Newly Diagnosed...symptoms anyone, please HELP!
Scoobydoo1180
Posts: 49 Member
Hi everyone 
I feel so strange sharing such personal info but I know absolutely no one else with this disease. Then again, who is broadcasting this sort of person issue I'm a 32 yr. old female. I've had symptoms for since early April 2013 so over 10 weeks.
My issue started when I started to feel very bloated and just an overall feeling of sloooow digestion. Then I noticed these issues along with constipation. Not that usual...Then weeks later I started to have the urge to go to the bathroom anywhere from 10 - 20 times a day but did not actually pass stool. I would have gas that seemed very hard to expel from my body with MUCUS (YUCK). These symptoms have persisted and when I did have a bowel movement, it would sometimes be normal and other times watery / loose (diarrhea). These symptoms persisted (I was so hoping they would stop somehow). I then had a burning sensation in my stomach (comes and goes, worse in the morning or if I have not eaten for some time).
I finally picked up the phone and made a dr. appt. when I saw blood in the toilet...and toilet paper...after a couple of times to be honest....SCARY!!!
I had my 1st colonoscopy the other day and the dr. said I have ulcerative colitis...and its chronic (as Im sure you all know)
He then called the next day to confirm that the biopsy showed it was UC. He said it's a mild case, on 2 on scale of 1 - 10 as I have 8'' of inflammed tissue.
He said it was not caused by a bacteria (I was concerned as we have cat and that had tape worms in the past....maybe I caught that ?).
So my head is spinning...I'm swapping emotions of anger, depression and denial...
I also have an endoscopy scheduled soon to do a biopsy for Celiac disease as my blood work came back positive with some antibodies...
I guess my questions are, could I be misdiagnosed ? I maybe have diarrhea an average of once a week and the only time I noticed any cramps is before a bowel movement and then the pain is gone...My chief complaint is the bloating, difficulty passing gas and the mucus with the urge to go...(obviously the blood too but that came much later). Does anyone else have these symptoms ? I read that microscopic colitis can be caused by Celiac disease ?
What is the difference between ULCERATIVE colitis and MICROSCOPIC colitis ? Are both chronic ? Same treatment ?
I am on Rowasa enema (once a night at bed). Starting to feel a little better but still bloated and constipated...HELP!!
I feel so strange sharing such personal info but I know absolutely no one else with this disease. Then again, who is broadcasting this sort of person issue I'm a 32 yr. old female. I've had symptoms for since early April 2013 so over 10 weeks.My issue started when I started to feel very bloated and just an overall feeling of sloooow digestion. Then I noticed these issues along with constipation. Not that usual...Then weeks later I started to have the urge to go to the bathroom anywhere from 10 - 20 times a day but did not actually pass stool. I would have gas that seemed very hard to expel from my body with MUCUS (YUCK). These symptoms have persisted and when I did have a bowel movement, it would sometimes be normal and other times watery / loose (diarrhea). These symptoms persisted (I was so hoping they would stop somehow). I then had a burning sensation in my stomach (comes and goes, worse in the morning or if I have not eaten for some time).
I finally picked up the phone and made a dr. appt. when I saw blood in the toilet...and toilet paper...after a couple of times to be honest....SCARY!!!
I had my 1st colonoscopy the other day and the dr. said I have ulcerative colitis...and its chronic (as Im sure you all know)
He then called the next day to confirm that the biopsy showed it was UC. He said it's a mild case, on 2 on scale of 1 - 10 as I have 8'' of inflammed tissue.
He said it was not caused by a bacteria (I was concerned as we have cat and that had tape worms in the past....maybe I caught that ?).
So my head is spinning...I'm swapping emotions of anger, depression and denial...
I also have an endoscopy scheduled soon to do a biopsy for Celiac disease as my blood work came back positive with some antibodies...
I guess my questions are, could I be misdiagnosed ? I maybe have diarrhea an average of once a week and the only time I noticed any cramps is before a bowel movement and then the pain is gone...My chief complaint is the bloating, difficulty passing gas and the mucus with the urge to go...(obviously the blood too but that came much later). Does anyone else have these symptoms ? I read that microscopic colitis can be caused by Celiac disease ?
What is the difference between ULCERATIVE colitis and MICROSCOPIC colitis ? Are both chronic ? Same treatment ?
I am on Rowasa enema (once a night at bed). Starting to feel a little better but still bloated and constipated...HELP!!
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Replies
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You will find that everyone who answers this question will have a different response. Because UC is different for each person. What we can eat, what we take, our symptoms are close to the same. What we can eat during a flare up, which is what you are having, and once we get into remission. And I have noticed that my body will handle something (food) differently. I may be able to eat something one week but have some trouble with it the next. For me, it is a guessing game, now that I am in remission.
If you are having trouble with solid food, until your colon gets better, try eating a liquid liquid diet or a low residue diet. That means the food doesn't leave much in the colon. If you look it up on the internet it will explain more.
I hope you feel better soon.0 -
I feel your pain! Was sick for two weeks before ending up in the hospital. On day seven and still here. Worried about going home without a clear understanding. I have always eaten very healthy...to the point my family considered me nerotic about it.
I am just thankful I have this site to track everything. Just wish there were not so many ignorant people that answer serious questions with idiotic answers. Like put it in a blender with alcohol. I mean come on! Just pass the question up if thats all you have to say. Sorry...got a stupid answer earlier..guess it is still bothering me.
Feel free to friend me, maybe we can help each other with this struggle. Diet tips ect.0 -
This disease is a beast; have had it for 10 years now. It doesn't seem to matter what I eat or whether or not I take medication. The only clear no-no is that when UC is flaring, I can't tolerate alcohol at all.
My body cycles into and out of remission for reasons that I can't figure out. I am enjoying remission right now and hope it lasts a long-long time.
My symptoms are usually a deep ache in my left lower pelvis with the urge to pass something every hour or so, most often just bloody mucus.0 -
My UC is also mild and, as such, it is manageable if I respect it. Our symptoms are very much alike. Take your meds (mine took about 72 hours to kick in). Avoid trigger foods. Make regular appointments. Ask questions. I felt vulnerable in the beginning, but, my job requires periods away from a bathroom, so I absolutely needed to get control of this. I integrated what I needed to do into my routine, making it as rote as teeth brushing.
Your ticker is fabulous (congrats on the weight loss), so I assume you have been tracking and have a sense of the basic smarts you need to get whatever job you need done done. You are already checking out other possible agitators, so you are on your way. Keep going.
The Crohn's and Colitis Foundation of America may be helpful: http://www.ibdetermined.org/ There's even a button to click asking "Are you newly diagnosed?" Somebody else may have another source that they suggest.
I wish I could offer more. Good luck!0 -
Sounds like UC. I've had it for 15 years. Diagnosed in my mid-30's.
I will write more later. Just did a night shift and falling asleep!0 -
Ugh, just typed a whole message and lost it. Maybe I'll private message you in a few. Hate this computer!!0
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I have had great results with the Specific Carbohydrate Diet, aka SCD. You might see if your library has the book, "Breaking the Vicious Cycle", by Elaine Gottchall. There is also a website, just Google, "breaking the vicious cycle". Another great place to get information is from SCDLifestyle. They do have a program they sell, BUT you can get a lot of information by liking their FB page or signing up for their email alerts. They take the SCD a step further, talking about supplements, hormones, and a host of other topics related to UC. As one commenter stated, each individual is different. I have had a lot of success treating mine without meds using SCD and supplements. Root causes and issues must be addressed to be successful this way, such as adrenal, hormone, candida, parasites, SIBO, nutritional deficiencies, food sensitivities and/or allergies, chronic inflammation, etc. I caught mine early, like you, and changed my diet immediately. If you have any questions, please feel free to pm me.
Here's to your health!0 -
It sounds all to familiar ...I got diagnosed with UC in 2006. My major symptoms were frequent and bloody stools, fatigue and some abdominal tenderness. I was told it was left sided colon, so I was taking the Rowasa enemas and keeping a food diary, to see what may have trigger some of it. I stayed away from citrus, acid, and fast food... It worked back then, but now after 2 kids, working full time, and trying have a work life balance, I think my flares are brought on by stress! So try not to stress over it
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Welcome to the gang! As the others have already said, sounds like you have UC to me. All is familiar, especially the mucus, gas and bloody stools - the joys!
I have been diagnosed for about 8years now, but with hindsight I think I have been symptomatic probably closer to 10 years or more. Mine is also chronic (as opposed to acute) and since diagnosis, I have been on and off every medication combination available. Currently I take a combination of mezovant (mesalazine) daily with oral prednisolone and once a fortnight give myself an injection of humira (adalumimab).
For me, this is my last shot - nothing else has worked well enough to get my disease in remission and I am reliant on steroids keeping everything under control regardless of the other meds I take. I have been on humira for 13 months now and it is the most stable I have been in years - but still when I tried to come off the steroids, I flared really badly within 72hrs and had to go back on to bring it under control.
I see my doc again in about a month and will find out then what the plan is (this time last year the conversation was about surgical options, though so far I have avoided surgery). I have spent this year working on losing a bit of weight and increasing my strength/fitness, so I am in much better shape than I was a year ago - so whatever is ahead I hope I am in better shape to be able to cope with it and recover from it.
As others have said, each person's experience of UC can vary massively - I have found through trial and error that dietary changes can make a bit of difference, if I flare then the only thing which doesn't irritate me is porridge (weird one I know!). I have recently been reading up on perfect aloe matrix, supplement has good reviews for sufferers of IBD so considering trying it out to see if it would help me come off steroids. Things to avoid are the obvious ones i guess, too much bread or caffeine, citrus or fried things - tracking your food will help you spot any patterns particular to you.
Best of luck, ask questions, get second opinions, keep an eye on what you eat and your symptoms - we are all here if you want to chat / vent / ask stuff 0
