiotic that only has Lactobacillus Acidophilus to help up the numbers of some of the friendlier neighbors in your gut or eat some yogurt or sauerkrat or some other fermented foods. I had a blip in June, also due to a temporary change in probiotics when I ran out and then I drank some wine and argh started seeing blood. I got back on the VSL but also attacked it from an inflammation standpoint. In my case, I started taking a half of a dose (one pill) of Zyflamend. I generally find Zyflamend a bit strong (it kind of makes me nauseous) so I just have it on hand when I need some super inflammation power! I also drink a ton of green tea which is another natural anti-inflammatory. Anyway, you may just need to add another anti-inflammatory in the mix along with the asthaxanthin for the time being. Like turmeric pills or something. These are just some ideas in case you don’t see an improvement sticking to your usual protocol.I know you’ll be back in good form soon because you’ve got killer karma behind you lady! You’ve helped so many people, including me. We all love Bev!
Best,
Colleen (now Col because there are too many Colleens on the site!)
Wow,,,thank you Col!!
I had no idea about all of that! I have started taking one of my Critical Care probiotics before bed, and then another upon waking, and I have actually noticed improvement! Two per day is more expensive, but I’ll do anything to get back to where I was before. Perhaps those particular bacteria that my colon seems to love, need to be upped for awhile?
I realize now that the bacteria in the Colon Care probiotic were different…very different, in fact, to the Critical Care one. What a bonehead I am…I thought ‘Colon Care’ and 100 billion, instead of 50…lol…more is better…that’s all I saw and thought about. Never again, let me tell you! If it’s working…don’t change it…BIG LESSON!
Thank you for your suggestion about adding another anti inflammatory…I wonder if I could just double up on the astaxanthin…
:)
Bev,
I did the same thing when my VSL ran out and I even knew I should be careful with anything marked HIGH BIFIDO but I thought maybe I was far enough along in my healing for it not to make a difference. I took the RenewLife 200 bil. It made me feel worse right away so I stopped immediately. Anyway. don’t be too hard on yourself! We’re constantly experimenting here–sometimes it’s hard to know when to stop! But you’re right, if it ain’t broke…
I’m happy to hear you’re almost totally back on track! I guess it won’t hurt to double the astaxanthin. I don’t know if anti-inflammatory supplements are one of those things it’s better to rotate or not. But adding something just for a short term might help to get any inflammation under control. It worked for me with the Zyflamend. I took it for about 2-3 weeks and then stopped and haven’t seen the blood come back.
Another idea is to take one more of your 50 bil during the day. I don’t take probiotics at night usually but find good results when I take one late afternoon, a couple of hours before dinner kind of thing. When I take 3 a day I do one first thing in the morning, one late morning (I’m an early waker), and one late afternoon. This seems to work for me. I know it’s expensive with the extra probiotics–but it’s only short term until you’re back to one a day, which you will be soon enough!
All my best.
That’s exactly what I am doing Col…taking one probiotic capsule at bedtime and then another one when I wake up! It’s working fab!! I feel almost 100% again.
Thank you again :)
Hi Col! Great story and so glad you are doing well. I can really relate to many parts of your life. I have to go down 3 steps and then right back up 3 steps from my bedroom to my bathroom and that is a real challenge when the urgency hits hard! I also have to sleep on my back for the same reasons even though I have always been a left side sleeper. I started taking 1 teaspoon of cannabis leaf and added Valerian root and I am able to get back to sleep much easier. I truly believe that sleep is of utmost importance in recovering from UC. Well thanks for sharing and have a great weekend!
Later,
Don
Don, The kicker is that we even built our house and planned it that way. Young and dumb and healthy as a horse–never assumed I’d get sick or have bathroom needs like those in a flare. Lesson learned. If we ever move out, the next place will definitely have a more flare-friendly floorplan just in case! Good preparation is sometimes half the battle when symptoms are bad…
I saw your update on your own post and I’ve been meaning to write you there. It’s exciting to read of your FMT preparations. How did the talk go with your doctor? Glad to hear you’re sleeping well. I bet VR and cannabis leaf will also help in keeping high emotions at bay when you do the FMT (excietment, anxiety, etc). Probably good to be calm during that procedure! Best to you. Colleen
Hi Colleen/Col!
Thanks for asking…hanging in there. Guess that’s why we always get quiet when things aren’t going well….huh, Bev?! I still have not taken the antibiotic. Still have an ear infection. Tried another round of the herbal “Med” and now something different that is homeopathic and a tincture that should also help the UC…fingers and toes crossed. UC is a bit out of control…fast and furious for me as always, but am starting back to school/work on Monday so no choice, but to get better. Increased vsl3 DS, herb, omega 3, vit d, Smoothies and tapered close to SCD, but still with some gluten free organic oats and occasionally gf organic rice pasta to help keep my weight and not starve!
Still lots of stress, but we saw a Dr. who finally listened and is treating my now spouse! :-) Seizures and demyleinating disease of central nervous system, etc.she can’t go back to work and not sure about her being home alone.
Anyway, another beautiful Maine weekend. :-)
Thanks and best back at ya! Shelly
Too right, Shel!! Too right.
I guess I feel like I don’t want to give ‘advice’ if it ain’t working for me at that moment…well…I’m back…and I’ll be giving the same old advice again!!! Because it still does work!
LOL
Bev…wooohooo….and get back on your soapbox girl! :-)
:)…LOL!!
SHELLY!!
CONGRATULATIONS ON THE WEDDING!
That’s wonderful news. So happy for you both. Love is grand!
Hang in there. I work from home which is probably the only reason I’ve been able to work throughout the height of my flare. I can’t imagine having to be somewhere all day where you need to be on your feet! Take care and take time off if you need it. It will benefit both you and your lucky students in the long run. Hope you can nip it all in the bud very soon, including the infection. Knuckle down as you are. And give it time. Thinking of you! And jealous of your Maine summer. It’s hot and sweaty where I am! I’m so ready for fall.
hi Colleen…thanks..it was awesome. We actually had our boat fixed long enough to “elope” on the lake with a small group, weather perfect, loons, baby eagle and sunset! :-)
I just noticed on the side where recent comments are you are now Col on…Colon!! :-) :-)
Thanks again…will do…and you too! Sorry about the bathroom…that was a mandatory plenty when we were looking! Minimum of 2…1 per floor. Yours is like the UC Olympics…sounds like you won gold. I’m lucky to medal in a bad flare, toilet seat up, elastic pants and definitely no door ever closed…never have company during a flare rule!! :-)
:-) Shelly.
Oh Shelly that sounds absolutely perfect. Baby eagle and all joining in on the celebration! How cool.
I was just thinking–have you tried Larch Root Extract? Adam posted something about it a few weeks ago to share a story of someone’s remission. It’s an immune system supporter, right? Maybe it’ll help your body fight off the infection? Not sure but it was just a thought.
Col on Colon! What was I thinking? One of my better-humored friends thinks it’s pretty hilarious that Colleen has Colitis! We have to laugh when we can, don’t we–it’s another form of medicine!
As for my place. Oh gosh it’s so not infirmed or ageing friendly. I love it on many levels (pun intended) but not sure what we were thinking. It’s a small city apartment. One of those that stretches over four floors. The staircase is key to getting around; I’m up and down it all day long. And only one bathroom. I have to laugh about it all (again) but seriously there have been moments when I’ve had accidents simply because of the staircase or the one toilet. But our toilet is awesome: heated in the winter and opens automatically!
Think this comment might end up out of order. Couldn’t find a reply button on your reply. I’m digging the groovy new look of the site though!
Enjoy the rest of the weekend!
Colleen
Hi Colleen,
It is a little confusing when the reply thing is missing, but i guess it is like when the boxes ran out before?!
I do remember that story. I get nervous about mixing and matching too many Herbals, too. I figured i could add 1 thing in that I haven’t tried yet and check that first. Hoping to hit the health food store today. I have also tried to move around and amounts of vsl and fish oil, too. I figure with our systems who knows that at any given moment it will get absorbed more or less??
Who knows…crap shoot?! :-) :-)
Best, Shelly
Hi Bev!
OMG….I just KNEW something was wrong when you stopped posting that you were in remission and not mentioning what you take. Gee….I hope your original probiotic will kick in and will put you back into remission SOON. So far, I have been doing well with the probitioc, L-glutamine and the Astaxanthin. Now, I am worried after hearing what you are going through. God only knows what can happen to ANY of us. I do worry about colon cancer in the upcoming years, but I do not dwell on this nasty disease. Hopefully, they will find a cure for UC and I hope it’s in the very near future. Good luck with going back to your original probiotic and hope you will see start seeing an improvement soon. I will be watching for your post saying that you are back into remission!!
Bev,
Maybe relax and think of number 1 for a bit, there’s nothing wrong with doing that when you “ihaveuc”. We need you but so do you Hun, take care and good luck!
X
Cheers my friend :)
x
Actually, I’ve had a lot of company for the past two weeks, so I really haven’t been commenting or keeping up. I’m back now…oh oh…watch out everyone!!
I guess I do tend to ‘disappear’ when I’m not 100%, at least in the past. I so badly want this to work for all of us…and I am getting almost back to where I was!
You’re a wonderful gal, Natalie. Thank you:)
Hi Col,
Glad you posted this story. It seems to be coming up more and more. Tomacina brought it up again a couple of month’s ago with her Marley’s Mellow Mood drink. I actually already had it on my next list for the health food store. Glad you found another something and you are officially part of our little support community à la Adam!
Best, Shelly
Hi everyone, It’s been awhile. I feel guilty because since I started the SCD back in February of this year and have ‘cured’ myself of symptoms of UC I haven’t been around supporting you guys. Thank goodness Adam emails me the new stories. I too, am so grateful for all the like minded UCers who have shared what works for them. It led me to the SCD diet: even though I had been reading about it for a couple of years, it seemed so prohibitive and there was at that time no evidence for me that it worked. I cannot reiterate enough how crook I was in 2008 and on and off until February this year. In 2008, I was at death’s door and said to my doctor, “My bowel is going to drop dead!” How I taught at primary school I have no idea. The moment the last kid left the classroom, my bowels erupted and I would make a mad dash the length of the school to the nearest toilet. Accidents, explosions, filthy pongs and jets of blood erupting from Mt Vesuvius. I was no longer a ‘woman’ but a cave woman. Well, the SCD has cured me. I am confident that if a person adheres to it strictly, they will become healthy again. After my success I have two aunties and an uncle following the diet now. My uncle joked to me just recently, “When someone comes to dinner, what do you give them? Nuts?” Then just the other day, he rang and asked for more detail. He decided to do it when he took stock of all the wheat products he was eating. He said if he stopped eating all of them, there would be nothing left on his plate. I am convinced that in the not too distant future, virtually no one will be able to eat wheat and other grains because they are added to every conceivable food product that we eat and it’s overkill. Emphasis on the kill part. I will certainly be updating you if things change for me and I find the SCD not doing the trick. But I have to tell you, I have had enough life situations to cause me untold stress in the months since starting the SCD. I put my house on the market to sell myself, without the services of a real estate agent. I don’t recommend it. People are nasty. I sold my house. I packed up my house and moved to another town with my disabled daughter. You may remember that I shared with you all that my sons have deserted us, my sons, and Cindy’s brothers, who we love to bits and haven’t seen or heard from since October last year. I think they got sick of dealing with our ‘crap’ literally. I have since texted them that I have cured myself but I got no response. I have seen their pictures on Facebook and it makes me cry. Now if that isn’t enough to send a person into a flare up I don’t know what is. So, all I’m saying is, the SCD works. I’m glad I read Adam’s book and I’m glad I took the bull by the horns. God bless you, each one. Catch you later.
Hey everyone! Thanks for sharing the info on valerian Col. It sounds as if you are on the right track. It sounds as if you have a great mind set. I really believe that is half the battle with this disease! you can get there :-)
Bev,
Very sorry to hear that you have hit a snag! You have been a pioneer and an advocate for all of us. We are sending all that love back to you now! Graham was absolutely right when he said it was time for you to take care of you! You know how to get where you want to be and I have no doubt that you will be back there soon. Knowing you, you will learn something fabulous along the way that will yet again benefit us all! We love you!
That’s so sweet, April. Thank you!
I will get there again :)
Thanks April! And I wholeheartedly agree with your words to Bev! Best.
Hi Everyone,
So good to hear from you Bev! Sorry you hear you had a bit of a relapse. I did too but it was when I drank some coffee. Not a lot of bleeding but a little. So I cut out the coffee. I’m under a lot of stress right now since I am moving. Noticed that my knee was really hurting me, so much so that I could not walk. A friend of mine suggested hyaluronic acid tablets so I have been on them for about 2 days and the pain has gone away. I’m not sure if this is related to my UC or not. I still take the RenewLife and astaxanthin, and L-Glutamine. I’m also still on Prebiotin which I love as it helps to keep me regular and easy to take in cereal or a hot drink. I may think about Valerian. I woudl rather keep to a natural regimen if possible. Best wishes to everyone!
I am so happy to hear that you are all still doing so great…please don’t change a thing! That’s where I went wrong…I just felt so darned good, I thought the UC was gone! Oh, if only…lol
Thank you Lane…this all means the world to me :)
Boy, am I ever glad I inquired why you haven’t been posting about your remission lately. I sure got a lot of people wishing you well Bev….including ME! If it wasn’t for you, I probably would still be taking the Lialda and not doing so well. I hope you got to read my last post at 2:11 p.m. I, too, wished you good luck. I know you will get there again Bev!! By the way, I told my GI that I weaned myself off the Lialda and was taking a probiotic, L-glutamine and Astaxanthin and he didn’t seem too upset. In fact he said, since I am doing so well, I will not need to have a colonoscopy in October! YAY!! He did, however, say I would definitely need one next year. Thank you so much for encouraging me to stop the Lialda! You are the greatest Bev!! :)
You too Natalie…you too!
You are all so wonderful. WE are all so wonderful!!
Thank you for info on valerian root. Yes good rest is important. On my shopping list.
Thanks for reading , Rosanne. Let us know how it goes for you if you do try it. I’m definitely curious to hear if others have similar results! Best.
Checkout a phenibut, taurine, l-theanine and melatonin combo for sleep. Years on/off insomnia and tried so many prescription drugs which all have nasty side effects but I have never found anything like this combo. Phenibut is GABA(inhibitory/relaxing brain hormone) analogue which basically settles you down. It was used by cosmonauts as an anti anxiety medication due to it’s potency and lack of drowsy side effects. But it is available as a dietary supplement in US/EU. The others have similar effects most the GABA system and melatonin actually has been shown to have positive effects on auto immune diseases. There are tolerance issues with phenibut if you use excessive doses > 2g. This has been working for me for months.
Hey there! I was so happy to read this post, as I too have a terrible time with sleep and having to get up in the middle of the night. I’ll start off with the fact that I’m a night shifter, so my sleep schedule is usually messed up to begin with. But I unfortunately inherited my father’s awful sleep habits on top of that and since I’ve been out of college have had to fight tooth and nail to get good sleep. I have been through sleep aids and night time teas with little luck. It’s awesome to find an all natural sleep aid that I can feel comfortable with and it helps the gut too!!! Only question is how long before you started to notice results? Was it instantly like other sleeping pills or is it something that you have to take a few nights before it starts working? Also, do you take it right before bed or an hour or more before you want to fall asleep??
Thanks for the help guys! Looking forward to getting this at the market!
Hi Courtney! I hope it helps you as well. As I wrote above, I still wake up sometimes (I’ve never been a great sleeper either) but I’m able to get back to sleep much more quickly now. And seriously one of the best things is to be able to roll around in bed like a normal restless sleeper and not have to worry about cramps! I’m even sleeping on my stomach some nights. Re your questions: I started noticing results right away. The very first night I took it. I started with half a dose but then moved up to the full dose after about three days, I think. I take it about an hour before I plan to go to bed. I’ve never taken any kind of sleep aid before, so I’m not sure how this will compare for you. Please check back in and let us know. It’s been less than a month since I started taking it, so I’m still learning as I go as well, but the results were so immediate and so positive, I wanted to write to let everyone know. Hope it helps you too!
I need to try this. ever since I have been tapering prednisone, sleeping is impossible. I really need my sleep, too, in order to function. gonna go to the store and look for this.
Joanna, I’ve read positive things about VR countering insomnia from prednisone. I really hope it works for you. I agree, sleep is key. Insomnia is nobody’s friend. Take care and let us know if this helps!
Hello Col,
I’m new to this website and have been reading many posts which I find very helpful!! Thanks to Adam for starting all of this! My story is very similar to yours Col, my symptoms also started while I was pregnant in my third trimester(summer 2011). Things got better after my son was born. Did a sigmoidoscopy in April 2012, they told me I had UC but it wasn’t very serious, proctitis. He gave me pentasa suppositories which I never used. By fall of that year a got my first real flare…it was horrible!!! Lasted until end of February when I finally got a colonoscopy done and was told I had pancolitis:( from that point on I’ve been taking 4g of pentasa which put me in remission until July. Then I had a short flare until mid August. Now I’m flaring again, just got out of the hospital because I was bleeding and while I was there I tested positive for MRSA. Now on antibiotics which are making me so sick!! Anyways, I’m also taking renew life critical care probiotic, L-Glutamine, fish oil, vitamin d, ultra inflam by metagenics. I upped my dose of the probiotic taking 2 at bedtime until I’m done antibiotics. I also don’t sleep very well, not because of the UC thankfully but because my 2 and 4 year old that get up almost every night. Then I find it hard to fall back asleep! Thinking that when I start feeling a bit better I will take the VR. Maybe it will help. Any other suggestions on how to get back in remission would be great!! I’m a primary school teacher and want to get back to work soon!!
Hi Rose,
How are you doing now? It sounds to me like you’ve got the right stategy with the extra probiotics while on the antibiotics. Being in an awful flare while raising young children is a struggle. It can be completely overwhelming. I am still taking the VR and still doing well most nights. It doesn’t knock you out–I wake up no problem if my toddler cries or wakes during the night–but most nights I can fall back to sleep pretty easily. The biggest difference is not having those gas cramps that had me sleep running to the bathroom. I feel like my night-time digestion had gotten better since taking the VR but can’t say for sure. My motto though is to keep doing what works!
I love Zyflamend, I take it every day and have seen a big difference in inflammation all over my body! I have never tried Valerian root but will now. Also, does anyone have suggestions for night sweats? I sleep on my back as it is tough to sleep on either of my sides. And I would like to wake up without experiancing extreme heat and night sweats. I used to think it was menopause but have learned it is U.C.
Hello ,
I just recently tried malatonin supplements and they seem to be working. I fall asleep sooner and do not wake up to run to the bathroom. Also, have young children that wake up and I always hear them. I hate this disease and am trying whatever works. On a strict diet now, no wheat, dairy, peanuts, corn products, caffeine. Trying to get out of this 3 month flare, lost 15 pds, was hospitalized. Trying to stay positive but it’s very hard some days:( love reading these posts, makes me feel like I’m not alone.
Rose
Gina,
Quick question, I also find that when I sleep on either side it’s worse…why is that? I have tried sleeping on my back but have a hard time falling asleep not used to sleeping in that position.
Rose
Such great feedback from this group!! Am learning so much useful information and am so encouraged by you all!
Actually got some good probiotics going and got some Valerian Root to keep on hand for those bothersome nights. (I just can’t believe nobody has mentioned the unbelievable smell of them! Lol! A ‘sharp smell that most find unpleasant’ is the understatement of the year! Ha. But looking forward to giving it a try!)
Thank you all so much for all the invaluable information! :)
I’ve been struggling with UC for many many years, 17 to be correct. Stared about a year or so post sec on pregnancy. Have been bouncing off and on prednisone, cortaforam, multiple long flares, then 4 years ago got on budesonide, a form of steroid and thats what kept me in remission, but….because i was on it for too long I’ve developed adrenal insufficiency….horrible…with that I was diagnosed w breast cancer…and developed terrible anxiety with sleepless nights.
I learned so many wonderful things from this website, thank you ALL!! Haven’t heard about ZyflamendL-glutamine and Astaxanthin, as eel as VR, will be so happy to get on it. Please, help me with doses for the above mentioned supplements! What dose to start with and how to increase.
Thank you very much, I’m blessed I came across this site! Wish everyone good health and restful nights.
Hi, I’m fairly new to this site. I have learned a lot from all of you. Thanks for the honesty and details, it’s helping me evolve my response strategy. Folks have been talking about Zyflamed and VR. I see on Amazon that Zyflamed makes a nighttime preparation that contains VR. I’d want to price it out to see if it’s more economical to take this, or the VR separately. And of course the mg amount would have to be what you’re looking for. Adam might be able to provide a link. Thanks again!
What a fabulous post. Thank you. I’ve had two nights on valerian root tablets and got a full nights sleep after months of waking up several times.
I really can’t thank you enough.
I really should read more of these posts rather than keeping my head in the sand and thinking this is happening to me!!
Am so happy today. Even my friends have said my mood seems so much brighter. I LOVE my sleep. I LOVE my work. And I just want to do it and not waste time being ill. Bloody awful disease.