I am 34, and from the lake district in the UK. I am usually an energetic fun loving happy person but UC is currently kicking my ass and making me a little depressed. Help me good people of the world and I will share my experiences with you too.
Some more about me:
I love music, when I am well, I am DJ, promoter and events organizer in North West UK.
Mega-tired all the time, have to be very careful what I eat, got blood and mucus going on at the moment and churney stomach. A general loss of drive…
My Colitis Story:
I was diagnosed around 3 years ago but have had the condition for about 4. I have been in remission for the last year but it’s just come back.
Shall I accept the meds or keep trying with diet and alternatives?
I really really love my food so diet is sooooooo hard…And how do I get my energy back?
I have found that my social life has suffered massively and having a girlfriend is very difficult and embarrassing when flaring.
It’s weird, when you are in remission you almost forget there is anything wrong with you, I was drinking quite a bit, partying hard (which is kinda part of being a DJ and events organizer) and eating pretty much anything I liked with no regard for the consequences as I wrongly thought that I was fine again. But then BOOM it came back and now I am a hermit once again.
Now it feels like there is no light at the end of the tunnel and my personal, social and working life is suffering because of it. I am certainly in some need of some encouragement and advice and someone to convince me that things are gonna be fine again.
My brother is being very helpful I must admit, he is always doing research for me and telling me about foods that are supposed to be good for me and stuff. But really I would like to talk to some lovely people that are experiencing the same things as I am.
Also I would like to know how often people out there are having the bum camera or colonoscopy or whatever you wanna call it, I have only had it once when I was diagnosed, should I be having it again to keep and eye on things?
Anyhow thanks for listening.
Medications I’ve worked with:
Pred foam has worked best for me but I had to stop taking asacol as they said errrr can’t remember what you call them levels were dangerously low so took me off them, so how do i go about staying in remission?
written by Dave
I am 34, and from the lake dsitrict in the UK. I am usually an energetic fun loving happy person but Ulcerative Colitis is currently kicking my ass and making me a little depressed. Help me good people of the world and I will share my experiences with you too.
I’ve had 3 sigmoidoscopies (short colonoscopies) since my diagnosis in August 2012 and one of them was without anesthetics…not fun. Maybe try the meds until things settle then do thw diet and alternatives? I drink as well I admit but I honestly don’t feel like it affects me too badly. Maybe I’m just in denial lol
Hi Dave! I was diagnosed in 2001 and have had 4 colonoscopies, 3 of them since 2009. Once my flares got worse in 2009 I found myself getting them once a year verses the regular once every 5 years for UC patients. Now they want to do another once this year to do biopsies, checking to make sure there are no cancer cells in there.
I have never tried the diet or alternative treatments but lots of people on this site have and say they work very well. I don’t think my love for food would allow me to try a very strict diet, and I am struggling with a bad flare since september, so for now I am trying meds. I was on asacol for many years but it stopped working, now I am on remicade and imuran which both shut down the immune system to reduce inflammation. I hate both of these drugs and the side effects but they have been very effective so far for the UC. They are both meds used when the other meds aren’t working. However even though they are long term meds I don’t plan to stay on them long term, so I may be trying strong probiotics and other natural treatments in the future.
I hope you feel better soon, I have been at that point where I really thought I was never going to get better. It’s scary especially when you take meds and they aren’t working and it’s like well now what?? But then finally, I did find something that worked and we just have to all keep trying and know that eventually relief will come!
What are you taking now for the flare, just the pred foam?
Hang in there and stay hopeful… I was diagnosed in Feb 2010 with UC… never took any meds but it took almost 2 years to get into remission with a good diet, yoga, chiropractic and holistic supplements.
Sadly, my remission only lasted 6 months and the last 6 months I have been in a constant flare-up… my symptoms are blood, mucous and PERSISTENT constipation. So, when I do go to the loo it is quite painful. It’s been rather DEPRESSING, I also have moments where I feel like I will never be truly healthy… but I know I have to stay positive. I definitely get cabin-fever, but I try to be productive as possible with my time. It can certainly get lonely and boring- and that is something everyone on this site can relate to.
I also was having a few too many glasses of wine in remission and not being as vigilant with my diet and not managing my stress. For me, the biggest lesson in this disease is self-care and I think it’s something I have to truly commit to for the rest of my life. I have given up drinking, coffee, milk and gluten and things have been better. I take Natren Trinity Probiotics, George’s Aloe and Vitamin D daily and I have seen improvement.
It just so happens I have a colonoscopy scheduled for tomorrow afternoon. I actually have to start drinking the toxic prep liquid in 37 minutes. UGH! For the first time, I am actually open to trying short-term meds to get me out of the flare.
My plan is to do MRT food intolerance/allergy testing…. this is a high-tech test that will accurately measure the immune reactivity to at least 150 foods and additives. In my research, it seems if I can determine the foods to avoid than my intestines will finally have a chance to heal.
I tried the SCD diet, however, it made me feel worse. And that may have been because I was eating all the wrong foods for my specific system. There is no cookie cutter diet for all of us.
I am glad you have the support of your brother… I have had to ask a LOT of people for help during the last 3 years and their love and patience has meant the world to me. Stay positive, do some yoga/meditation, try to eat as healthy as possible and check out the Leap MRT testing (I know it is available in the UK) I found a test for under $400 here-
I’ll keep everyone posted on my colonoscopy tomorrow…
All the best! There is so much great advice on this site so just keep reading.
Just wanted to comment on the constipation. I cant begin to explain the fear and anxiety I went trough becasue of constipation. I tried everything but could just not poop on my own (when I was not going through a flare of course). Worse the stimulent laxitives I was taking we loosing their potency. Even worse no one believed me that it was an issue even my doctor. They kept saying just wait you will poop on your own and I would wait like five days and all that would do was give me headaches, and could not even eat becasue I felt so stuffed (I know gross but true). By the way adding fiber does not work – fiber works for normal people but becasue UC weakend my system so much and fiber is such a weak laxitive – noting happend.
Then I found this website: http://www.optimalhealthnetwork.com/
Go there and check out the enema bags or buckets (I like the buckets better – easier to clean) Get her videos they are poorly made but have a ton of info. Allison I now poop every morning and it is great. Please let me know if you have more questions as I have been reading about enemas and constipation and laxitives for a year. One last tip if the enemas are not enough (which 95% of the time they are) try the enemas in conjunction with Miralax – It is an osmotic laxtive, very safe and has no effect on me as far as my UC is concerned.
Feel free to email me in regards to the enemas!
I’m also in the UK :-) i really hope remission comes for you asap! The hermit feeling is the worst. I think if your really low and things are getting out of hand I’d go to the docs and try some meds. You can always do diet and alternatives too, and might be easier when you’ve enough energy to really give it a shot?!
I was only diagnosed in August but been flaring since may. Finally feeling a bit more energy but depression has creeped in. I’m usually a very energetic mum of 2 under 4s and lots of fun… UC has got in the way but I’m getting there. I’m on prednisone and started pentasa on 16th dec. I’m actually now blood free, mucous rarely and the agonising cramps are going!!! My docs tried mesren before pentasa and give me cocodamol for the cramps and loperamide. I’ve not taken the pain or anti diarrheal meds in 2 weeks. Still weaning the pred though. I’ve started scd a little, if things slide again i will go all out scd.
Hang in there,
hey dave. i totally know what you mean about being tired all the time. i never have energy for anything when i’m flaring- just a total lump.
i think you need to make some changes fast before things get worse… either with meds, supplements, diet change. yeah, they all suck but so does flaring. you just have to be committed and strict.
as for colonoscopies, i had 3 in 2012. my doc wanted to do 4, but i told her she was absolutely insane. i was diagnosed in 2007 and had 5 during that time period. my doctors have all been obsessed with butt checking. i think it’s a sign they have no idea what they are doing, but that’s just my humble opinion.
i follow scd/paleo and while it decreases some symptoms, it’s definitely not a cure all for me. i’m still flaring and get blood tranfusions. i’ll be starting humira soon.
I have UC since 1984 and have had lots of flare-ups and have had at about 50 -100 sigmoidoscopies over the past decades (only the last few years with anesthetics)
My advice for you: go back on medication untill the sympoms disappear and stay away for at least a few months. After that try to reduce your medication gradually.
And by the way have they checked if you are lactose intolerant? Wish they had done that twentyfive years earlier. Would have saved me a lot of misery.
I meant “stay there (with medication)”
thank you so much for all your replies, they mean so much to me they really do.
Kris – yea I have probably been in denial also with regards to the booze but I’m pretty sure there is a correlation between drinking and flaring. It was difficult not joining in on all the holiday celebrations but there was no way I was going to make myself even worse by drinking, I figure it is going to do my entire body good to be dry for a while anyhow. I often wonder whether one of the reasons I may have got this stupid disease in the first place is becuase of my over use of booze over the years, specially in my student days, who knows why we get UC? Maybe it was all the antibiotics I was on for years for my skin complaints? maybe they messed up my gut flora. Maybe it was the drug trials I took part in to make money when I was a student? god knows what they were putting into me.
I’m not gonna lie though, once I achieve remission (fingers crossed it actually happens) then I will definitely be having a little wine here and there but will try to be more sensible with it. I will not been drinking beer any more thats for sure, that is absolutely the worse thing for me.
I hope you feel better soon Kris, much love to you from the Lake District.
It’s weird to me how you all seem to have had so many and I have only had one in all these years, maybe they didn’t think my symptoms were bad enough? will have to ask why this may be
Kimberly – yes I am just on predfoam, that is already more than enough for me, I am so wary of most traditional medicines even though i know they have their uses. I hate anything that supresses the immune system even though I know that it is our immune system that is causing us the problems.
I have to admit though that the foam worked the last time I had a bad flare and seems to be doing the trick again this time. However I really don’t think that the foam alone would do the business, I have growing faith that my diet and supplementation are key factors in this battle, and that is what it is, a battle.
Despite what my specialist says about diet not being a factor, (which I think is absolute nonsense) I believe that if I took the predfoam and then ate a a load of burgers and kebabs and washed them down with beer and vodka I would still be screwed. So Kim, yea, give diet a try and defo get some good probiotics with as many different strains of good bacteria included. I have everything crossed for you and wish you only good heatlth. :)
Allison, yes please stay positive, that is what I am trying my hardest to do, I am realy really trying to not get stressed every time i see blood and to just accept that it is part of what is going on with us, stress defo makes things worse. Can I ask, for the entire 6 months you have been flaring is there a specific diet have you stuck to and have you strayed from it and have you tried any other supplements to the ones you mention? do you feel like you are heading towards remission?
I am fascinated to hear about the results of your food tests. Hope today went well for you and wasn’t too stressful. Much love to you and hope you feel even better soon
Jen – soooooooooooooo happy that you are getting better, that’s really good to hear, I have everything crossed for you that you get into remission soon. Write back and tell me how you go, where in the UK are you? do you know anybody else who has UC in your area? When you say you have tried SCD a little, what changes have you made?
Joanna – thanks for your reply, when you are tired, do you try to excercise to try and gain some energy or are you just simply too beat to do it? I find myself falling to sleep early evening and just losing the drive to carry out the simplest of tasks when I am at my worst. Thankfully today I feel as if I can actually do stuff and as I said above, I do beleive the diet is helping. Aside from the stupid ulcers I am probably the the healthist I have ever been (i have never eat so well and so much fruit and (cooked) vegetables. Lets hope the diet and probiotics/supplements continue to do the trick once the predfoam is tapered off. I am very worried I am gonna go back to square one once the coarse is over as I am not allowed to take asacol to maintain remission
Do you use probiotics? ANyhow much love to you and I really really hope you get better real soon. Much love to you.
Yerrie – OMG – 50-100 – that is so many, how do you cope with them when not under anesthetic? the one I had they gave me some kind of rohpynol type substance and it was the strangest experience ever, it was as if they wiped my brain. Apparently I was conscious and conversational during the entire process but I don’t remember a goddman thing, really weird
did your doctor do a lactose intollerance test on you? I have cut it out and only use rice milk now, I admit to occasionally having a small amount of cheese but suppose i should cut that out too
HOw are you doing currently? do you use diet and supplements and do you get to excercise much?
Much love to you and hope you don’t have too many more camera times
Here is a typical day now with regards to what I eat, drink and take
2nd jan. 2 wheat free toast.
Smoothie (1 banana, square of root ginger, spoon of yea valley pro biotic yog, Metagenics Ultra Bifidus DF pro biotic powder, inulin, aloe vera, rice milk)
sliced turkey and very small amount of cheese in wheat free sandwich
predfoam at 2pm
home made curry (not spicy) with tuna and LOADS of turmeric
smoothie (banana, aloe vera, rice milk, kiwi, ginger)
1.10am pred foam.
1 piece wheat free toast with very small amount of cheese
throughout the day, lots of ginger tea, sometimes with honey, sometimes on it’s own
ALso, vit d3, fish oils, blackstrap molasses, folic acid, l-glutamine
At this point I just eat good clean REAL food… nothing from a package. I am gluten, chocolate, alcohol, coffee and dairy fee and that has made a huge decrease in gas/bloating. Mind you- these are all the things that I LOVE!!! The last 6 months I have been at a stand-still, not getting worse or better.
Isn’t it funny to talk to a total stranger about your most intimate doings…hah!
I will let you know about my allergy test which I will be doing mid-January.
The results of yesterday’s colonoscopy were not that surprising… lots of inflammation in the lower left colon. For the first time I am trying prednisone (a very short dose) to try to squash the inflammation before I start the elimination diet.
The doc also gave me a Rx for Lialda but that looked scary when I read about it- one of the side effects is Ulcerative Colitis.???
Again- just stay positive. Sometimes we need to get very low so that we can pick ourselves up and start in a new direction. I have to believe in the body’s ability to be healthy…
IN New Jersey, it is chilly but the sun is shining and I was able to go to the food market and out to lunch… so that’s a good day!
Yep…lialda (or asacol) made my UC alot worse! Weird how a drug that is maent to combat UC, can actually exacerbate the very symptoms of it!!
Dave…have you tried a good 50+ billion probiotic? I am in remission and on no meds at all, thanks to taking probiotics. I was on asacol for 13 years straight, and it never really did work. I did the foam, the enemas, and when all that stopped helping even a little bit, I decided to try probiotics. I’m so glad that I did! The doctor told me they would never work, that I had to stay on meds….and try stronger ones like pred and remicade. I said NO WAY to that.
Along with the probiotic (once daily first thing in the morning, on an empty stomach), I also had to add L-glutamine because the only UC symptom still hanging on was the bleeding. It stopped the bleeding within two days, and I have been taking it ever since. I have been in remission for 11 monthns now!
You can and should try the natural way before you ever try the meds. Trust me!
Hey, Dave. I know it’s hard to change your life style when you’re young and living a certain life style. I drank a lot of beer when I was in my 30’s. I also smoked cigs so even though I had symptoms, which were worse after a night of drinking, I never got really bad, mostly bloating and cramping and my stools were really thin. After giving up cigs, I got really bad, started smokingwas fine, this went on until 3 1/2 years ago, I gave up smoking for good and now I get some pretty bad flares. I had to give up caffeine, gluten, drinking, and it seemed allloved, including sweets. I’m not flaring now so am able to have a cup of green tea a day and ONCE inawhile some wine or gluten-free beer. I try to follow the scd diet, which helps me a lot. It doesn’t help everyone because not everyone has the same blood type. There are different diets out there for different blood types. The discoverer of this Dr. D’Adamo. You’ll find on theis site there are many different things that work for some but not for others. The most important thing is for you to find out what meds work,get into remission, get off meds and try natural products. Everything we eat goes through our digestive system, of course, so it makes sense to watch what we put down our throats. For instance, food-wise, I can’t eat eggplant, cabbage, or stewed prunes (lol), as examples. Yes, it’s hard, but hang in there and keep us informed on how you’re doing and good luck! My blood type is O, which is perfect for the scd diet.
Hey Dave…you’ve made it to the right place. Tons of great people and info. It sounds like you are already off to a great New Year start with natural remedies and diet. Look into the SCD…the science makes sense.
You have a great positive attitude and spirit.
Type in “Country Colitis Bob” up top and give that a view…one of Adam’s latest and greatest videos!
I too used to party hard and I was also a pretty active DJ for raves in the early 2000’s. I swear all that partying caught up to me in the end, because here I am stuck with UC and feeling low on energy.
I decided to go SCD and I take Omega 3’s and vitamin D daily. I was doing awesome for a while, but then I recently dropped off that trend and have been battling UC once again. If you decide to go SCD….DOn’t give up and be very strict with yourself. Don’t be persuaded by illegal foods and stay determined. You will probably see an improvement. I’ve been better ever since.
I would suggest staying away from partying and totally stay away from drinking and any other toxic thing. The gut is one of the most important parts of the body. It dictates how strong or weak your immunity is. Matter fact….it’s about 80% of your immunity. So if that’s not in check, then the rest of you is really not in check.
There are some fun things in life that you may have to give up. Your social life might die, some of your fun times and exiting parts of your day to day life might die, but what you have to be centered on, is that YOU don’t die. So YOu come first and your health comes first. It that means giving fun aspects of your life, then that’s the sacrifice you have to make. I miss beer so damn much and I miss drinking but I know I’m not missing out on much if that adds some days to my life.
Be strong and when your having a bad day, spin those decks and break out the beats! I like to produce electronic beats in my spare time. Gotta stay content sometimes….and if you can’t be realy social…..then take advantage of being solo! Make beats, play some video games, watch some good comedy films and spin those records right round!
I’m in Buckinghamshire, I don’t have anyone really local with UC but a close friend of my husbands family does and a friend of my sisters has chrons. I kept a food diary and realised in June gluten is a sure fire bleeder for me, lactose seems ok (watching it) I’ve been on a very limited diet of white meat/fish, potatoes, rice, gluten free pasta and bananas, yogurt, avocado, carrot and courgette! These have been literally all I can eat since June. I find I can tolerate 1-2 slices of GF bread if I have no other carb that day.
Basically I have got a yog maker and have scd yog for breakfast with honey and a banana or a smoothie with those and added blueberries this week with no ill effects :-)
I then have chicken broth or similar (no carbs) for lunch
Then for dinner a safe meal is trout and GF pasta or jacket potato without eating the skin and cheese (cheddar)
I can’t do caffeine at all or fizz, or squash. Cranberry, pomegranate juices are ok and I live off mint tea! I’ve only had one scope so far and my gi said once in 5 years at first is normal. I’m expecting one soon though as I only had a flexi sig in aug and he said he didn’t see the last bit and wants a look though he was convinced I had pancolitis.
I’ve found Christmas ok food and party wise- as a student I drank a lot and partied HARD, now I have kids and I’ve been so sick everyone seems to not notice I don’t drink anymore and it’s fine. It’s the mental will I be ok when I’m out I get anxious about but I think pred isn’t helping that. The pentasa is amazing at the moment and I will get off pred ASAP just got to get taper right. I hate all the meds but I can think straight again and I’m giving the probiotics, lglutamine etc a chance to start working. I don’t think anything was staying in my system long enough before :-)
Take care x
I have been on remicade since july. this last round (my fifth) took longer to kick in (about 12 days)so my prednisone got bumped back up to 15mg from 10 for a little while. but maybe because of the christmas stressing. have reduced pred to 11.25 mg. my doctor always does it by 2.5 mg reductions and i go with 1.25 and feel less of a reaction. I have only been able to work part time light duty for the past 6 months so now I am going back to a 8 hour workday next week and hope to get back to full time full duty by next month. My GI doctor wants me to have another colonoscopy before he authorizes that since I still have blood/mucus sometimes. (before this he would order them annually) I have had UC for 12 years. used to get scoped every two years before I turned 50 and started having regular bad flares, he says menopause also causing this. He thinks the blood now could maybe be hemorrhoids and ibs also contributing. I sort of watch my diet, try to avoid spices and am lactose intolerant but have been drinking a glass or 2 of red wine since home for the holidays. Don’t see any difference when I do drink unless i go overboard. I don’t drink beer or hard liquor. I plan to watch my diet more carefully and thinking of beefing up my probiotics, currently taking 8 bill/day but the naturopathic says i need to get up to 100 billion. feeling a lot better but theres always room for improvement. I think the frequency of BM’s has lessened pretty significantly but the urgency is improved but still there when I gotta go. I am wishing all us UC sufferers a healthier and happier New YEar
Yes, up those probiotics!! At least 50 billion for we UCers, but 100 sounds better still. You will be surprised what they can do…I am in total remission, I think, due to probiotics.
No meds at all!
Hey Dave! My name is Kyle and I’m also a young guy (20 years old) dealing, or recovering, from the horrible disease of UC. My father is actually a DJ here in the states, so I grew up around music and I have found it to be the best medicine when you are down. Before I go on, I first want to definitely recommend getting in touch with your GI doctor and having another colonoscopy. You can never be too sure what exactly is going on in there. Anyway, I was diagnosed in 2010 and I had horrible symptoms-bleeding, abdominal pain, urgency and many accidents. But although I was going to the bathroom quite often, I still managed to keep a pretty normal social and physical life. However recently my symptoms got much worse and I found myself as a hermit, like you mentioned. I never wanted to go out and do anything, never wanted to date due to embarassment, the whole 9 yards. The only medication that had worked for me was prednisone, which is very dangerous and unhealthy to be on, so I ended up having my colon removed surgically and now I am disease free. I am only 3 weeks out of surgery so I am still recovering, but the mental and emotional difference I already feel is AMAZING. Surgery is a huge step for any colitis patient and it is not for everyone, but I know for me, it has helped me feel reborn again and like ive been given a second chance at life. I want to go out more and date and the best part is- I don’t need to worry about where the nearest bathroom is! So that’s my story, but if you’re looking to get back into remission without surgery, my advice is to make some sacrifices in your diet because your health must come first above everything else. If you do not have your health, you have nothing. I would say cut down on the alcohol, fried foods and anything else you may have noticed bothers you. Maybe start an exercise regimen and I think soon enough you’ll be on the right track again. Best of luck to you!
thank you everyone for your replies. Sorry I haven’t been on here much, I had a few ok days where things felt like they were settling and then last night was pretty bad again. Constant feeling of needing to go and then just blood and mucus when I did. :(
I have pretty much stopped drinking at the moment, had one glass of wine the other day but now thinking even that may be too much. I have totally cut out wheat and dairy and friend foods and am keeping a daily food diary but it’s hard to pinpoint what exactly is causing the problems. I actually have had the best diet ever for the last few days but still the flare persists.
I went for quite long walk yesterday as I thought excerise would help but I was soooooooooooooooooooo tired at the end of it.
hmmm, in response to Bev, how long did it take for your combination of probiotics/glutamine/astaxanthin to kick in? I am now on all of them as per your recomendation….
sorry I haven’t replied to you all directly, I will try and do this but I’m just so unbleieveably tired at the moment so forgive me
Actually, I felt the effects of the probiotics pretty fast…but it matters when you take them. First thing when you get up, empty stomach, and then no food for an hour. If you have to, get up at 4 or 5 and swallow it then. It has to be at least 50 bllion, or more is even better.
The L-glutamine, which I started about a month after the probiotic because the blood was still happening, took only two days to get rid of the bleeding. You can take up to 8 scoops of it, if needed, but I only took one scoop. Up it if you need to for a few days maybe, if you are still bleeding. After the bleeding stops, you can cut it way back.
Sorry to not be more clear…I felt the effects of the probiotc within DAYS…like four, maybe. The UC symptoms all started to disappear, except that bleeding. Then, I added the glutamine!
fried foods not friend foods haha, I have never been a cannibal
Hi Dave –
try being a carnivore though – at least it works for me. I always felt the SCD did not go far enough. I would never go through a full blown flare with almond flour or honey but still they never made me feel 100% right. I still eat berries, grapes and oranges, but otherwise just meat and lactose free dairy. Try it out. Also if you are worried about the health effects of this diet just watch the video below. Dr weil endorses this guy (Gary Taubes) and I respect and trust Dr. Weil:
Yo Big Dave,
hey man, I was just checking out your story again, and have to give you the prize for the most hardcore-looking UC’er/ Music guy on the site! love the pictures, and I hope this week is going well for you bud.
I’ve been seeing a dietician for 6 to 8 months now, and only now has my gut transformed and started to heal more. You don’t necessarily have to go on a diet, you just have to cut out the things that irritate the bowel. For example, lettace even irritates the bowel because it doesn’t digest well in the gut.
Once you’ve found that main thing that hurts your gut the most, the other stuff gets introduced again slowly and food options are not so much a hard thing to conquer.
The main thing that irritates me is caffinated tea, so now i just have decaf, and to me it tastes the same :)
Having a dietican at first can be difficult, but it gets easier… i promise, and you feel so much happier.
Good luck, i hope this helps :)
Sammy, thanks a lot for that and so happy to hear that you are doing well. There is actually a dieticien visiting my local heath food store soon so I will go and see her. I have been keeping a food diary but I just find it a bit daunting at the moment and difficult to ascertain what is acutally causing the problems. Does the food i eat have an instant effect, or if eat something that is not good for me, will the effects only be seen after a few hours or indeed the next day? not knowing the answer to this makes it difficult for me to pinpoint what the problem foods are
Sorry again to everyone on here for my lack of responses, I have been really depressed the last couple of days and actually just broke down a little and cried for the first time about it all so this is really helping me to come and write something on here
Hey Alison – hows things going with the Pred? I take it you are just gonna try and remain drug free after the course?
Maggie and Shelly – thanks for the info ladies – I had no idea that blood type had any bearings on things, I will certainly look into this next. I read a lot of people saying you have to follow the SCD diet to the letter to have it work? is this correct or does every little help?
Hey Trev – I’d love to hear some of your beats, maybe we can swap some music? :) I realise what you are saying but it has been really hard withdrawing from the lifestyle I have known and lived for so many years, guess you really start to see who your true friends are. It’s so weird realising that the only thing you have in common with some people is drinking and being crazy
Hey Jen – how long have you been on pentasa? have you had any side effects from it? Do you think your partying lifestyle could have been a cause of the UC? hope you are feeling better anyhow miss
Hi Jenn, let me know how things go if you up the probiotics, I have been on 50 billion critical care ones for a few days alongside the glutamine and antioxidents, still got blood and mucus at the moment though so praying that these things ckick in and do the business
Kyle – what a buzz it is to hear that you have found a new lease of life, that is so so cool to hear. I want to avoid surgery myself but it’s great to hear that it worked for you and you are feeling happy, I am very happy for you dude :)
Hey chris, cheers for your message, you just battling the old UC diet wise then? and feeling good right now? HOpe so!!
I’ve had UC for over five years now, it will get you depressed and down in the dumps with your thoughts and how it stops you from living your life, but once you find what irritates you the most, honestly your gut will eventually heal.
I’m on here, on page 28-30 somewhere and my main title is ‘I have a question that needs to be answered’. When i joined i wanted to find out about having the bag put on the side or have some sort of operation done to make it better, but i found the main foods and drink that irritate me and now i don’t have to go down that road. I feel so happy and lucky because it was controlling my life and i hated this poxy nightmare for it. Life for me now, is a huge, HUGE step forward and my life is about going out, meeting new people and living my life and i love it :)
So don’t give up, be strong. Go see your dietician and make yourself happy again.
Don’t know if you’ll be interested in this but i have a blog about a my biography and it has my first chapter on there. I haven’t published it yet but trying to. Check it out when you have the chance, its:
Good luck with it all :)
From sammy x
Hey man, I hear you. I deserted a lot of those unhealthy friends many years ago and now I have just a few people I’m in contact with. I also have a kid and a good women that supports me.
You can check out some of my production at https://soundcloud.com/twind78
I never have time to make beats now…which really sucks….my kid takes up all my time!
Give me a shout through soundcloud!
PS. Adam!! what an accolade! Can I get a certificate please :) you just put a cheshire cat smile on my face haha :) thanks dude you legend!
The prednisone is kind of a miracle at the moment…. I know it is only temporary but I’ll take it for now. The doc prescribed Lialda but I don’t want to be on a maintenance drug and the side effects look so super SCARY. So, I’ll try my 6 weeks of this and then do the allergy/intolerance testing and go on my own custom diet. I FEEL THIS IS my best path at the moment.
For now, I have energy and a hearty appetite. I need to regain 20 pounds so I am just enjoying eating good healthy food. I forgot how good it felt to feel normal (and i know this isn’t even my normal).
All the best- I’ll keep you all updated on my progress.
glad the prednisone is making you feel better, but the side affects are bad with that too. I was on 40 mg for 2 months then started to taper slowly, but in the fourth month I developed central serous coroidopothy, it’s like having a black dot in the middle of your vision. It can be laser treated or it can sometimes go away on its own. Mine went away after a few months. It makes driving a little difficult because your sense of depth perception is affected. I also developed some kind of problem with my hearing that can’t be diagnosed. Also after being off the prednisone,I had to go back on it til I started remicade. Can;t wait til i am off it completely and finally. Recently had a dexa scan for bone density and found that i have osteoporosis now.
please get more than the daily dose of calcium and vitamin d3 to help absorb i]t. good health to you .
Hi Allison – Have you tried warm salt water enemas for your constipation? – They work wonders for me. About three quarts in the morning cleans me right out for the whole day.
I have not ventured into the world of enemas… I just feel I am trying to get on at the exit ramp. Hah!
i suppose I should give them a try though.
Is there a certain type of bag you use, what type and how much salt and do you boil the water first?
3 quarts consecutively???
I am no prude but enemas are uncharted territory for me, so please be as graphic as necessary.
I am just afraid enemas will make my colon even lazier than it is. I wish my body would just do its thing… ugh!
I have been walking 3 times a day… trying to tap into my colons potential energy (WAKE UP) and subsequent INERTIA. Didn’t Newton say a body in motion stays in motion?
Thanks for the advice- I do need to consider my options.
Hi Allison – I tried replying to your question that night that you replied to mine – It is still in Moderation. I wrote to Adam about it and have not heard back. I am so sorry that it took so long. I still have the response I will try to repost it. If you do not see it by the end of today just email me and I will send it via email =)
Funny thing about UC…it drags you down but then turns you into a fighter. There are no quick fixes and it is not a one size fits all disease so keep trying and figuring stuff out about diet and herbs, etc. The journal is awesome make sure you’re including details about bm’s, too. Perhaps times between foods and bm’s. I find that finding the troublesome foods to be a very difficult process and yes, sometimes with our wonderful systems it gets hard to determine.
There is a great site…pecanbread.com-stages…I think Adam has that somewhere on his links that helps with the SCD stages. I found this helpful in acting like sort of the elimination type diet. I am new to the SCD…about 3 months, prescription strength vsl #3 probiotics, omegas, vit d, some new herbs from my chiro….I’ve been in this for 30+ years and am all out of meds, been med free for iver a year and a half in my secnd flare…so I have nothing to lose….except my colon at this point!! :-)
So….hang in there…UC is a war with lots of battles…so get your game on! Best, Shelly
P.S. Don’t forget to watch Adam’s video I told you about….country colitis Bob…you’ll love it! :-)
I think diet is the key. Its all about improving Gut flora to improve your digestive system and calm down your overactive immune system. I think there is success to be found in a lot of the diet ‘regimes’ out there but you have to give it 100% commitment and give it a fair go – at least a couple of months.
With regards to Probiotics, I haven’t tried this yet but I’ve heard that you can make yoghurt using uht milk and a commercial probiotic as the starter culture e.g. Vsl#3 (1 sachet per pint of milk). This way you get good bacteria numbers up into the trillions!
Good luck with your healing.
Hey Sammy, I love the positivity that shines through your chapter despite all the hard times you have experienced. I want to go belly dancing with your aunt Rosie! was it honestly just tea and coffee that was cuasing you problems? and now you have cut them out you are totally fine? that’s crazy? what is the rest of your diet like? do you take supplements or anything? it’s so good to hear about your amazing recovery :)
I am writing down literally everything now, it helps me feel more in control that’s for sure. i write times of when I eat and drink, when i take my supplements and when i use the bathroom. the only thing that still confuses me is how long it takes for foods to have an effect, say i feel weird in the evening, as i did last night – realllllllly unsettled, is this becuase of something i just eat earlier in the day, or could it even be from something i had the day before? i really don’t know which makes it diffuclt to ascertain what to cut out. So thanks Shelly I will defintely check out pecanbread.com. you are certainly right about it being a war with many battles. Are you winning currently? I really hope so
I love how we have all come together and created a UC Army.
WE WILL BEAT THIS F**@ING DISEASE AND IT WILL RISE NO MORE!! haha. I am actually anti-war but like the idea of a war against UC :)
Has anyone ever tried taking two (or more) different types of probiotic, but on alternate days? wondered if this would be a good idea or not and thinking of buying another one so on one day I have the 50 billion Ultimate Flora Critical Care ones then the next day a different one, then back to the critical care the next day and so on?
Hey Mike, what is your diet regime? Generally I am stripping down my diet to only eat “real” things that I recognise all of the ingredients of, i have scrapped everything with freaky sounding stuff included but realising how much of a mine field it is, i had never looked at ingrediaents before, WHAT THE HELL IS HALF OF THIS STUFF!!! I thought I had done well buying rice milk but then i looked on the side of the packet and honestly don’t have a clue what half of the stuff is that is in there so thinking i should cut that out now also
i just hope that all this effort fully pays off, at the moment I am so up and down, I keep feeling like i may have cracked it and I’m feeling better but then i get a night like last night that makes me feel like I’m back at square one. Now I’m just trying to work out whether it was that pesky pepper I ate yesterday that did it, it was only a friendly yellow one and without the seeds, hmmm maybe it was the skin?! o well I will keep battling like all the rest of you good people
Allison – yes please do keep me updated and good luck. It was my last dose of prednisolone foam yesterday so I’m reallllllllly worried that now I am off it, the bad bad symptoms are going to come back so praying that my imprioved diet and supplemntaion is enough as I really don’t want to have to take any other drugs. if i really have to though, which would people say are the best of the bad bunch? or would you say just don’t bother with any?
much love to you all as always
Cant speak for anyone else – while probiotics helped they are not what ultimately was the answer for me. The answer for me was going Carnivore (straight up meat with nothing added – so I have to make my own – NO BACON.)
I also eat the below fruits (and lactose free dairy):
Most Kind to the Intestines:
Try it man it works.
If you are concerned with the health of this diet just look up Gary Taubes – he is the man. If you get constipated try warm salt-water enemas – they work wonders =)
Peace Bro =)
Hi Dave, that made me laugh when you said you wanted to take up belly dancing, thanks so much for reading, i like to here other peoples opinions and effects my stories have on others :)
The reason why you feel uncomfortable all the time (in my opinion) is because your not feeling relaxed in yourself. I remember for the first couple of years, i could never settle properly, my stomach would gurgle loudly and its like you can feel it move around, its horrible to say but true, kind of like your stomach has a mind of its own. Its even worse when your around others because your frightened that your stomach is going to set off.
I’m going to write a list for you that can not only help you relax… but what will make your stomach heal better okay :)
1) Drink plenty of water. Believe it or not, because we go to the loo so much, our bodies dehydrate and the effects are heavy headaches, aching bones, you name it, it will cause havoc. So drink lots and lots of water. I ALWAYS have a jug of water in my room to keep the system flowing.
2) Find a calming exercise to keep your mind off your stomach. I know its hard, but before i discovered what the problem was, my mind was constantly thinking things like ‘how far away am i from the loo?’ or if i went out anywhere, (even round peoples places i would ask or think ‘Wheres the nearest loo?’ and ‘where are the loo’s in peoples places?’
So the bestest thing i found was reading books, or doing breathing excercises and focusing on that. Can you believe, i even went into reading about Buddhism because they say that chanting for ten minutes a day (NAM MYO HO REN GHE KYO) helps a positive vibe into your system. I know it sounds crazy, but it helped my mind and my body and i feel great :)
3) You may not like this 3rd opinion, but its the one that works the best… ready???…
Cutting out alcohol will really help you heal better. I was lucky when i was told this, as i don’t really drink anyway but so many other people do and i know that this will be the hardest for them to cut out. Here are also another list of foods and drinks that can irritate the gut,
a) Fizzy drinks
b) caffinated tea or coffee (just replace it with decaf).
c) onions – try not to have too many, better yet, cut them out
d) Skins on food – jacket potato, tomatoes, cucumbers, baked beans, sweetcorn, chicken skin etc.
e) seeds in foods, they don’t digest so try not to eat tomato seeds etc
f) Peanuts and heavy crisps – try and eat easily dissolvable crisps like wotsits or skips (yummy, my favourite)
g) freshly squeezed juices,the strong citrus hurts the gut, try light squashes that you add water to.
h) try and cut out fatty bits on meat, like steaks or bacon before cooking. When we cook these foods, they sink into the meats and it can play havoc on our gut. So just cut it off before cooking these foods.
i) In a chiili con carni, don’t eat the kidney beans, trust me on this one.
Now for the stuff you can eat…
a) pretty much everything on a roast dinner – roast potatoes and parsnips, carrots, brocolli, yorkshire pud, beef/ lamb/ pork, stuffing, sweed, and gravy. God bless a roast, i never get tired of having a roast.
d) curry, just don’t have anything too spicy, your gut won’t like you for that either)
e) sausages (bangers and mash and bit of veg with gravy)
f) Chicken soup and bread rolls (certain soups can have an effect on you, tomato soup doesn’t agree with me, so write a list of what you do and don’t get on with)
g) white bread, no granual bread.
h) cereals like rice krispies, oooh and porridge with vanilla soya and your fav jam in the middle (may not sound all that, but its lovely).
There are so many other good foods for us and meals, you just have to write down with what agrees with you and what doesn’t. But don’t think that you have to go without certain foods or drink forever because i still have the occasional drink or fizzy drink, when you don’t have them for a while, they taste great and you learn to really appreciate that.
Well i hope this helps you, my hand is about to drop off lol (from writing so much)
Have a good day, from Sammy
I was diagnosed with UC 2 days ago after a colonoscopy – tho I’d already worked out what was wrong with me in May by checking my symptoms on the internet. Very angry and upset at the moment and don’t know what to do. I’ve always believed in taking control of my own health, but I don’t know where to start with this.
Not had any symptoms for 6 weeks but I’m on edge waiting for them to come back. My boyfriend is the only person who knows I have this and he has no clue how serious it is. At the hospital I was given minimal info after the bum-camera procedure and I couldn’t concentrate as I was off my face on the sedative. I have no idea who can help me with this or what I can do to help myself. Of course I’ve looked on the internet but advice varies and I’m feeling overwhelmed. Any simple practical advice would be appreciated.