Symptoms not common.

Hi All,

I have been diagnosed with UC for about 14 years. My symptoms have always been unusual in the way that I don't have frequent bowel movements, and rarely diarrhea. If anything mine are the opposite. I am usually constipated?? It seems that when I do go it does'nt amount too much. I never seem to get relief. Is there anyone out there with the same experience? I take Asacol 3 tabs, 3 X's a day. It does'nt seem to help much, in fact sometimes I will stop taking it for month or so, because it just does'nt seem to do much good. Then I'll go back on and things will get better again for a little while. Thanks in advance for your input/suggestions/anything.

Do you take a probiotic? That's helped me get more regular. Also, taking digestive enzymes with every meal has helped alleviate constipation for me as well.

I got really constipated before having my first flare ever. I have heard of constipation being one of the first signs of a flare. Have you tried taking a fiber supplement every day? Maybe that would help?

Katie Rose..welcome to the forum.

Where in the colon is your UC diagnosed..throughout or limited?

quincy

Hi...this is just a general soapbox info session/rant/preach....

The inflammation location mostly determines the symptoms. Since UC inflammation of a flare starts at the lowest part of the rectum...symptoms will not be as noticable because they aren't usually the norm that patients have labelled as a flare. The symptoms could be bloating, stomach discomfort, excess gas felt a lot in the rectum, constipation (subjective) with smaller, harder or scant bms. More mucus can be seen around the bms or even itself during evacuation.

As the inflammation continues (either upward or remaining depending on the limitation of the UC), the symptoms can change to more mucus and gas, pastsy, pencil/thin stools, more cramping, frequency, urgency and pain upon bms.

High in the rectum inflammation can start to present looser stools, sometimes somewhat less gas but more cramping, urgency, frequency, and that nice razor feeling upon bms...yeeow!

As the inflammation continues upward, the stool tends to be evacuated more quickly...so, a tendency for diarrhea, spasming....etc seems to be noted. I have less gas with diarrhea but more spasming. Definitely the raw butt syndrome comes into play and then there are other discomforts to deal with.

As the colon heals, it's usually from top to bottom based on the meds one takes it seems.....so, the symptoms will tend to go backwards with constipation and more discomfort of the stomach and with gas.

Rectal meds are really important from my perspective (and experience)...regardless of how high the inflammation goes because the rectum will always be involved.

I've not heard of constipation UC...but it makes sense if the inflammation site is very low and remains limited. That form is extremely difficult to deal with from what I've read.

Some with low limited site inflamation can also have cecum involvement....and if one's case is very stubborn and only dealt with rectal meds, the cecum gets left out of the treatment. If it's inflamed, the rectum will continue to be no matter how many rectal meds are given.

Not that this is written in stone (as per pb4..there are always exceptions or misdiagnosis or other things going on as well)....but there are some basics of UC's pattern of inflammation that seem to continue to be left out of the equation. It might help to realise that when starting a flare so that it can be treated early.

I haven't mentioned bleeding, because although it's a classic symptom, it shouldn't be the first one we wait to see. Once it starts to happen, the fragility (friability) of the tissue is in a progressed state.
Many doctors also use bleeding as a criteria of importance and ignore patients until they get to that point to take it seriously. A huge neglect.

While my points may not be taken seriously ....they are about as basic as can be regarding urgency toward early treatment. And in early treatment, patients have their own freedom to increase and decrease according to needs. That gives freedom and lowers the distress. The bonus of it is that their UC has less potential to spread upward.....and flares should be less serious as the years go by.

Again, not that it's written in stone, but it's a good chance of having things (flare/remission process) still going well looooooooooong after the predetermined 10 year mark of doom and gloom some doctors preach/threaten.

OK....soapbox put away.

quincy

It wasn't until the past year or so that I've been having the constipation problem. Before then, I was textbook when it came to symptoms of Uc. I contributed my constipation to inflammation though because once the inflammation was under control, things sort of equalized.

Yes, constipation is not the norm for Uc but it's not unheard of either. Oh and btw, welcome to Healingwell :)

Quincy,

My doctors could never figure out my UC. It didn't start in the rectum, but began further up my colon, and then cleared again. My colon was kinda like tiles on a floor all joining together the way they should to start the perfect pattern, then being interrupted with mismatched tiles (my ulcerations) then the tiles coming back together again to continue once again a perfect pattern. Do most people with UC have it begin in the rectum and work up? Just wondering. I am in total agreement with you on the rectal meds. They gave me my life back.

Kim

KR...

q

I have UC and I have never had diarrhea.  If anything it was always constipation.  My symptoms would be constipation, dirty flatulence and bleeding.  My colon would get so swollen and inflamed and nothing would want to pass except wet gas.  Since I've been on Lialda, I no longer have constipation, in fact, I empty out in the morning (soft and solid), but it's horrendous!  I'm bearing down with spasms like I am about to give birth to a bowling ball.  The only way to stop that is to take probiotics, but probiotics totally constipate me.  I've yet to find one that doesn't. Even very low dose pearls get me in trouble.

I think I've tried every drug so far but remicade and humira and nothing really worked to get me into remission for more than a few weeks at a time--I really do think I've been hard to treat because the drugs they give UCers are not for my type of symptoms.   Any relief would be temporary.  The only thing that did work in the past was cortisone enemas--but I couldn't stay on them forever.  My next step will probably be humira if my insurance will cover it.  I really do wish there was a board just for us.

PC,

I hate to recommend Lialda over anything else because I'm presently not doing well at all.  At first when I took the lialda I thought I stumbled upon a miracle. It worked fabulously--and only once in the morning.  I felt like I had found the answer.  I went to the bathroom like a normal person; the only problem I had was some dry flatulence, but I was able to deal with that--no other side effects. Then, about two months into it, I started having more and more flatulence and horrible mornings with too much going to the bathroom (solid but soft) and pressure and bearing down pain.  So, I knew I was going into the throws of another flare until it reached it's peak yesterday and I'm almost back to the way I felt before medicine.   I've tried fiber a year ago, all different brands but it made me worse.  The only thing that stopped the pain, spasms, and gas was probiotics, but again, they made me so constipated (I've tried several brands) I had to stop them.  I have an appointment in two weeks with the doctor.  Can't get an appointment before that unless I want to see the PA, so I'll wait.  But I'm really a at loss of what else to try since I've tried antibiotics, 6MP and all of the Mesalamines and rectal medicines.  I'm not really in favor of giving myself shots, since that will probably stop working too after two months.

Gdfairy,

I'm so sorry that your not feeling well. The up and down certainly seems to be the norm with this disease. Every now and again I'll try something new and it will work for a little while. I'll be thinking that "finally' I've found something that works, and then I'll take a turn for the worse. Go figure!! I have been off of Asacol for about 5 weeks now (it did'nt seem to help much, and I wanted to go pill free for a while), the constipation has been getting the better of me, so I thought I would try some fiber. Not a good move. I'm back to constipation, bloating, dirty flatulence, and some bleeding. I have stopped that and will just try and settle my system for a little while. I do have some Anucort suppositories that I may try. Hopefully these can shock my system back on track. I have found them to work in the past, however, given the consitipation and constant flatulence their not much "fun" to use. ;) If that does'nt work I'll go back on the Asacol. Have you tried to contact your GI Dr by email? Mine will usually prescribe me something without me having to go in for a visit. I can relate to what your going through. Get lot's of rest, and I hope your feeling better real soon.

Katie Rose said...
Constipation UC?? I will definitely do more research regarding it. I've talked with my GI Doc about it several times. I get the impression from him that it is normal?! But when I do talk with other's that have it, they always relate the fact of their sudden urge to go and diarrhea, so I'm contantly questioning whether I have been properly diagnosed(which can lead to a kind of denial :)) I have had about 6 colonoscopys over the last 14 years, and, my GI Doc assures me that I have UC but...... I'll check it out, thanks a bunch.

I can relate.  My symptoms on dx were C, severe cramping, blood, mucus, (urgency, frequency with the latter 2), bloating, and frequent mouth ulcers.  I haven't had D at all.  I asked my dr. and his explanation was that people describe the symptoms differently - one person's mucus is D to them, whereas to me it's just mucus.  I don't know that I buy that; maybe some people here can chime in.  I think earlier my dr. also told me that C was a result of inflammation (but I've also read that results in D) - maybe it depends on how bad/where the inflammation is.  So I'm sort of confused and in a bit of denial too.  The meds did work great for me right after diagnosis but then gradually I've needed more of the 5-ASAs to keep my system moving and preventing the C and cramps from coming back, and keeping the urgency/frequency tolerable.  The blood and mucus are pretty much constants these days...no remission in sight there.  Oh, I did try lots of fiber before my dx but it did not help much - I guess b/c my problem was soon to be bigger than that.  Anyways I wanted to let you know you're not alone, and it would be great to learn more about our form of UC. 

My doctor explained it was the inflammation causing the constipation.  That the inside walls of the colon were so swollen and inflamed that nothing but gas, mucous and blood could pass through, and the longer it took to have a bowel movement the harder the stool got which created a vicious cycle.  That's why some people get impacted and have to have surgery.  When I'm i in a really bad way, if all else fails, I take a high dose of magnesium.  Gets it really soft, almost liquidy and I eventually clean out--but it's not fun--not quite as bad as a colonoscopy prep, but you have to do this on a weekend or your day off.  Then I start the enemas to get the inflammation down along with my oral meds.  I just think it's all individualized how anyone's particular body reacts to the inflammation.