recent picture of me with a big smile:)
Introduction:
I am 20 years old and a college student in the United States. My family has always eaten very healthy foods, increasing in “healthiness” over time actually. Since my boyfriend lives with me and was recently diagnosed as diabetic about a year ago, I stopped eating high glycemic foods (potatoes, sugar of any kind, wheat, etc.). Anyway, about 2 months ago I started getting blood in my stool… then eventually diarrhea. I haven’t had a solid stool since. The doctors tested me for the standard bacterial infections, parasites, ova, and worms but nothing came up, so they jumped to Crohn’s or UC and threw a bunch of drugs at me. I took prednisone only for about 6 days to see if it would get rid of my diarrhea (I really hate prescription drugs) but it did not help. I tried a few diets but they didn’t work, so now I am starting the SCD with high hopes! :)
Some more about me:
Before this problem, I enjoyed being outdoors, cooking, and mostly just the freedom (which I took for granted) of being able to go anywhere without worrying about where the nearest bathroom is. I am studying chemical engineering, so if this diet does not work (or even if it does) I am going to graduate school to figure it out. Note: that does not mean I will be creating prescriptions, I want to solve the actual problem.
My Colitis Symptoms:
diarrhea that is most severe in the morning, decreasing throughout the day
bowel movements 8-15 times a day I would guess
blood
NO pain (ever, thankfully)
erythema nodosum AKA red bumps on my shins (prednisone sort of helped)
My Diarrhea Is Not Subsiding!
So after I came down with the diarrhea and blood I went to an urgent clinic for testing. Nothing. Then I went to a GI specialist who pretty much blew me off and said “oh, it is not ulcerative colitis, here take these antibiotics for 12 days and come back in 3 weeks. We will do another stool culture.” He started to walk out of the room and I was like “woah, you are BLINDLY giving me antibiotics BEFORE the stool culture. Are you going to call me to see if they are the right antibiotics when the stool results come back?” He responded, “You can call the office.” So you can imagine I was pissed.. I mean.. this is a specialist! So then I proceeded to see an internist who ran a few more tests, C diff and H pylori.. no results. They ran a CT scan and my colon was completely inflamed. She said, “Have you thought about Crohn’s disease?” First of all, you don’t ask a patient that. I am paying you for your expertise. Anyway, my mom and I checked out the CT scan results and it said it could be an infection or a Crohn’s-like disease of the colon. So basically the doc jumped to a conclusion because that was easier than running more tests. I am trying to get into a different GI specialist who has great reviews, but of course the waiting time is 2 months… I don’t care what anyone says, this medical system SUCKS. But really, it does not matter because I have HIGH HOPES for this diet and it makes sense microbiologically and anatomically, which is apparently something doctors no longer learn in medical school.
Okay, so I started the SCD diet on Tuesday, it is now Thursday. So far no improvements. Actually my stool is a little more watery and I have gas. I started the “cream cheese” yesterday and I will be able to get dry curd cottage cheese tomorrow. The diet says to do the introduction for 5 days only… then to move on to add cooked vegetables and then to cooked fruits. However, the book also says you cannot eat cooked vegetables until your diarrhea has subsided. What??! What if my diarrhea is not gone after the 5 days. What do I eat? It also says you cannot add eggs until the diarrhea is no longer “brisk.” What exactly does that even mean? Also, when is cheese supposed to be added? When can I put legal spices and herbs on my meat? When can I add other meats? The diet in the book seems so very vague..
If anyone could please answer my question I would so greatly appreciate it! I feel like I am in the dark. I am 100% committed to the diet – I need to get better!
Medications:
I don’t want to take prescriptions unless it is vital for me to stay alive. Since I don’t have any pain, I would rather have diarrhea than the side effects of drugs.
written by Paige
submitted in the colitis venting area
I am 20 years old and a college student in the United States. My family has always eaten very healthy foods, increasing in “healthiness” over time actually.
Hi Paige! It hurts just to read your story and brings back many bad memories of when I was first having problems. I knew nothing about this condition but always had an irrational fear of bleeding from down under. How very strange! The diet has helped me immensely but has not cured me. The intro diet is designed to rest the bowel but after 5 days max you need to add foods one at a time giving yourself 3-4 days between to see how it affects you. I would try pureed carrots first and see if you can handle that. All meats, and fish can be added and salt and pepper should be ok but I would treat any additional spices as a new food and give time to see if you react. I would look into Prednisone to reduce the inflammation. That helped me a lot. I understand your reluctance to drugs as I feel the exact same way. The doctors keep pushing and I keep trying alternative natural and healthy methods. It gives me hope to see that you want to find the cause of this condition. Thank you and please use your education and experience to help the rest of us. I know the diet can be overwhelming at first and is hard to understand all the ins and outs from the book but stay with it for a month and you should see results. Good luck and keep us posted.
Don
Don,
Excellent comment, and Paige for sure don’t feel alone. There are many a people, myself included at times in the past who have been in your exact shoes. And as Don mentions, for many people (myself included in my initial trail with SCD that turned out to be a positive one), the prednisone & SCD combo meal worked well. I can’t say for sure it was what put me over the hump and into an eventual remission, but it’s quite possible.
Keep your head up, and wishing you and everyone else who tries SCD or any other treatment for UC the very best,
-Adam
Good advice, as always, Don!
Hi Paige, I hope you can get this condition under control as soon as possible. I was really impressed when I read in your post that you want to go to graduate school to solve the actual problem – I hope you will be able to follow through with that. We certainly need more people thinking in that direction! In the meantime, I would like to suggest to you that you have food intolerance testing done (through blood work, not just skin prick). What we think are “healthy” foods are not necessarily because we are all different. I drank milk all my life only to recently find out that dairy (actually whey) is a real problem for me, so I now avoid dairy. I have also cut out gluten and as much white sugar as possible. Over the years, my issues were mostly skin related (I also had erythema nodosum a long time ago) but other family members have UC, Crohn’s, arthritis, etc. Another interesting site/book is the “UnDiet” by Meghan Telpner. She shares some interesting information about her journey with a Crohn’s diagnosis in her 20’s, which she believes was possibly triggered after she got a few immunizations at the same time prior to a trip to Africa. I’m not bashing vaccines but do question how our bodies react. Apparently, a lot of autistic children also have digestive problems (coincidence?)
Hope you will be feeling better soon (remember to be patient). I recall a year ago thinking how fortunate I was because my rashes were on the outside on my skin so I was able to see the progress and see them clearing up. It did take months, though.
Gail
I agree with everything Don said. In addition, you should join the SCD facebook group and the BTVC-SCD yahoo group. You can ask people there questions about SCD and they will be more than glad to help you. What is the “cream cheese” that you mentioned? I have not heard of this. Do not stay on the intro diet for more than 5 days, even if the D has not subsided. Try adding in some ripe bananas. I would add in some plain meat, next, as I have found that to be easiest to digest. Whatever you do, remember that SCD takes a while. It is not an overnight solution. It takes a long time, even if you have only had symptoms for a short while. But keep at it! You are on the right track!
Boiled chicken, cooked( for a long time carrots then puréed) and probiotic-VSL#3 DS( need script for this or can get non prescription strength packets/capsules). I agree- maybe another course of prednisone just to get u over the hump. Coconut oil- up to 3 tablespoons
a day helped my husband(gradually build up to 3.
Dude,
From my experience this is how the thinking goes….
1. Get the fare under control ASAP(in my case I use prednisone as is the only thing that works)
2. Control the problem long-term (in my case 5 ASA and gluten free vegetarian; others try SCD, yoga, herbs etc.or a mixture)
I’m not a doctor. From long-term experience of severe colitis flares (no diarrhea – just blood) I can only say I’d be gobbling back 40mg prednisone per day to get this under control before it gets worse. You then reduce the pred slowly. Talk to you doctor about this option. I realise you, and many others, don’t want to take medicine but it could be worth it for you in the short-term.
Hope this helps,
Peter
scd either helps or it doesn’t. I’ve been following it for a year now but was just in the hospital with a massive flare- total colon inflamed on the ct scan. I didn’t really notice a difference in stool consistency on it the whole time I tried it so you might never noticed formed stools on it… I wouldn’t let that keep you from eating the other foods though because you will get too hungry and crazy on the intro diet!
I like the foods on the diet though so I stick to it with added protein shakes.
Hi Paige,
Some people have really quick turnarounds with SCD but I think for the majority of us it’s slow going. But it does work. For me it’s been more of a slow subtraction of my symptoms over the course of a year. The pecanbread website is really helpful with offering steps and stages about how to proceed with the diet after the Intro: http://pecanbread.com/p/how/stages.html
You’re probably already beyond your intro phase by now, but I just want to reiterate what others have said about going slow introducing things. Start with the easy to digest stuff, and puree it. Texture and taste will have to be on the backburner for this phase, but it won’t last forever; you’ll eventually get on foods you can bite into again! Also, once you’re feeling a little better, consider introducing L-Glutamine and a probiotic. Both of these (recommended by Bev on this site) helped accelerate my healing. I started them about 6 months into SCD but you could probably start earlier. (But again with anything, including supplements, you want to introduce them slowly.) If you’re doing the 24-hour yogurt, that will provide probiotics, but you just want to be careful about not overdoing the dairy at first. Some people are really sensitive to dairy. Good luck!
Hey Paige, Your symptoms are very similar with mine except I do have back pain and cramps. I was diagnosed with severe uc Dec. 2011. I started the SCD diet Tuesday 8/6, so we may be on the same schedule! I weaned off of prednisone after 5 months even though I am still having a good deal of bleeding with clotting. I can’t deal with prednisone anymore. I can’t wean off of it without symptoms flaring up.
I have been eating the chicken soup, purred carrots, eggs, grape juice jello and broiled hamburgers. My bleeding hasn’t let up at all yet- may be actually worse but I am hoping to see some change for the better soon. I am committed for the long haul – it’s that or meds! I am eating eggs even though I am having what I am sure Elaine would call “brisk” diarrhea:) your comment made me laugh!
Anyway, if you want to keep in touch for support, I’ll be happy to send you my email! Best of luck! It will get better!
Beth
Hi Paige,I find the BRATT diet helps Banana,rice,applesauce(unsweetened)(white)toast,Tea.
a banana a day gives me soft formed BMs.Have you had a colonoscopy yet?Find a good GI DR.
Don’t be afraid of meds. you have got to keep the inflammation under control.I have had UC going
on 30 years.It took a while for me to get to the right Dr. and find out what was really wrong
with me too.Its so frustrating!Once I did was put on sulfasalizine and had good luck with that the
first 20yrs or so.but a few times after I would be in remission for several months and feeling better I would go off meds. I also don’t really like taking meds. if don’t have to.But it would
be only a matter of few months and I would be in a flare again.There wasn’t web. sites and such
like this wonderful one back then.I was never told anything about diet or probiotics.Just that
the cause wasn’t known.the last five or six years I have been on colazal.and I have colonoscopy
every year because your chance of colon cancer is greatly increased after 8 yrs or so.They always
came back normal until last years.Showed inflammation,and biopsies showed dysplasia.Dr. wanted me
to try remicade.I researched the med. and decided against it because of the side affects.Then he wanted me to try Imuran,same side affects.I feel like I have a great Dr.,but I just have a gut feeling no pun.lol…that they were not for me.so anyway we settled on making sure I taking my colazol faithfully and repeat colonoscopy in 6 months. which I did.Well inflammation a little better but biopsies still show dysplasia.which is fancy way of saying precancerous cells.Dr. talked
about the meds. again but he said even if I tried them we could repeat colonoscopy 6months I could still have the precancerous cells.Which the only option is to have colon removed.Because in time
they will turn to cancer,and cancer from UC is usually very aggresive unlike just colon cancer in
a non UC pt.So I have a appt. with a surgeon in Sept. still not going to try the meds.I have researched the suregry on this site and others. J pouch and all.Dosn’t sound like fun at all,but
I really don’t have much choice.I would like to keep living.I’m female 52yrs old was 23 yrs old when got UC.Same day I found out what was wrong also found out I was pregnant first time.I had four
kids all healthy none with UC.pregnancy seemed to help my UC.What I would of done different,but may of still been facing the same outcome.I would of tried diet changes,and probiotics,and would of
stayed on my matanice dose of meds. to keep the inflamation under control.God bless you.Don’t give up.Find a good Dr. but don’t be afraid of medicine.
Hi,
Before curing myself two years ago with a combination of fecal transplants and drugs I tried to Specific Carbohydrate Diet (SCD.) When followed very strictly it did seem to help somewhat although I lost 10 lbs n about a week. I was literally starving to death. I agree with Jimmie about a low residue or BRATT diet In my experience diets that helped limit diarrhea were more helpful, the brown sugar banana bread recipe by Heather Von Vorous was very helpful for limiting diarrhea.
Hi Paige,
My initial flare of Ulcerative Colitis in 1999 resisted even 60 mg of Prednisone and 12 x 400 mg of Asacol per day. Finally the addition of Cipro brought that initial flare under control. Finally in 2011 after coming within days of surgery I discovered fecal transplants and successfully treated myself using those combined with anti-inflammatory and anti-depressant drugs.
Even before trying FMT I also discovered that anti-depressant drugs and the herbal supplement Valerian root extract were very helpful too limiting diarrhea and slowing diarrhea seemed to help mesalamine and also yogurt pro-biotics to work. While a diet like SCD can help by limiting inflammatory triggers while introducing and nourishing good bacteria through pro-biotic yogurt I think for most people it alleviates symptoms and reduces inflammatory response while not permanently eliminating the root problems: a damaged gut barrier and a bacterial imbalance in the colon.
If you are seeking a permanent cure, it involves healing the inflammation past a certain point to restore healthy gut barrier function while also permanently altering the bacterial colony in the colon with a well established self-sustaining mix of bacteria, using FMT. At that point highly restrictive diets may become largely irrelevant, or at least that’s what happened in my case. It didn’t happen overnight for me, however it chose that course of treatment, you might get permanent self-sustaining results more quickly than patients who have had chronic UC for many, many years.
I was just reading your story when my 9 year old niece walks in and says what ya doing, explained I was reading a story and that this lady has UC and she said ‘oh she looks to pretty to have UC’.
You have many questions that we all start asking when we first get this nasty disease. However the only way to go about things sadly is trail and error. Train yourself to start making notes of everything you eat and everything that happens on the loo, how many trips. Some people can not eat bananas for example or simple eggs cooked in any possible way. This method might take years but it really is the only way to go about things as far as food and diet is concerned. That is the reason why the diets in books conflict with the same diets on the net, peoples personal experience has changed them for the better (for themselves).
As for drugs prednisone as good as it is it did help me for some months then it started to not work after 6 months I ended up taking that drug for almost 2years (doctors don’t like you to take it any longer than 6 months). It can change the shape of your face I am so lucky it never did to me but I got night sweats and mood swings for sure, so glad to come off it and stay off it which took a massive effort as I was flared big time for a long time. It can weaken your bones if taken for a prolonged period of time also worth reading up on, my lower back is below average bone density age of 31.
Hope you get yours under control soon, also worth reading up on the FMT I think this is the best and most direct method to help heal UC, it may be the most annoying and complicated one!, nothing comes easy tho right?
Richard(uk)
Paige,
The whole process is a learning experience, you have to figure out what works for your body. Eventually you will learn. What concerns me is that you mentioned “cream cheese” do you mean farmer’s cheese? Its a grueling experience. I can tell you that based on previous experience, the SCD diet takes time. When D is “brisk” I believe it means when it is lessened. I am currently in a flare up stage myself, due to the lack of keeping up with the SCD diet. But I would suggest, eating foods that are very BLAND. It takes time. I also don’t take medication, because then you have to depend on it. I don’t want that.
Drink lots of water. Just hang in there. It won’t happen overnight. I just wrote a post, earlier, the last time I noticed my UC getting better, I experienced less mucus and blood, less gas, slowly and painfully (but you said you don’t experience pain, which is good) the stools start coming out, at first, then normal again. Remember to hydrate. Its tough, but hang in there.
I am also trying to eat smaller but more frequent meals. I also find that making my own chicken broth at home and having that makes me feel better – not really sure why. And yes Medical system does SUCK – agreed!
Hi Paige,
Are there any updates on your condition? I am currently in a very similar position to where you were in August when you wrote this post. I would love to know how things have progressed.
I was just diagnosed with Crohn’s and have just finished the SCD intro diet (have been eating only unprocessed, whole, plants and animals – no grains or sugar – for a while before SCD, as well). I have a relatively minor symptoms: diarrhea and blood but not much pain. I haven’t taken any medication from my GI doctor yet, and I would love to avoid doing so, hence giving SCD a real chance. Like you, I am willing to stick to something 110% if it can resolve my issue in a long term sense… I just have to figure out exactly what the something is!
I hope your condition is improving and I would love to hear about how it’s coming along.
-Michele
Hi Paige,
Your post could’ve been written by my 18 year old daughter.
How are you doing now? Would you mind sharing an update?
Thank you!!
Hi all!
Sorry it has taken me so long to do an update.. I haven’t been doing SCD because to put it frankly, it didn’t work for me.
I lost so much weight waiting to introduce new foods and this is really what made me continue to lose weight because when you eat so plainly for extended periods of time you lose your appetite and eating becomes very stressful, which is counterproductive in my opinion.
Anyway, the search continues! I’ve come to the conclusion that diet is not my problem because I have tried so many things.. SCD, paleo, fermented foods, kefir, more fiber.. supplements.. the list goes on! I think I either have a bacterial or parasitic overgrowth, OR my body is attacking itself from too much stress in college.. or maybe my colon just hates me.
My symptoms are generally the same.. I’m on Azathioprine (ugh..) and Lialda, and currently I’m just eating freely because I want to enjoy my life and gain weight. I dropped from a healthy 125-130 lb to 89 at one point.. now I’m back up to 112 and feeling great except the diarrhea or loose stool in the mornings and at night. Sometimes I get a full nights sleep with no bathroom interruptions, which is awesome. The urgency is usually gone during the day, so I can confidently go about and enjoy my life to an extent.
Right now I am just trying to live as normally as possible. I really wanted to solve this naturally and I am still looking for answers, but I’ve learned I can’t let it consume me anymore. I feel lucky to be without pain and extreme urgency.
I wish everyone the best of luck with their health endeavors! Please ask me any questions.. I’ve read so much material and so many anecdotes.. but also, I’m looking for recommendations as well.
Hi Paige,
It’s been awhile since your last update. How are you doing?
Hi!
Well, I wish I had great news to report, but I don’t have bad news either. I am off the Azathioprine which makes me happy, but I am on Remicade now. It doesn’t seem to be helping much, though. I still have the same symptoms.. urgency and trouble sleeping through the night, but most days I feel pretty good and I’m living relatively normally. I actually got pregnant in February of last year and had my baby who is doing GREAT! It was actually a very pleasant pregnancy except for one week where I needed IV prednisone due to a nasty stomach bug, which put me in the hospital for the first time. I actually gained over 35 pounds while pregnant and kept about 10 of it after the birth, so I’m doing pretty well at 115 pounds again. I am not on any specific diet because I really needed the calories while pregnant, and I still need them to breastfeed. I obviously wish my UC would be cured, but it’s amazing what you can get accustomed to and honestly, I’m happy with my life and what I can do! :)
Paige,
Stay on the scdiet while taking your meds. But the regular diet where you can eat a lot except those forbidden illegal foods. You won’t continue to lose weight on the regular diet because you can eat cheeses and almond flour baked goodies etc. this diet may help you get into remission while on the meds. But again you must stay on it for at least a year. I believe it can help you but it’s hard I know. It’s when we start going back to unhealthy high sugar foods that keep us stagnant in our healing process.