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Long...lots of questions on mild UC

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Ulcerative Colitis
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Posted 6/14/2008 10:58 PM (GMT 0)
Wow - this is my second post and I haven't even been a member for 24 hours.

I have been reading and reading about UC here and you are all so honest and helpful. I must have a very mild but irritating case.  I have read about all the BM's and types and meds...in some cases it has confused me more.

My episodes that have kept me up all night have been due to the pain that I feel in my gut and back.  I end up sleeping (if I can) on a heating pad.  I only have a few BM and they are firm.  One time it did go into D and vomitting so I ended up in the hospital for observation which got me an appt to the GI.  My appendix was inflamed but not enough for surgery and I was not running a fever so that is why I did not have that surgery and send to the GI.

I have been seeing a GI since beg of March. As I have mentioned in my earlier post I was put on Entocort and am now off to see if it was doing anything for me.  I feel nothing has changed.

My question being....my flares up do not sound as bad as many of you so I question what I have however I do have the lovely picture of the ulcers in my colon for proof to remind me there is something wrong.  I only have the D occassionaly.  My BM are usually snake like and may end like mashed potatoes but this does not usually happen more 3 times a day.  I only occassionally have a little blood in my stools seem to have more in the fall when school starts so probably a stress issue.I am very very tired all day long. I now take naps when I never have in the past, not even when I was pregnant.  I am crampy a lot and have my back aches and I have some joint pain.  I now I have it better that a lot of you but I still just don't feel right so that is why i am writing.  I have had blood work done for everything and all comes back negative.

I keep a food diary.  It is hard to tell what bothers my b/c it may one time but not another.  I try to eat the same high fiber items for breakfast and lunch so I can experiment in the evening.

Nothing is changing my minor pains.....HELP! eyes

Posted 6/14/2008 11:40 PM (GMT 0)
2boyzmom, our flares, like everything else, can vary. Not everyone has diarrhea, a few actually have constipation. Do you know what part of your colon is affected? Mine is limited to the colon and sigmoid, and even in a full flare I rarely have diarrhea. I will have bleeding and mucus, narrow stools, crampy pain, severe lower back pain, arthritis and extreme exhaustion. It's a pattern frequently seen in proctitis or proctosigmoiditis.

Are you on any maintenance medications? You should be on one of the 5-ASA drugs rectally and probably orally also. Steroids and Entocort are not maintenance medications, and should only be used short-term to induce remission. Asacol, Colazal and Sulfasalazine are the drugs most often used to keep the disease under control.

Your pains will improve when you're in remission, which it sounds as if you're not now. Your doctor should have a plan for treatment that goes way beyond steroids.
Posted 6/14/2008 11:49 PM (GMT 0)
Welcome to HW! I'm not quite sure what you're asking. Just because the bloodwork is inconclusive, that doesn't mean you don't have UC. My bloodwork was, too. There's some percentage that it shows, but it's not 100%. Your symptoms sound a little similar to mine. I just started getting really bad pain in my right side in early May, after not having that symptom before. The docs say that it's another symptom of a flare in the appendix area. My D isn't as bad as most here, but my bleeding is incessant.

This is a great place to learn, vent, and laugh. If I didn't answer your ?, please clarify. It was hard to figure out what your ? was.

Also, it's not as busy here on weekends and some of the forum moderators are on vacation, so we have some very nice stand-ins.
Posted 6/15/2008 12:19 AM (GMT 0)
Thanks - my questions were just to clarify if my flare ups were flare ups.. so my questions were answered in both of your posts. I think I wanted just to hear a response - I must be desperate!!! I don't have anyone to talk to. I also thought that since my symptoms were not as bad as others then that is why I was not on meds like most of you were or currently are - so I need to find out what my doctor's plan is for me.

2 things I need to do is get a second opinion (I need someone who can talk to me in non doctor terms that I can understand) and to find out what part of my colon is affected - I had no idea that was important to know.

Thanks, Jill
Posted 6/15/2008 1:45 AM (GMT 0)
That's what this forum is here for, Jill, so people like us have someone to talk to, especially when things are new or changing. Questions to ask:

"How much of my colon is involved? Rectum? Sigmoid? Left side? All?"
"If what I have is really UC, even though it's mild, why am I not on any maintenance medication?"
"What is your treatment philosophy and your plan for me?"
"Are there any supplements or probiotics I should be taking?"
"What kind of diet do I need."

Now, the responses to the last two questions will most likely be "No" and "No special diet," but I like to at least give them a chance to have input on my decisions.

Above all, it's your body that's being affected, so be pleasant but very clear that you plan to be a partner in your treatment. Good luck to you, and I hope your second opinion is very helpful.
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