This is something that I don’t talk about very much, but it is very important. In a nutshell, I probably waited 5 or 6 years and suffered with Ulcerative Colitis before I really did anything. The biggest mistake of my life in-fact. But its true.
I can remember finally telling my wife that the reason I was taking so long in the bathroom was because I was having problems with my plumbing. I remember the conversation clearly, we were driving away from my mom’s house(probably around September 30thish, 2008) and I told her I was bleeding while taking a dump. She must have thought it was a joke. Why hadn’t I told her this before?
We met about two years prior and had been married only 5 months. The second or third day we knew eachother she probably thought something must have been up. I woke up at my dad’s house and went downstairs to the bathroom(my favorite bathroom that was the farthest one away from my room… There were two other bathroom half the distance to my room that I grew up in, but I ALWAYS choose to go to this one. It was a vacation spot for me actually. The walls were painted navy blue, there was som cool little nick nacks that my stepmom came up with next to the sink, nice tiles, the shower I used too. Often actually, instead of the one next to my room.
Back to the story, the third day after I met my now wife, I went to the bathroom after waking up and was in there taking a crap for probably 30 minutes. That’s not weird is it? Didn’t even hit my mind until after we were married and I told her about the bleeding and she said “so that the reason you always take so long in the bathroom?!” I can’t remember my answer, but obviously the answer is YES.
I have had a few long term relationships prior to meeting my wife and I am guessing they were probably thinking the same thing over the course of the hundreds but more likely thousands of craps from those days. Maybe couples/friends/everyone doesn’t talk about bathroom habits of others enough… Any thoughts there? Any good stories anyone? please post if you take 30 minute craps and nobody has ever said until you were married.
I think the strangest lesson so far has been the human body has a great way to get used to things without making healthy changes, even when its killing them.
Definitely I should have gotten things taken care of earlier. First of all, I have a family member(very close family member) who has the other one Chrons. I knew this for years and years. This family member has a bag on the side. If you believe in the whole hereditary thing or not is not the point. I knew at an early age that the human body can get so out of wack, that a surgery taking something out can even be a good option and lead to a perfectly normal life. But I never until a few days before my colonoscopy saw the connection.
Back maybe 5-6 years ago, I started waking up in the morning and using the restroom and not really understanding BUT noticing that a hard “normal” crap was not an average everyday occurrence. No no no no, never really thought anything more than that. But get this, if you asked my close friends if I ever made a big deal when I had a normal “BIG” one. They unfortunately would probably say that Adam out of all others probably would be the one who talked more about Number 2 than anyone else.
Let’s jump forward several years to maybe 3 years ago. Has anyone besides me ever thought they just had ulcers which was causing them to bleed when they took a crap?once again, please post something if this is you, because that was what I was thinking for probably a year and a half to two years. Of course my stomach was never the problem. My favorite meal for quite some time now has been a big porterhouse steak from the Santa Cruz Market in Santa Barbara, California, and a big baked potato with sour cream, and salsa and cheese. The steak cooked med/rare on the BBQ too.(just getting a wet mouth thinking of it) A little side note too, the Santa Cruz Market is a heavily Mexican patrioned grocery store down there in SB. They don’t call the steak cut porterhouse, I forget the name in Spanish. My point is this, its a full on porterhouse cut, and thick as hell, and most of the time it was about $4.29/lb. And this was only 3-4 years ago. What I am trying to say here is I was eating everything, stomach was fine, I just started thinking I had ulcers and that was the reason for the blood. NOPE
So, lets say the last year prior to being diagnosed and most of the time living in the Prague, Czech Republic i started thinking that it was simply “Hemorrhoids are painful, swollen veins in the lower portion of the rectum or anus.” (Google copy and paste) That’s right, the blood now was not only mixed in with the crap, but also it was very fresh on the toilet paper. I am not even sure if I ever looked up what a hemorrhoid was on the internet, but I had ideas from hearing about them from time to time. I just assumed that it was something down there, actually I think I thought it was a blister on your butt hole. What a joke I was. The long story short is I just kept with that idea, and thought eventually it would go away. Well, sometimes it would nearly go away.(the side comment here is denial) Considering what you know about me, it was probably more like “OK Adam, you went a few days without any fresh blood, just blood mixed in with the crap, MUST BE GETTING BETTER”
I plade that game for a long time. Much longer than any other game I have ever played besides soccer. I was a soccer play from ever since I can rember up until Senior year of High School, when I got 3 concussions in one season(upon reviewing this before posting I remembered that only 2 were soccer related, the other was slipping down in Cabo on a tile and hitting the head). Right about the same time Steve Young was getting his concusions here in the San Fran, and news was saying how that was bad yadayadaydada and so I stopped.
Not coming to terms with your symptoms is incredible. Looking in hindsight it is truly amazing. If anyone has a story even remotely similar, please paste it here. (I am hoping I am not the only lunatic out here)
While its getting late “GO SHARKS!”
But more importantly, if this story rings true to you and you haven’t told your wife yet, tell her first, then go directly to phonebook, and call nearest Gastroenterologist! They are people who work in the field of medicine/health. They can be found at most hospitals, and medical clinics. It’s like calling up the local plumber pretty much. And most of them are extremely cool people like my gastro doctor here in Palo Alto California.
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
My bro sent me the link to your site. I have UC too and spent about 7 months last year in absolute pain and distress. It started off with problems actually going to the bathroom, mixed with bouts of diarrhea and the yes, lots of blood. The gastroenterologist kept telling me it was IBS and that I had to learn to live with it. Finally, this last June it was so bad that I started getting flu symptoms: fever, chills, body aches, etc. So I went back and told them that, and they sent me to do an emergency colonoscopy–I assume you finally had this done too. That showed that the first 3rd part of my colon was so inflamed, it looked like Mars on the screen. They said it was like trying to pass food through sandpaper, which is exactly how it felt. That sudden convulsion of the stomach, and boy if a bathroom wasn’t nearby, I was in TROUBLE! Running to the outhouse in the middle of the night at the River was always a challenge.
Well, after the colonoscopy, the doc put me on prednisone (a steroid) and asacol, an anti-inflammatory specifically for UC. I don’t know if you are on meds, but these two meds completely changed my life! Almost immediately I was 100% better. I was on the prednisone for about 4 months (they slowly tapered it off at the end) and I’m currently still on Asacol (1200 mg 3 times a day). I’m not sure how much longer I will be on Asacol, but it has really helped. I have not had one flare-up since being on this med regime, and there haven’t been any really bad side effects either. I highly recommend trying this regime if you haven’t yet.
I’ll keep watching your posts. Good luck, and thanks for sharing your experiences! I know there are a lot of people out there who suffer just like you have and think that it’s not treatable, that they just have to deal with it.
One thing I’ve learned to look for, in regards to blood in the stool is the color of the blood. If it’s a lighter colored red mixed in with the stool, that’s “new” blood – meaning it’s a fresher bleed and is probably coming from either a hemmorhoid or from the lower/descending part of your colon. If your stool is really dark and almost black in color, or you notice a darker red mixed through it, that is “old” blood meaning you’re bleeding from farther up in your large intestine – typically on the right, or ascending, side. It’s darker in color because it takes longer for it to exit, and blood darkens the longer it’s been exposed outside of a vein/artery.
Since I have pancolitis (my whole large intestine is one big disease) the blood I experience is usually a mixture of both “old” and “new”. It is helpful to tell your doctor what you’re seeing though because there is so many different types of UC, sometimes the color of blood you see and whether or not it’s mixed in with the stool can help with how your treatment goes. It also helps to determine the severity of your colitis, which can give you an idea of what to expect should your condition worsen.
These kinds of details are what everyone with bowel problems should know! Why do we all shy away from the honest truth and not talk about this? I’m sure it’s one of the factors of people not getting help sooner – people need to KNOW.
I had the same sort of experience. In about 2001-2002 I had started having bleeding while going to the bathroom… never any diarreah or pain, but always bleeding. Everyone I told always said it’s probably hemmeroids. so, I left it go for about two years. (I was only 21 after all…) Never had any pain or diarreah, just bleeding, and sometimes, mainly for the last year, the whole toilet bowl was filled with bright pink water. That’s when I finally decided I needed to go to the doctors and that it was more than just hemmeroids.
I went, had the colonoscopy and the doctor diagnosed me with crohns/colitis. He gave me pentassa at the time (I think it was something like 4 pills, four times a day) and some mesalamine suppositories. It got better… and as long as I used the suppositories there was no bleeding. I eventually stopped with the suppositories too.
Then a few years later, I was having a very stressful time at school, and ended up having to take antibiotics for a sore throat… well, that gave me diarreah. I got really sick and laid in a bed for weeks. At that time they prescribed me with prednisone (was weaned off after a few months), a very high dose of about 40mg a day, along with imuran. I got better, and had no symptoms for about 5 years.
Then, I found out I had a basil cell skin cancer. They said it was from the imuran lowering my immune system (since I have never been a sun worshipper). So I had that removed and wondered if I could go off of the imuran and not have any problems (I know I didn’t want any more skin cancer, also, I read that Imuran was bad for a fetus and I really want to have children some day.)
So, it just so happens that it was a bad time to decide to go off my meds. For one, they gave me antibiotics when they removed the skin cancer, and for two, I was dealing with another VERY stressful time in my life. It was all around a bad time to try this.
This time I got bleeding and diarreah. So, back in January, I started a round of pred… and wasn’t getting better. I researched and found out about the SCD and started that and low and behold… I got better. So, I’ve stuck with the diet, and a few weeks ago I came off the pred. I think a bit too soon though, since I started bleeding again. This time, no diarreah, but the bleeding has come back, this time for the first time, with a little bit of a pain in my lower left abdomin. It’s more like a pinch when I bend over to pick something up or if I twist my torso weird.
So, I’m not giving up. I started the into diet over again and am using rowasa enimas and hopefully I will get better for good. I really don’t want to have to go on pred again… and definately don’t want to go back to imuran or try remicade.
Also, I think I only have UC, even though my first doctor diagnosed me with both UC and Crohns. I only have symptoms of UC.
So, that’s my story.
Hi Adam! I am about three years late to this posting but got a chuckle out of it and it brought back a memory I thought I’d post. I too thought it would be a good idea to not mention the cramps, blood, or other icky issues I was having at the potty. Although I had been with my husband for about 16 years at the time, the height of the most ridiculous flare was during a one month stay in Prague. Picture this poor gal getting off at the Malastranska Namesti metro stop and having to walk in the July heat up to our apartment at the base of the Castle steps on Thunovska. I can imagine that you know the area well enough to know it’s up hill, hot, and a decent walk on cobblestones. My poor husband. Kindly, he’d make sure all the windows were open in our tiny apartment sans air conditioning. I sheepishly would blame the kava late or the goulash and dumplings at Stara Praha. I found more restaurants to blame until my husband recommended we stop eating out. I’d like to think I’m a nice looking woman. The smell and stuff that was coming out of me was definitely counterintuitive. The next year, when I wanted to return Charles U and to Budapest, I had to see a doc and confess to my husband that there was an issue to which he replied, “You think.” HA! Funny, how we think those around us don’t notice the visits, the length of the visits, or the fact that we’ve peeled paint in the bathroom. Ick. I love your site. It’s become my go-to place since I’ve been diagnosed with ulcerative colitis. I am in a flare now and can’t seem to get in remission. Time to change my diet. Thanks again. It’s a great space.
I hope you can get this flare of your to go back the other way soon. Heck, maybe you need to drink up on some slivovice right…I can’t tell you how many times some extended family has told me that is the solution…of course I disagree, but would be nice wouldn’t it..
Thanks so much for writing in, i’m sure that even while living with UC, praha was still a good time for you guys. I hope to see you around here more and best of luck with getting through what you’re going through right now.
Thanks, Adam. I appreciate your response. This week has been rough. I’m hoping to start Uceris tomorrow and get out of this five week long flare. One of the lights at the end of this tunnel is that my husband and I are planning to get back to Praha this summer. I may even try some slivovice (if I am close enough to a potty) and feel like butt burn is a good idea! : ) We had it once or twice with a couple of friends from Praha (a native and his wife from SF). I likened it to drinking rubbing alcohol with a black licorice stick melted in somewhere. I enjoyed the joint ache survey today and feel 110% less alone than before with all of the great posts on this site. Crossing my fingers and hoping to post from a cafe in Praha one day. I’m still trying to figure out what I’ll eat being that bread and kava are off my list. Crossing my fingers that this flare will be behind me super soon.
Hey there…i was diagnosed 2 years ago. Like you, i thought hard about sharing my UC with my love interest and decided i should. I didn’t elaborate on the symptoms though, i figure Google would tell them a lot more than i can. It was a good decision and i think it shouldn’t be kept secret from your loved ones, and the side benefit is that it sets certain expectations on lifestyle and lifespan.
I had it on the last section of the colon so its considered minor and I’m on Salofalk tablets and enema, had short remissions for a few months now and then but its starting to flare up big time with blood and all recently. I supposed its because i just relocated to a country that’s entirely new to me, new weather, new stress, new food, new kind of drinkable water.
I hope you are under remission and keep it so. Most importantly, keep it as a consideration in though but don’t ever let it dictate your choices in life.