How Severe is my UC?

[Tom91]

Hey everyone, I was recently diagnosed (19 yrs old, 3 weeks ago). I had been having extremely painful stomach cramps for the past three months and was finally diagnosed a few weeks ago after I went to see the doctor at my school. Throughout this entire period my bowel movements have been fairly normal, I usually go once a day and don't have diarrhea or too much constipation, even during severe flareups (thank goodness). I've just have to deal with a severely painful cramplike feeling after eating meals that usually last anywhere from 1 to 6 hours, and starts either immediately after or 2-3 hours after eating. The only other worrying symptom I have is bloody stool. I'll usually notice some bright red/ maroon blood when I wipe (I don't see blood in the stool in the toilet, but i'm sure there must be some). I had a blood panel and thankfully aren't anemic. Right now the only medicine I've been given is called Levsin SL (.125mg) tablets, which really help with the stomach cramps but don't always last four hours. I'll still have blood in my stool even on the days when I feel perfectly fine after eating (like today). I won't be getting any UC specific meds until thanksgiving when I go home to see my GI doctor.

I was just wondering if people could tell me where I stand in terms of severeness of UC. I lead a very active lifestyle, before the stomach cramps started preventing me from going out at night/ after eating. I've also read a lot of things about surgery and I'm quite scared of the idea of having my entire colon removed. I would love to here if my experience is similar to anyone else's who has had the disease for longer and could tell me what i might expect further down the road.

Cheer,
Tom

 

[Crohn's 35]

Hey Tom :welcome:... you have come to a place where we know how you feel and the frustration of the disease. There are many young adults on here to help you along. Just keep in mind what happens to one person maybe different for you or someone else. Fitness, the disease level, where it is located and what kind of IBD. Many have stoma's but they are leading have full active life and glad they did it.

Being as young as you are, it is embarrassing to talk about and certainly not campus talk. Have you seen a doctor or Gi recently and blood work done of b12 and ESR? Bentyl is for cramps too but they dont always work.

Someone will be along shortly who has more incommon with your symptoms. Glad you found us! :bigwave:

 

[Tom91]

thanks for the warm welcome I had a set of blood tests taken two weeks ago, although i'm not entirely sure what they were testing for. My doctor just told me that everything was normal and that I wasn't anemic. The only other symptom I could possibly think of is that I might be tired more often (or it could just be college...) it's just the stomach aches that have really been affecting my life (the blood in the stool is also pretty worrying).

 

[Crohn's 35]

I also may help us to know what country you are from. I am assuming the US? :hang:

 

[Tom91]

Yep

 

[Crohn's 35]

Believe it or not Friday nights are crazy here lol. Some one will come.

 

[JohnnyRottenAppleseed]

U need to see a specialist if u have blood in your stool. Sounds like untreated crohn's/colitis. Only a colonoscopy and specialist can tell. The good news is you are active and don't feel sick.

 

[JohnnyRottenAppleseed]

Don't panic. Have you tried fasting? Do you take probiotics? Have you taken antibiotics in the last 6 months?

 

[Tom91]

My GI recommended probiotics which I started taking for a week but stopped when I was put on omeprozole. I also stopped that within a week once the doctor confirmed it wasn't working. The only way I feel sick is when I get these terrible stomach pains (like right now/ for the past two hours )

 

[Jessi]

How were you diagnosed? Did you have a colonoscopy? Did they do biopsies? Was there inflammation present? Which area(s) were affected? Judging by the color of your blood, your bleeding seems to be coming from the rectum (red) or somewhere near there, and also from much further up (maroon). I could be wrong. *shrug*

As an example, I had a colonoscopy in May 2011. Biopsies showed UC. Inflammation throughout my entire colon, from rectum to cecum, and completely laced with ulcers. This was called a severe case. My GI put me on prednisone and Asacol HD, then switched me to Remicade infusions for maintenance. I am now in remission and get to hang on to my colon for the time being.

 

[Tom91]

I wasn't officially diagnosed in the sense that they're 100% sure it's UC yet however, they've eliminated most cancer/ibs/ the other common illnesses that cause similar symptoms. I've been in college since late August and haven't had a chance to see my GI back in NY, I've just been going to the student health clinic on campus. The doctor here is fairly certain that it's UC because of the blood in the stool (which I guess is primarily maroon, I forgot what red blood looked like...). I'm having an upper GI on Tuesday to make sure it's not Crohn's, but my endo/colonoscopy isn't until thanksgiving break in three weeks... The bleeding is definitely the most worrying (but not the most debilitating), but neither my GI or the doctor here seem to be doing anything about it/ telling me what it means. I just want to know what my future will look like. I've been getting these stomach cramps after eating for the past month, and I honestly wouldn't have been able to deal with them if I didn't have the levsin. I just want the pain to stop and the bleeding to go away

 

[JohnnyRottenAppleseed]

Have you taken NSAID drugs like Advil ibuprofen or aspirin? That can make you bleed

 

[Tom91]

I've taken tylenol three times, other than that I don't think I've had any NSAIDs in the past 2 months

 

[Ducey99]

Hey Tom,
Did you say you are not seeing blood in the toilet? Just when you wipe? If so it could be caused by hemorrhoids or fissures etc. that are just in the lower portion of the rectum. The colonoscopy is what will determine the extent to which your colon is involved obviously, but seeing blood only when you wipe is better than seeing it mixed with your stool.

 

[JohnnyRottenAppleseed]

Take a closer look at ur poop. Break it apart and look for blood. Gross but no one else is going to do it. Like the poster above said if its not on ur stool it could be a hemmerhoid

 

[Tom91]

Thanks for the advice guys. It's a little more difficult because i'm sharing a bathroom with 3 other guys but I'll see if I can find any blood in my poop next time I notice it while wiping. I'm meeting with my doctor tomorrow, and I'll definitely have some follow up questions. Also in the past few days my symptoms have been getting better (fingers crossed) I no longer get stomach aches after lunch (just mild discomfort if anything) and haven't been getting pains as often after dinner.

 

[rygon]

I'd definately look at what you are eating and seeing whats causing your discomfort. Everyones different but if you look under the diet section here you will get a good understanding of what could cause the discomfort. It may just be that youre eating a lot at once. I find having more smaller meals per day helps a lot, and not eating anything large 6hrs before bed

 

[KaLa]

Hi, Tom. I started having similar symptoms when I was around your age. I am almost 40 now and still have my colon. If you are seeing blood, you definitely need to have a colonoscopy to determine why you are bleeding. Are you having diarrhea or really frequent/urgent bowel movements? Usually with my UC, it's a really bad flare when that happens, coupled with a lot of bright red blood. I would definitely press your GI doctor for a colonoscopy so you can get a definite diagnosis, or at least see where the bleeding is coming from. Good luck with everything!

 

[Tom91]

I think I had a bad flare 3 weeks ago. I had the most severe stomach pains i've felt so far, and noticed blood in my stool for the first time. That being said, my bowel movements were pretty normal. I've been having one a day since my symptoms started really (which i'm extremely thankful for), and my stool consistency seems to be pretty normal (although it looks different sometimes)

 

[jaggartini]

How do they know it is UC without having had a colonoscopy done?

If you want to compare, when I'm flaring (or even flared in the early days when i was younger - 27yrs) I was going way more than once a day. Maybe 10-15 times a day. Blood always present etc and severe stomach cramps as soon as I ate, diarrhea, nothing was normal about it. I'd go off food, look dark around the eyes and feel very tired.
When i was hospitalised I was going 30 times a day and had to get up 2 or 3 times through the night to go and got cramps in my sleep. Was hideous as many can relate.

Sounds like you may have Proctitis more than UC.

Surgery scares the crap out of me too, fortunately I have not had any yet (touch wood) and i've flared plenty of time but treatment has worked.

 

[Tom91]

The diagnosis of UC hasn't been confirmed, it's just what my doctor here assumed it was. I haven't started any treatment for it yet as my colonoscopy isn't for another two weeks. Most of my symptoms do match UC, except for my lack of diarrhea. I was just wondering if people had similar experiences.

 

[jaggartini]

You don't have to have Diarrhea to have UC. A full flare may bring on Diarrhea. From memory i didn't have "D" when i was first diagnosed.

 

[Tom91]

What were your symptoms when you were first diagnosed? I'm really hoping I don't get D later on

 

[shazz]

Hi Tom,

I have got UC and my symptoms when first taken ill were occasional d, a lot of blood, both on wiping and in the bowl, really bad left side pains, tiredness to the point of not being able to stay upright and that was it really.

I dont get a lot of d but my diagnosis is distal colitis. This means that its on the left side of the colon on the decending part. Have had 1 colonoscopy, 2 flexible sigmoidoscopy and 1 mri scan that threw up more questions than answers.

Easier said that done but try not to stress as that can make it worse.
Hope you get your tests soon and get some definitive answers. It can take a while to get a diagnosis though.

Sharon xxxx

 

[Tom91]

thanks shazz!

I've recently been getting somewhat gaseous after eating. I don't get cramps or bloating I dont think, it's more like I can just feel the gas moving through my intestines. When I do release air, it smells different from my normal farts (definitely worse). Does anyone else experience similar symptoms?

 

[Rossy]

Bad smells can be associated with bleeding, often I know I'll be seeing blood, as I've been forewarned by the smell.

 

[Richard414]

Keep track of what you are eating and drinking. You may see a connection between a certain food and your pains. I lived with UC most of my life and certain foods definitely effected it. My UC also seemed to be seasonally related, flare-ups often coming in Spring and Fall.