Intro:
I’m Teddy and I am 27 just recently diagnosed with mild ulcerative colitis. First issue I have ever had with my health and it is hitting me hard. I’m from Illinois.
Symptoms:
Had two bouts of minor bleeding on stool with two bouts of cramps after the bleeding started. Currently after being diagnosed a week ago bleeding is gone and only minor cramping
Teddy’s Story:
I am new to this disease/site and while it has been very helpful it also has given me horrible anxiety. I don’t have most of the symptoms most people have and that scares me that my anxiety is that bad now I can’t even imagine what it will be when this gets worse. I have basically been reading non stop in multiple forums and that only proceeds to freak me out more.
My question is there people out there that only have minor flare ups and the disease stays minor through out or does it always get worse? All I can find is the horror stories and I feel so much for the worst cases as I couldn’t even imagine. I know I am in for the long haul but I am trying to look for some kind of hope or at least something to calm down the anxiety. I recently lost my 24 year old brother to a brain disease still hasn’t been diagnosed. All that adding up I feel like my life is over already because I know this can get worse any day now.
I know many started off on this disease way worse than me and have it way worse now and I can’t believe how strong some of you are. That is something I truly admire. Just combing through all these stories and different forums I can not seem to find very long remissions, minor flares or people that this barely effects. I know if they are out there they usually are not using the forums but anything positive would be appreciated so much.
Currently take 2 Lialda in morning and 1 Canasa suppository at night. I take bosweilla extract, fish oil, vitamin d3, probitoic, and magnesium. Bleeding stopped day after starting the Canasa suppository.
written by Teddy L
submitted in the colitis venting area
I’m Teddy and I am 27 just recently diagnosed with mild ulcerative colitis.
Hey Teddy,
Thanks for sharing, and condolences to you and your family regarding your brother’s passing.
You have some great questions regarding mild UC, and the reality is that there are MANY many folks with UC who have mild symptoms for the majority if not entire rest of their life post diagnosis. It for sure does happen and it’s not that rare actually.
You can go down to the bottom of any page on the site and use the high powered “Google search box” to search a term like “mild UC” if you like and it will bring back many results.
But here is a link that you should check out, it was posted not too long ago with some interesting comments from others that I think you’ll appreciate.
Here’s a quote from within the post:
“Since being diagnosed with this awful condition (although I’m a mild case) I have become a nervous wreck and can’t look or plan more than 1 day ahead of myself.”
And here’s the link to it:
https://ihaveuc.com/mild-uc-surgery-and-uncertainty/
Hang in there Teddy, I think that with a little bit of time, you’ll be able to wrap your head around the UC, and start moving forward without all the mental setbacks that are happening right now. Accepting the fact that we have this kinda strange disease is probably just as hard as anything else that comes along the way. So for sure don’t feel like you’re some odd ball in having a hard time with the “right after diagnosis period”…cause you’re not:)
Take care, and I hope you’ll write an update in a few more months with how you’re doing,
Adam
Hi Teddy, I can relate to how you are feeling. I have also had a mild case for 2 years. I do not have “flares”, just constant minor bleeding and mucus. I also live in fear of it getting worse. I took the same meds as you for the first 6 months and saw no difference. Now I just try and do my best with natural treatments. It has not gotten worse at this point. Over time I have gotten better with the anxiety. Good luck to you.
Julie, Have you stopped the meds? What natural treatments do you do? Hows your diet?
Teddy, i am 30 and when i was 24 i suffered for about a year with the blood and frequent bathroom trips. I finally ended up getting the colonoscopy and GI guy told me i have UC and prescribed asacol. i took it for a while and decided to throw it away because my insurance ran out and i figured i would have to find another way. i cut sugar out of my diet for two months and UC went into remission. i didn’t know it was in remission because i honestly didn’t google or read up on this at all, i felt better and continued to be happy. at age 28 i have dental work and they prescribed clindamycin. UC came back and i did my research. it all made sense after that. my first flare up was after i had my wisdom teeth pulled at age 24, then my root canal at 28. i cut caffeine a nd sugar… alcohol i cut at 23. anyway, after i do this my flare ups only last a week. had a week flare up a month ago and it was only a week. i have a colonoscopy in 5 days to see how it is going but it hasnt ruined my life so far. i keep track of what foods i ate when i start feeling stomach pain and avoid those foods. hope this helps and gives you hope. stress and anxiety might even make things worse. all the best
i guess what i am saying is that antibiotics bring on the flare ups and i adjust my diet and that works for me
Yes, I have been off meds for a year. For the first nine months, I did very well following the paleo diet (but without nuts). I was symptom free 80-90% of the time and if I did have a slight flare up, I would do the paleo auto immune protocol for a week and be back to normal (you can Google that for more info). Then at Thanksgiving and Christmas I gorged on a bunch of bad food and I been having daily symptoms again since Christmas. This time the diet isn’t working to end the blood and mucus. I have lately tried some natural things like colloidal silver enemas (see Marine’s story) extra virgin olive oil (see Graham’s story) and just today started wild oregano oil (also suggested by Marine). The symptoms are about what they were when my U.C first started so at least it’s not getting worse. It’s just that I can’t get this latest flare up to stop with diet alone. I will keep searching and experimenting though.
Teddy
80% of all UC cases are classified as “mild” and the majority don’t make it to this site let alone post anything so don’t take the worst case scenarios as being a true mirror of the wide spectrum of cases.
You say you are anxious that your mild case will progress and get worse. If this statement is true i would advise against stopping your meds and continue on the path that is clearly working for you and has been designed by a professional.
Stick with what is working for you and chances are, you’ll be fine
Tom, where is that figure from? I am only anxious because I do not want to give up everything I eat. Just the way people post one false meal will put you into a huge flare.
Teddy
I apologise it’s actually 54% have a mild case and 27% moderate and 19% severe. That’s where i got it from. http://www.livescience.com/40309-ulcerative-colitis.html
Moderate in this instance refers to Left sided colitis, mild being proctosigmoiditis and severe being pancolitis (that’s what I had)
What was your diagnosis? as in the location of the inflammation?
Regardless of what people profess to know or have experienced, if your immune systems response is going to cause a flare up at a certain point, it doesn’t matter in the slightest what you eat. It’s human nature to link an effect to a cause, but most of the time, that cause is just bad luck and not, milk in your coffee, rubbish food at christmas or whatever else.
my flares have been infrequent, but bad when I’ve had them. Some people I know with UC have bad only minor flares. Lialda kept me flare free for almost three years until i needed to stop taking it for a weird side effect. One thing I have learned about this disease is that you never know when it’s going to rear its ugly head, but thankfully there are many medications that can keep you asymptomatic.
Hi Tom, firstly you have to stop being anxious as it will only add to the problem. I have had UC now for 6 years, and I know it is very hard to deal with but anxiety and stress will certainally bring it on. I was doing fine with just manageable flares until mid last year when my husband was diagnosed with uncurable lung cancer, well UCers need not have to get this news as bang away it goes again. With me, I loathe taking medication and if I can get away with it I will, but whatever you decide on that helps your UC, KEEP TAKING IT. My problem has been going off the cure too soon and any kind of a shock will waken it. I think I have learnt my lessen for 2 days now I am feeling much better.
Keep calm, take something to calm yourself please.
Good luck it can get better, but not forever it will still be there lurking in the background.
Shirley
I wouldn’t worry about it mate. My brother had the same and it just went away. He is now on no meds and is “normal”. I’d advise just getting the colonoscopy every so often as doctor recommends to keep an eye on it. The odd blood test for full blood count, CRP, and ESR will also help keeps tabs on it.
Cheers,
Peter
Teddy,
It is understandable that you are anxious, I think that even before diagnosis many of us were already this way. A likely connection, the constant state of “fight or flight” is not good for proper digestion or the operation of our immune system. Stress certainly does not help this condition, it is right to search for the answers but this also adds to it in my opinion.
I always ignored stress and carried on like a machine, then I had an autoimmune complication and inflammation of the spinal cord. I then got serious anxiety which I still struggle with, mainly because I cant handle anything like the workload I used to.
My neurologist told me that in order to avoid a relapse, my priority should be to deal with stress and change my lifestyle. Not easy to do but I’ve made some steps forward. Sorry if these are obvious but a few things I do.
Limit coffee and stimulants.
Keep a to do list (instead of trying to remember everything then feeling stressed because you forgot)
Be selfish about your health, you and your dependents need you as well as you can be.
Try pipe breathing, its simple yet pretty effective.
Valerian root, naturally calming (I use in emergencies).
If you cant sit still and rest at least do something that is voluntary, sport, gardening..
I am about to try Yoga.
Reduce social media interuptions.
I love politics and current affairs but music only when stressed.
Always try and identify a positive (no matter how small) from any bad or stress situation.
You will get there but it takes time, best of luck.
I will chime in here and say that a lot of UC stories DO sound like ‘horror’ stories to read, however, when you’re actually going through them, you always do get through them. Does that make sense?
I have read UC stories on here a lot worse than my own, and some a lot more minor than mine. I do know now, though, that if things get worse, I (we) will just deal.
You will too, Teddy. We all get through these things and so will you! We are not all the same and sometimes, you will only have mild symptoms forever.
Cheers
Teddy,
Can’t agree with Bev more, YOU will get thru all this and come out on top. Some excellent suggestions from Graham in the UK too, definitely give his comment a re-read from time to time.
Hi Teddy,
I am 20 and was diagnosed 6 months ago, also a mild case of UC.
I drastically changed my diet, following the GAPS diet for a while (which is hard) but within the first two day all symptoms went away and I was ‘normal’ for about 5 months, the surgeon even said the amount of bowel my UC was affecting had reduced! I started eating really bad again, and have had one flare up, but by simply starting my meds and eating a plain diet again from the GAPS, I have it all under control again.
Changing your diet works wonders, and almost instantly. It gave me my em every back as well as confidence as I don’t need the bathroom 500 times a day. I suggest keeping a food diary, writing down everything you eat, and a reaction. That way you’ll know what works for you. When I’m not in a flare, I eat fairly normal things. I just find my bleeding stays away if I eat a gluten free diet.
Don’t worry, this can get better and you’ll work out how it does for yourself as we are all different. For a nice quick relief though, try altering your diet slightly!
Thanks for all the responses everyone it has helped. Peter what type was your brother diagnosed with and how long ago?
Hi Teddy
I too was diagnosed with mild UC. Symptom was occasional slight bleeding once in a while. Diagnosed during a routine annual executive check up last December 2013. The occasional bleeding was first diagnosed as hemorrhoids. A month after colonoscopy I had some blood in stool and doctor gave me prednisone and salofalk. After 3 months I repeated the colonoscopy and doctor said it’s gone I gone but I have to continue the salofalk. However I had more episodes of bleeding last year -around 7 times last year. And each time would last 3-5 days before it disappears. Worst than once a year and just last for a day before I took the meds. I research the salofalk and found it causes bleeding. I stoped it last october and so far its been ok except for the daily anxiety especially whenever I go to the toilet in the morning. I just have the norma1-2 movements a day.
I am now just taking C-Lium fibre and Normagut probiotics daily.
Take it easy. Just feel yourself and monitor your food intake. In this site you will surely feel better and know more.
Jess C
Jess thanks for that post. Any other symptoms and you are on no meds?
Dear Teddy,
My condolences on your diagnosis. My congratulations on joining this site! Please stay calm as stress may only make you feel worse. The good news is that you began treatment already and your symptoms are “mild” and improving. Stay positve. Stay connected to this wonderful group. I’m not the most positve person but I just had to reach out to you. It will get better. You may never know the degree of suffering some of us experience. I sure hope not! My dr told me to take Benadryl when I start freaking out. It’s cheap($.88@walmart for 36 pills) and it helps me. Relax. At LEAST now you know whatever bleeding/pain you had doesn’t mean you are about to die! Hang in there and remember that just because others may be having WAY worse symptoms than you were doesn’t mean that YOU will.
Teddy
I did respond with some factual information but my comment has been awaiting moderation for 24 hours. go figure.
What you are seeing in the comments is not the full picture.
Tom I was diagnosed with ulcerative proctitis and a patch of inflammation in the cecum
Hi Teddy,
I am sorry about the loss of your brother. My heart goes out to you.
As others have posted here stress can affect our entire body in so many ways.
Here is a link to a site that has a good explanation of relaxation response, diaphragmatic breathing and visualization training (don’t be put off by the name of the site – this is good, solid training that everyone can use daily).
http://www.allaboutdepression.com/relax/index.html
I suggest that you practice these exercises when you are not stressed so when stress does hit, you will feel confident that you know what you are doing (no different than practicing pitching before pitching in an actual game – muscle memory). These exercises will not make stress go away but will reduce your level of stress and contribute to your overall health. If you find that you cannot do this on your own please consider finding a good counselor that specializes in anxiety who can guide you in a variety of relaxation exercises. It may pay off for the rest of your life!
Adam has provided us with a great place for support, and knowledge about our illness. I have learned a great deal from our fellow UC’ers who have mild to severe UC.!
Joanne
I would have to disagree with Tom on this one. There are a number of causes and flares dont often appear from nowhere. Milk in the coffee is just a perfect example that Would cause a flare. If you want to go the natural approach scd paleo or gaps is your ticket.
Its what your eating that causes most of your flares. Certain food harbors bad bacteria and others dont. Its all about finding a balance for the gut flora. Many of the “professionals” will not tell you this because they are simply not taught it. Prescription drugs merely suppress the immunity and eventually cause additional health problems.
T-dub
Is it the food actually physically passing through the colon that causes a flare or just the simple ingestion of said foods and therefore indirect?
GREAT POST T-DUB!!
Could not agree more!
Actually I really LIKE the part where you say ‘prescription drugs MERELY suppress the immune system and eventually cause additional health problems’…!!!! YES!!!
Does anyone really understand the gravity of this??? Treating any so called autoimmune condition by suppressing said immune system is actually quite LUDICOUS! And desarate, I might add… I’ve never agreed with it even in response to cancer. It simply makes no sense…short term gain (MAYBE) for long term health destruction…I don’t think so.
IMMUNE SYSTEM SUPPRESSION….I run the other way when some doctor even hints at it.
That’s why I have never been able to get on the biologic train. Absolutely ridiculous!
Sorry, all…I think this is my biggest pet peeve.
That was LUDICROUS….sorry for the typo…
Too hyped up again and typing much too fast
Desparate…so sorry
Bev
IBD is without a doubt an Autoimmune condition so i’m not sure what you are hinting at when you say “so called”
To say you don’t think immune suppressants should be used for cancer is ludicrous.
Most would argue that by not taking medication you are almost guaranteed to cause long term health problems such as bowel cancer, toxic megacolon and in some cases death.
I’m not saying probiotics or diet don’t help some people, but look at any medical journal investigating prescription drugs and there are usually 10% of the control group given placebos that go into long term remission. Until evidence to show that diet or alternative therapies exceed a 10% success rate I don’t buy it that it’s not just pure luck and not a dangerous route to commit to when not used in addition to prescription meds, which have been medically proven to work in the majority of cases, i’d like to add.
I do hear you Tom…and I know that UC is classified autoimmune…what I meant by ‘so called’ is that these conditions are deemed autoimmune at all. I mean, who came up with that name? Just a term I believe, for things that are caused by who knows what. That’s all I am saying. If there is such a thing as autoimmune (a trite terminology), then I guess that is where UC belongs…in that ‘class’ of ‘diseases’…
As to immune suppressors…I still don’t agree. Yet again, another class of ‘wonder dreugs’ used to beat back bad things at our healths’ peril. I will never be convinced that that is a good way to treat cancer, either. Perhaps one of ‘all we have’ drugs…but not a good idea in the long term.
We’ll see what the next 50 years brings…
Tom, there is plenty of evidence. There are a slew of people med free and on diets that have assisted their immunity and given them a semi normal life back. There was a recent report made mainstream by the medical establishment that yes, ibd is an inbalance of bad bacteria in the gut. What they wont tell you is the foods that contribute to bad bateria. You will never see diet in medical journals because it simply doesn’t make money. If people could heal without meds there would be no money made.
Chemo is a cocktail of poisons. I think we can all agree on that. It kills the tip of the iceberg while destroying good cells (immunity). Radiation is poisonous. I think we can all agree on that too. Radiation also kills the tip of the iceberg while destroying good cells.
Both therapies do not assist the immunity. Both therapies in my humble opinion are cancerous. Cancerous meds to fight cancer is an unusual approach to fight disease.
Thats not to say conventional medicine doesnt have its place. I needed it once because i caught a horrible flu which caused an out of control flare. It saved my life. Diet did not help me in that situation but that doesnt mean i will stay on them.
Let me know if you dont think radiation is poisonous as welll as chemo because i woul be interested to hear your view on this.
OM…T-dub, I could not agree more with your post.
The meds used to ‘fight’ UC may be doing far more damage than the condition itself.
I’ve always thought the same…why use immune killing agents to help with anything? It simply makes no proper sense. Beat the immune system back to supposedly ‘kill’ the bad thing….I don’t think so.
Also, trying to put cancer in remission with said meds….really? Me thinks that a new approach is needed and fast…
I am living proof that the natural way can and does work. Off meds for over five years now and doing great on probiotics. I also believe in diet. There are so many foods that hurt us.
Thank you for your so very insightful and truthful post. Believe it.
Bev, there are many living proof IBD people on diets such as yourself who don’t get recognized by conventional medicine because you simply pose a threat to business. Meanwhile they have doctors trained to dismiss any medicine outside of their field and label you a quack if you even mention diet. In my opinion it is an extremely biased system we live under for health care.
That is not to say there aren’t bad sides to alternative medicine. As I mentioned to Tom, many vitamin companies have been bought out by “big pharma” and in my opinion whole foods is the best medicine. If it’s going to go into a local farmers pocket I’m ok with that. If it assists my immunity I personally find that far more beneficial than apposed to life long drugs.
What makes more money? You buying 500$ worth of drugs per month or you spending 40$ per month on vitamins and eating IBD friendly foods? I personally don’t believe real alternative medicine even has a small footprint compared to conventional. If you include the cost of healthcare forcibly taken from us in taxes and combine that with the cost of drugs, we are looking at a big number for profit
Precisely, T-dub.
It is a lot less expensive for me, as well. The drug companies are making nothing from me any more…lol. I take a certain comfort in that. I’m not sure why, really?
I am not a conspiracy theorist, nor a natural-loving alternative therapy hippie….BUT I do agree with it being all about money AND I do believe, now, in natural things helping our health!
I am a ‘new’ convert to a more natural way to help myself. I try not to proclaim such conversion too loud…a lot of people do not want to hear it nor believe it. At least I try in a small voice to just offer my experience.
I hear ya Bev, it’s difficult to convince everyone that alternatives work, but it’s certainly worth a try if they show you a slightly open window. It is all about money in the end and what product you buy that bares the highest quality and helps you the most.
Simply put, the choice is food, drugs, or vitamins. I think logically, food makes the most sense since it doesn’t have side effects and is not dangerous. Drugs claim more lives per year than most wars. So you make the comparison logically and you get a pretty straight forward answer.
I found that most people who tried diets and were not getting success, were doing the diets wrong. They did not follow the directions properly. For instance, I’m not sure if you’re familiar with the SCD but I recall one expert on the diet saying the people who said the diet didn’t work didn’t even know about the intro diet, which is KEY to success for SCD.
I think many people forget, or they simply don’t know, that doctors get kick backs and vacations for many of the drugs they prescribe so they have a great incentive to prescribe as many drugs as possible to as many patients as possible. Trusting your health with some of these guys (or many in my opinion) is much more dangerous than vitamins and food, but correct me if I’m wrong because if I compare drugs to food/vitamins and see reports of thousands dead from drugs and nobody dead from food and vitamins, I come to this conclusion. I’m I incorrect?
Yes! You are most definitely correct.
I always want to err (or make a mistake) on the natural side…it’s too big a price to pay on the med side.
That’s why I share me experience on this site. I hate to see people get hurt from meds and it happens a lot.
I just want to let them know what I have been through, and then they can decide for themselves.
That is not evidence, that is hearsay. You can’t say there are 10,000 people who have had success with diet so therefore it works when there are another 90,000 who tried and failed going the natural route.
Yes I agree chemo and radiation is posinous. However, it has been proven millions of times over that it does help people beat cancer and live for a long time. You can’t shrink a tumour by taking probiotics and changing your diet. Chemo is the lesser of two evils, not a saint.
The only thing that stopped my bowel from perforating when I was in hospital was IV Ciclosporin, an immunosupressant. Then I switched after a 3 month oral course to 6-MP which didn’t work 100%. I chose to have my colon removed and then later make my ostomy permanent, because I knew without a doubt that without hard drugs for the rest of my life my colon was going to kill me sooner or later. So i’m grateful for immunosuppressants because that was the only choice I had. As I was admitted how do you think it would have played out if I had refused those drugs and insisted on youghurt and probiotics.
You have to remember the global alternative medicine movement is a $115 billion a year industry and while on the surface it may seem you are doing the right thing by avoiding “big pharma”, you’re just slipping it into somebody elses pocket that quite frankly, doesn’t have your best interest at heart.
When you go to a Dr and he prescribes you 6MP or Remicade or other meds, it comes with a long list of possible side effects and outcomes are explained.
When somebody comes onto this site and you lot while thinking you are doing them a favour offer your advice, you don’t provide a list of dangers or problems so they don’t know what they may be risking. That is dangerous, potentially more dangerous than the meds you oppose.
That is something that I always am careful about…not advising people to go off all meds…I am not a doctor. No one thing seems to work for everyone. I do know, though, that in the long term, the meds can damage other parts of your body, which quite frankly, I don’t believe is worth it. I would rather lose my colon than poison my body. That’s just me. We lot are just discussing these things. In case it helps someone…anyone.
We lot are simply offering alternatives…a different approach, if the meds have made you completely ill and worse off, as they did with me.
No one is black and white on here, Tom. There is too much grey area.
So buying organic food from non factory farmers and making probiotic yogurt from local farmers milk is slipping money into another’s pocket? I will gladly contribute to that. Although I do Agree their are many vitamin companies being bought off by “big pharma” and quality is reduced. Alternative medicine has many pharma ownerships for extra bucks. Both are in it for the money, but the difference between the 2 is very drastic. You have conventional medicine suppressing the immunity and you have alternative medicine assisting it. In my view the better bang for the buck is obviously alternative.
I hear you on the conventional cancer treatments having success, but it’s not exactly the most efficient method since more lives are lost from the treatment itself, or the cancer comes back and the patient dies.
I feel for you concerning the colon removal. I have been pretty close to doing the same. Either approach to fight this disease doesn’t always work.
Tom, to my knowledge, I don’t think many vitamins or IBD friendly foods have much side effects other than possible gas or flatulence. As far as I know, I don’t see listed side effects labeled on the food i purchase at the grocery store. Vitamins do come in a bottle and do list possible side effects or at least cautions.
As for the method of diet to fight IBD. Nobody is pushing anyone else to go alternative. As I mentioned in my posts this is my personal opinion. People can take it as they may.
Bev
Very true. My next option was remicade and I opted for the colectomy.
I think there is a geographic aspect aswel. While i was consuming the equivalent of $1000 a month in meds i only ever had to pay less than the equivalent of $10 a month. I’m very grateful for the NHS for that. Having a chronic condition is stressful enough without having to worry about money aswel.
I hear that. It cost me almost $500 per month for all of the meds that I was on for 15 years, but thanks to my husband’s plan at work, we only had to pay 20% of that.
Good old Canada. We are pretty fortunate here, cost-wise medically.
Cheers:)
Hi Teddy,
I feel your pain! I also got diagnosed with ulcerative proctitis (just 20cm of my rectum affected) when I was 23. At first I really freaked out, and tried to research as much as possible because I wanted to know how it would affect me. Knowing seemed safer so I went crazy on forums and also got very confused about different people’s medicine regimes, diets etc. I’ve never been extremely anxious but Ij became a nervous wreck. I tried keeping track of my diet, which made me more anxious. I’m mostly vegan too which doesn’t work with the SCD very well. After struggling with mild symptoms while on asacol for a year, I switched doctors, he put me on the ‘dreaded’ prednisone for a month (which wasn’t very nice but totally doable) and it worked wonders! I changed asacol dosage and was on mezavant for a while (until there was a national shortage of it in South Africa). Point of my long story is that doctors do know what they’re doing if you find a good one, and medication can really help (this is from the hippy chick!) im currently in remission and started feeling better when I researched less, watched my diet less and just took my meds. Worrying doesn’t solve any problems so try to focus on the good stuff. Everyone is unique so find something that works for you. Yoga, pilates, deep breathing and journalling helps. I wish you all the best! You will be fine :) (people in remission definitely post less!!)