me with my husband
My Background:
Diagnosed with severe pancolitis in January 2013 – currently in remission (of varying degrees). I’m a 38 year old married female that loves staying active and caring for all of our rescue animals. I live in a zoo, I tell ya. (My previous stories you can also read here: https://www.ihaveuc.com/author/caroline/ )
Some more about me:
I love the beach and visiting new places with my hubby. I adore good food (which is totally possible with UC!). I’m really active and am currently training for my first half marathon – very excited. Especially because when I was in my flare I couldn’t fathom walking to the mailbox, much less running anywhere (besides the bathroom).
Symptoms:
I’m in remission but have seen a lot of room for improvement, so I’ve been tweaking things. Overall I feel great but I have felt a gradual, slight downhill trend lately- I’ve been really bloated and just not feeling quite right. I also started having blood pretty regularly – definitely want to get this under control!
My Devastating Breakup with Coffee
I am thankful that at this point, life is pretty normal to me. I still check around to make sure I know where the bathroom is, but I can live my life and do the things I want. All good things. :)
However, the past couple of months I’ve gotten a little concerned – my last colonoscopy was great, just showed mild rectal inflammation. Definitely a far cry from where I was when I was diagnosed with pancolitis! But lately I’ve noticed a lot of bloating and discomfort – some days I look pregnant, which, if you aren’t actually expecting is not super fun. I’ve been noticing blood creeping back in, which is never a good sign. I talked to my doctor about it in June and he didn’t seem too alarmed – it seems to come with constipation so he said that might be the culprit. Canasa seems to help a little bit, but I prefer treating things more naturally and would like to REMOVE medications, not add them!
So, I have been on a mission to tweak my diet, supplements, stress, etc to see if I can avert this flare. I eat a real food, grain free diet and do a good job at sticking to that. I don’t eat much dairy or nuts. I added in digestive enzymes with no effect. Collagen powder? Nothing. Astaxanthin? Didn’t seem to help, though it has in the past. I’ve eaten more fat, less fat. More carbs, less carbs. I was starting to get frustrated – and then I had a lightbulb go off a few days ago.
About a year ago, I added back in my beloved morning coffee. I love it – I only have one, every morning. It’s usually really big and on ice. This is part of my routine and even though I know it can be problematic to UCers, I was in a good place and adding it back in didn’t seem to cause a problem. But now, here I am a year later having issues again and just wondering…
I switched to green tea just to see if there was a difference. Of course, there is good news and bad news here. Good news is I think I found my problem! Bad news – yeah, I’m going to have to let my coffee go. I feel so much better and within 24 hours of stopping, my blood was gone. I also do not look pregnant.
It’s easy to get comfortable in remission, and it’s easy to rationalize consuming things that you love that may not be the best for you. I hope this healing continues and that I’ve solved my problem – coffee definitely irritates my sensitive gut. I wish I figured this out before bathing suit season. :)
Medications/Supplements…How I’m treating UC:
Right now: Apriso (will be weaning off next month!), VSL#3, Canasa at night, fish oil, Vitamin D, Glutamine. Strict paleo diet is my #1 weapon.
**Although I prefer to treat this as naturally as I can, that desire held me back from seeing a doctor initially while I tried to diagnose and treat myself. My UC progressed during this time and it took an aggressive round of prednisone to jump start my healing. There is no shame in going to the doctor – just make sure you have one you trust.
written by Caroline
submitted in the colitis venting area
Diagnosed with severe pancolitis in January 2013 – currently in remission (of varying degrees). I’m a 38 year old married female that loves staying active and caring for all of our rescue animals. I live in a zoo, I tell ya.
So happy Caroline to hear an update from you:) And to hear about your improvement in the last year…AND…great job on figuring out how coffee is affecting you:)
I’m guessing that in not too long, you’ll be super happy on a no-coffee program and eventually you’ll even forget what it tasted like and how it made you feel (at least to some degree). So best of luck moving forward, and thanks so much for sharing your story and getting us an updated picture of you (two:))
–Adam
Thanks, Adam! This thing is a journey for sure. I’m still feeling better and better without the coffee, so hoping that’s my simple answer! I always have to remind myself that gut healing is an up and down process and not to freak out when it’s not as linear as I would like. :) Thanks again and I hope you are doing well and continuing to get better!
For the same reason (minor flare symptoms and looking pregnant) I am back on the decaf today and ‘plain’ food. Tested my system out with a mild Thai curry last week and been regretting it ever since. Hmm.
Katherine – UGH! I hear you. Nightshades are still rough for me and curries definitely fall into that camp. At this point, I can have milder ones from time to time – I used to get thai every day for lunch from a great place by my work, and that was not a good time. Haha! Curry is so good! Hope you get to feeling better and the decaf helps you.
I definitely have to avoid coffee. I actually stopped before I was diagnosed because I could tell it was doing bad things. I was back on it for about a week last month and it about killed me. I miss it so much. Even then not so good coffee. Decaf tea is just not the same.
Holly – I totally agree. It seems like I do okay with small amounts of caffeine, fortunately – I just really wanted COFFEE to work for me. It totally snuck up on me – I was fine for so long with my daily habit that I never thought it was the culprit. Hope you have a great weekend!
I only drink coffee every couple of days an its only a regular slice cup and I don’t have massive problems, but aside from coffee I was in remission but than blood started coming back spot by spot and now it’s there most times when I use the bathroom and normally it’s 90% blood, and I’m in my senior year in school. Sometimes when I go its just a little blood and gas, but it still kicks my behind. But yet I still can’t seem to figure out what it is and it’s been going in for 2-2 1/2 weeks now and my next appt isn’t until November. And I try to stay healthy and keep away from trigger foods, but it just doesn’t seem to be helping. Any tips you might be able to give me?
Hi Emily! Wow – you are a trooper, dealing with this while you are wrapping up your senior year. Is there a diet that you are following or have you just figured out what your trigger foods are? For me, there were foods that I had issues with that I never would have suspected, and everyone is different. If you don’t keep a food diary currently, I would definitely recommend doing that. I have bounced between SCD and paleo and pull from both of those camps – lots of people have had success with those plans.
How are you feeling besides the bleeding? I think that’s really important, too. I still have some bleeding but my GI doc says that occasional bleeding might just be my normal. As long as I’m not having a lot of other symptoms I am not going to worry too much. It’s gotten better since stopping coffee but not 100% at this point! If you are feeling good in terms of your energy and everything else, it might not be a big deal. If you are worried and /or you start having other symptoms, you might want to see if you can see your doctor earlier.
99% of the time I can trace my issues back to something in my diet, so really the food journal is probably my best tip! I also strongly recommend finding a good probiotic (if you haven’t already). Good luck playing detective and I hope you feel better. :)
Well i actually have a story on here. It’s called Since I Was Six. And it’s to the point right. Jw that I’m not eating anything throughout the day at school be side I don’t want to have to rush out of class and look Ike a fool cause I had to go so bad. I was drinking great tea with honey and lemon, but besides the pint that I ran out of it, my bathroom trips scent been as bad as normal. I was thinking about starting a log to what kicks it up, but the blood is slowly decreasing, which is good but I’m still nervous and I just want it to do away completely. And I just found out I might have strep so it kinda adds to the stress ad even more in that its Labor Day weekend so I have to wait till next week to get an appt. and we UCers know that dress def does not help anything. I’ll probably start a log though to see what triggers it. And I’m in a family of 6 so it’s hard to stick to a diet when there’s 5 others who bring in foods I can’t eat. When I graduate I’m gonna get a job and save up for my own place and stay on a diet cause it’ll be easier than having 5 others doing their own thing around you. Than you so much for replying, it’s just awesome knowing that there’s like a tribe of us who gets it. :) reply soon!
Wow…..I can imagine it would be tough to do any sort of diet in that big of a household. Have you tried giving up gluten and grains? That makes the biggest difference fora lot of people, myself included. Once you get used to it it’s pretty easy….you get accustomed to meat and veggies/fruits. I hope you feel better soon….the “not eating all day to avoid the bathroom at school” plan is no fun!
I am so sorry for the spelling mistakes.
Just thought I’d say.
When I got sick with UC my body couldn’t handle tea or coffee, so I stopped. It took about 4 months for my body to rid it self of all the toxins. I would get out of the shower smelling as bad as when I went in. The toxins leeched out the pores of my skin. I haven’t had tea or coffee for 24 years. I’m glad I stopped.
Bruce
Holy cow, Bruce! That’s crazy….sounds like it was a good call for you. Hope you are doing well now!
Lots better, am in remisson and have been off all meds for 2-3 years now with no bleeding. Beetroot used to give me a scare until I realised it wasn’t blood but the juice from the beetroot. In the early days I found that eating fruit only from wake up until lunch really helped. Within a few days the champs and pain in my gut had all but gone. You can eat as much fruit is you like but you have to stop the fruit half an hour prior to lunch.
The biggest, most helpful thing has been having people pray for me. Every time people prayed things would happen.
Keep people around you who care for you, don’t allow anything to isolate you from others. All the best for your journey and if there is anything I can do to help or you would like prayer then drop me a line at conbrurob@gmail. com.
Bruce
Hi Caroline,
I had to give up coffee, too! Maybe this study will make you feel better: http://www.kurzweilai.net/tea-trumps-coffee-for-non-cardivascular-mortality
Kristen
Thanks, Kristen! That’s some cheery news. I’m good with living longer, especially if my guts continue to behave! Haha
Hi Caroline,
I’m glad you found the culprit — not so glad that it turned out to be your beloved coffee! Is it the caffeine that doesn’t agree with you…or something else? My daughter who was recently diagnosed, loves her coffee, but has cut way back in an effort to get her UC under control. Her fondness is the caffeine…so perhaps tea would provide that…
Good points, Angela- I didn’t know if it was the caffeine (or amount of caffeine) or something about the coffee itself. Maybe both? My acupuncturist said the acidity of the coffee was probably the culprit – I am drinking tea but the total caffeine load is less than my coffee. I am being careful on account of both.:) Good luck to your daughter!
Thank you, Caroline.
I’m so glad you’re still following your thread. Many posters seem to stop following their postings :(
A side note– my daughter’s name is Caroline, too!
Tomorrow is the 1 month anniversary of her diagnosis. She’s fairly stable on Lialda, Canasa, a probiotic and as much of the FODMAP diet as she can adhere to being away at college.
Have a great day!
Angela,
Glad your daughter is doing well! I had awful tummy troubles in college but can’t imagine getting this kind of diagnosis then. Your daughter is a tough cookie and lucky to have a mom that is so supportive. And of course, she must be lovely with that amazing first name.:)
I hope she continues to manage this so well and has a nice, permanent remission.:)
I stay subscribed to my posts for a few reasons. The first being that I want to give back to this site as it’s been such a resource for me in my own journey! I’m also always curious to hear other peoples’ thoughts and ideas on this stuff. It’s a really good place for that too- and of course for support. Best to you and your daughter! Keep us posted- and if she is testing out tea, I am really liking organic Mighty Leaf English breakfast tea.:)
Hi Caroline,
Thank you!!
She’s not a tea person, but then again, she might want to investigate. Do you find that this tea provides a little caffeine “boost?”
Hmmm…..it definitely doesn’t give me the caffeine buzz that I liked with coffee! But I am also being careful about how much I take – I do feel like it’s kind of strong, and since I don’t truly know if it’s the caffeine or acidity that hurt me I’m taking it easy. I have not gotten any caffeine-withdrawal headaches, so I am guessing there’s something in there! The tea is really delicious though – great flavor.