Intro:
My name is Cole and I am a 25 year old male living just outside of Vancouver, B.C.. I am a student and am looking forward to finishing my business degree in the fall. I just got diagnosed with UC this May and it literally came out of the blue..no family history, no symptoms or bowel issues EVER prior to the onset of symptoms in late April. I have had a total of 4 colonoscopies throughout my two hospital stays, which add up to 45 days stuck in a hospital. I lost 60 lbs during that short time and as of lately feel like I am starting to improve (somewhat).
Some more about Cole:
I love to travel, pretty much live for it. Work to travel! I am very active in the gym and enjoy outdoor activities such as fishing, camping, hiking, etc. I also enjoy watching movies and documentaries.
Symptoms:
Currently, I am still having about 5-8 BM’s (no solids, always the ‘D’ and sometimes blood but not as common anymore) a day, usually occurring during my sleeping hours. Occasional stomach aches. Weight loss.
Cole’s Story:
As it goes for stomach/GI issues I have never had any problems with them at all up until this past April. My girlfriend and I had been planning a four month backpacking trip for well over a year and a few weeks before we left I started to see some fresh blood on the toilet paper. The blood started the day after I took the vaccine Dukoral (a drink you take that is supposed to protect you from getting cholera aka ‘travelers diarrhea’) and the sight of blood on the TP continued throughout that week. A week later I took the second (and final) dose of Dukoral and started to have diarrhea (still bloody) and bloating (anyone else have this problem?!? coincidence or not..). April 25th, 2015 we left for our trip (first stop: India) and I was still seeing blood and had the ‘D’. As someone who never had any family history or personal history of having bowel issues, seeing blood was startling to say the least. The week before our departure I went to my family doctor to ask what was going on. He did a stool sample and blood sample but both tests came back fine. Once my girlfriend and I got to India the symptoms did not subside. Ten days into our trip we decided to head to a hospital. And there I spent a whole 25 days in a Hospital in Goa, India (a private hospital at least). At first they assumed it was infectious colitis so they started me on metronidazole right away. Well…the pain subsided but I was still having watery diarrhea 10+ times a day. They then did more stool samples, CT scans and a colonoscopy to see what was going on. They found e.coli in my stool so started me on more antibiotics. As for UC, the GI doctor there told me “he doesn’t believe it is UC” but the GP was saying it is. They started me on mesalamine (a generic brand in India), which was not working. They then started me on prednisone (IV form at first) which was helping more than anything before. And finally, after 2 5 excruciating days I was discharged with prednisone and mesalamine. We had to wait 4 days for my prescription and as I was feeling better, my girlfriend and I decided to try and continue. We flew to Thailand (the next leg of our adventure..) and once there I started to feel like crap again. A lot of pain, 10+ bloody BM’s a day, more weight loss. So needless to stay we hopped on a jet plane where I then spent another 20 days in the hospital in Vancouver.
In Vancouver they took blood and stool samples as well as 3 more colonoscopies, a CT scan and X-rays. Luckily we did come home because they then found Salmonella in my blood. I was put on vancomycin and acasol in Vancouver as well as continuing prednisone (but up to 60mg again, IV). As time went on, I had less pain but still bloody BM’s. The next route was…Remicade. I have now had two infusions but still not much improvement. In between the hospital stay in India and at home my girlfriend has been doing her research (as have I) and I have started the SCD diet. She bought the book so both her, my mom and I have all read it. I am on day 10 right now but am not seeing all that much improvement…
I did the intro diet, pretty strictly. We bought a yogurt maker and made our own yogurt. We also made the soup and have been eating only the foods listed for the intro diet. I was having less BM’s at first (2-4 a day) with no pain or blood, just watery. Now I am having more BM’s again (5-8) all runny and had blood on Sunday. I have been eating chicken, beef, fish, eggs and the SCD chicken soup. I stopped the yogurt as I thought maybe it was too early for introducing that. I have moved onto the first phase of the diet and have now introduced zucchini, spinach and banana. I am wondering…
a) When am I able to introduce seasonings? (i.e. oregano, basil, peper, oils, vinegar, etc.)
b) When can I introduce my probiotics and L-glutamine? And other vitamins such as vit D, C. etc.
c) Am I able to drink tea in the morning while in this phase?
d) Is it normal to still have diarrhea after the intro diet?
e) How do I know when it is OK to introduce more vegetables and fruit? I am still having diarrhea so it’s hard to figure out whats affecting me and what is not.
f) When should I be going into the second stage?
g) Any advice of what kind of snacks I can have in these phases other than meat, veggies and jello? (Like when can I have cheese, nuts, almond bread, homemade fruit shakes, almond butter etc…)
h) Should I introduce the yogurt back into my diet?
A lot of questions but the book is pretty vague! Please help!
Medications:
Currently on Prednisone 30mg now from 60mg.
Remicade (just had second infusion)
Multi-vitamin, vitamin D, calcium, tumeric, vitamin C, vitamin B12, omega 3-6-9, L-glutamine, licorice root (stopped taking right now as I started SCD, but am now introducing them again)
written by Cole G
submitted in the colitis venting area
My name is Cole and I am a 25 year old male living just outside of Vancouver, B.C.. I am a student and am looking forward to finishing my business degree in the fall.
Hey cole! Im new to dieting as well for crohn’s but not to remicade! When I first started remade it took the first 3 loading doses before I noticed anything different such as my symptoms and how I felt but after the initial loading doses I felt great! So you may just need more time don’t get discouraged. For the diet it is different for everyone. If you follow it pretty strictly it tends to work and you will have to test on adding other things slowly! Hope things start getting better I know this has been a tough journey for you. There are a lot of good support groups out there for IBD we are all willing to help!
Oh man! I can’t imagine how it must have been for you in a hospital in India for so long and had it interfere with your backpacking trip, I’m sorry! That is nuts.
I too became really sick for the first time while traveling, I was on a trip with my friends to St. Maarten during my first big flare, no fun!. It is interesting because I got a bunch of vaccines prior to a trip to Vietnam a few years ago, but didn’t see immediate side effects afterwards, I got sick about 7 months later.
I have tried a bunch of diets, and just not even eating sometimes. I haven’t tried SCD as religiously as I should have, so I can’t deny or confirm the benefit of the diet. I did introduce a couple things, not recommended by my doctor and it seems to be helping.I stopped eating Lettuce 7 months ago and that seems to help a bit (I only eat Spinach and Kale now). I also cut out dairy and whole grains too and am slowly introducing if and when I can handle it. Unfortunately I too am still bleeding though, wish that would stop! I finally got off Prednisone after 2 years though, so I guess I can deal with minor blood in the stool until I can get into a full remission somehow.Small victories!
1. I have added a pill called Gastrazyme (you can find it on amazon) it has been known to help absorb the Mesalamine better, so I take that 2-3 times per day
2. Also I have added Inflammatone pills (find on Amazon), 5 per day
3. My body cant seem to handle a lot of Mesalamine, so I only take 2 Apriso per day
I am a world traveler myself, and my UC has definitely taken over, but I think I am finally learning to live with my symptoms and ready have it stop interfering with my life and happiness, I am now trying to work on the ‘mental” part of this disease. Everyone is different though, some people benefit more from other diets and routines, hoping you can find yours soon, so you can feel comfortable again traveling!
Cheers!
Jenna Baron
Check out SCDlifestyle.com. Answers to a lot of your questions are there. Be patient. SCD works! And I would introduce probiotics ASAP. Vancomycin probably destroyed your gut bacteria. I would also be tested for c-diff. I have a friend who developed c-diff after taking Vanco and symptoms are similar. Best of luck! You are on a great path to healing!
Thanks for Sharing Cole!
And wow…just like everyone else…pretty amazing to hear you were tied up in a foreign hospital for such a long time… You could probably write a few books on what that’s like for sure!!
Hey, I think one thing you should definitely realize about diet is that at the very end of the day, everyone is their own variation of what works best, when, how, etc… There are some generally believed “best practices” if you will, however there are always exceptions to the rule. For example, I have come up with a protocol of my own that has worked very well in getting through flare up or near flare up (with full blown symptoms) many times. There’s a video I made that is located here:
https://ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/
You have a great question about snacks, cheeses, nuts etc… MY advice is simple…don’t eat any nuts until you are taking hard poops with no bleeding and no cramping feelings. Nuts are what sends people backwards far too often, when symptoms are even remotely present. Not eveyrone, but MANY. So I’d steer clear until you’re out of the woods regarding those. And then even after that, I’d go lightly on them(very lightly) for a very long trial period.
While I’m thinking about it, you might be interested in getting an allergy test. Food allergies are hard to figure out, and you might be surprised with what may/may not appear. Several have written very favorable stories about these from the site, so that’s an idea as well.
Diarrhea should end after the basics SCD foods are eaten for quite some time. Maybe not super hard formed stools, but the peeing out your butts should be over.
Good idea from another about getting a C-diff test.
That’s always good for UC’ers in my opinion when symptoms are present and you want a little more piece of mind. I’ve written about that since 2009 here, and I get emails monthly from UC’ers worldwide who found out they had c-dif even though docs had no clue. Worth the investment in my book…ask your GI…if he/she doesn’t know about c-diff…CHANGE your doc ASAP.
OK, best of luck, and thx for the multi pictures Cole, you gonna be alright soon!!
-Adam
Vaccines!! I am telling you…wow. I even can’t get the flu vaccine at all anymore (and I used to have it every single year and then flare almost immediately afterward). I always thought I just had that autumn/winter flare. Last five years, no vaccine…and no flares!!
I believed in vaccines…still do…however, I can’t seem to tolerate the immune response that they produce IN ME.
I am not saying that this happens to everyone. I have no idea why it happens in some of us.
That’s my two cents here.
Hi, read about work and treatment by dr.Borody. He believes that long term antibiotics ( Rifaximin) ans than probiotics and FTM is the cure for UC.
Good luck!
Oh man. I thought I had a bad first flare with 21 days in the hospital. I feel your pain Cole! We have the same story, same background, same everything minus the foreign hospital stay.
My UC came out of nowhere and hit me hard. I lost 40lbs in about a month and a half. Felt like I was dying. Got cdiff on top of the UC. Had the surgeon in my hospital room every morning trying to get me to sign off on a colectomy. I told him no way. Finally the infectious disease doc and the GI agreed to give me remicade which is not normal protocol if you have cdiff. By the 3rd infusion I came around where I started to feel halfway normal. Took me a full year to get back on my feet and finally get rid of the cdiff for good (fingers crossed). The remicade saved my colon for sure but I got off of it after 7 months because I couldn’t shake the cdiff. I take a bunch of supplements now the main ones being probiotics and L Glutamine. I actually forget I have UC some days. Hang in there!
Hi Cole. I’m a 52 year old male and I’ve had uc since age 15 ( yep 37 years with uc lol). I’ve had ups and severe downs but I just want to tell you that if you hang in there, you will reach a point where uc becomes part of your life. Some days are going to be more difficult than others. I want to share with you some non traditional remedies that have helped me throughout the years. I’m not going to talk about diet and medications, since I’m absolutely certain that what might work for one uc sufferer might not work for another. But my experience has proven to me that there are some therapies that might help:
Vsl#3 probiotics. Absolutely the best probiotics out there for uc.
Fennel powder: boil and drink.
Arabic gum: it comes in crystals. Crush and mix with water and drink.
Cumin powder : same as fennel.
Turmeric supplements.
Pomegranate peel: put in a blender and boil the powder in water and drink.
Perfect pass probiotics .
Dr ohhira probiotics
Culturelle probiotics
Vitamin D supplement.
Try the above and write me on my email. Preferto@gmail.com
Good luck my friend
Sam
So sorry you had to deal with this in India. I’m going abroad next month for the first time since I was diagnosed with UC and I am a bit nervous. How can one be in Paris and not eat the croissants? Ugh! I shall refrain! Anyways, I too am on the SCD. However, mine is more of a combo of SCD, GAPS, and Paleo. It takes some trial and error as to what irritants you because we all have different sensitivities. I had been taking UDO’s probiotics but just started the VSL#3 so I am feeling hopeful. It’s specially formulated for UC so fingers crossed. I had been doing really well for the past 6 months…on no medications…just supplements and eating right. However, after 4th of July I flared again. I think it was either a dessert I ate that had artificial sweetener or all the dang boiled peanuts I ate (southerner here). Either way, I feel off the wagon. So I’ve started the VSL#3 as well as my usual turmeric, L-glutamine, Borage Oil, and Fish Oil. Also, making some bone broth, as it is great for healing the gut. Good luck to everyone. The struggle is freaking real!
I see a lot of posts here for people taking Tumeric. It is important to remember that the most powerful part of the Tumerick plant is the route so if you were looking for anti-inflammatory supplements you should be taking curcumin. Needs.com has a seminar in their archives which explains a lot about that. I would love to hear from anybody who has some long term curcumin use with results!
Root not route ! Lol. That is what I get for dictating instead of typing!!!
Hello! I just wanted to say that everyone is different and therefore everyone has different results. Like you, when I was diagnosed 5 years ago I did a lot of research online and everything I read was terrifying! I had been dealing with the D for months and wound up in the hospital because my body went into shock and I was severely dehydrated. I only stayed in the hospital for 2 weeks thank god and was released on Prednisone and Asacol. I too bought the SCD book, yogurt maker, and a bunch of other things that I was convinced would help me. After all of that I still was miserable and lost 20 lbs after being discharged from the hospital. At that point I started just doing trial and error with foods to see which ones upset me the most. The one big thing that helped me was watching my fiber intake. Anything with a lot of fiber would make me so sick, which my doctor told me was because our bodies work that much harder to break the food down. I was weaned off the prednisone and was still taking Asacol (2 pills 3 times a day) for 3 years. A couple years ago I went down to 2 pills in the morning and 2 at night and all is well. I truly think the medicine just needed it’s time to starting making a difference. I am now on a clean diet meaning I just eat healthy. I eat grains again but in the sprouted form, I stay away from dairy and corn, limit beans, and try to avoid fast food all together. I hope this helps and you get to being well again soon!!!
This was the closest story/thread without starting a new thread…
Good morning all! Just a question for those UCers that travel. How do you deal with Traveller’s D? I’m currently on vacation in the Caribbean and have developed it suddenly over the last couple of days. I am taking pepto bismol ( last 2 days) and started cipro this morning( as per my GI specialist’s directions should I get into trouble). I have a stronger antibiotic if the cipro does not work. I had a similar situation happen to me last year and ended up in a bad flare. Any thoughts or advice?
I am currently on Salufalk tablets 2000mg in AM and PM . Also 1000mg suppository at bed time and 2000ug Vitamin D3.