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UCMommyof2
New Member


Date Joined Mar 2008
Total Posts : 19
   Posted 1/16/2009 9:01 AM (GMT -6)   
I've been researching UC for as long as I can remember and I am not a typical UC person. Sometimes I wonder if maybe just maybe they misdiagnosed me or something. I just wanted to throw my story out there and see if anyone is like me. It would give me comfort to know, I guess.
 
My mom has UC so it's not something I am a stranger to. When I was 18 I had rectal bleeding. I went to see a GI and they said I had a fissure. They told me to take colase and if I was bleeding after a few months I would need a colonoscopy. Well I never stopped bleeding, ever. It wasn't blood in the stool, or blood in the bowl... just blood when I wiped,  never much but always there.
 
When I was 23 in my first pregnancy I started having these little "fat, phlem, mucus" deposits when I poo'd at around 6 weeks. No pressure, no cramps, no diarrhea. I didn't know what to call them so I couldn't research them... are they fat deposits? Mucus? Pieces of tissue? I still don't know... I do know now that ulcers release them. I had a miscarriage and a few weeks after they just stopped.
 
I still had bleeding, just when I wipe.
 
When I was 24 I got pregnant again. I started getting those deposits again... and again, no pressure, no cramps, no diarrhea. They were annoying and sometimes alot. Into my 3rd trimester I started getting the "farts with a gift". Which I had through my whole pregnancy and being SO embarrased I wouldn't tell anyone. Again, a few weeks after I delivered everything just STOPPED.
 
I still had bleeding, just when I wipe.
 
When I was 26 I got pregnant (yeah, I'm done folks). I started getting those deposits again at 17 weeks... but they got worse and worse. At 25 weeks I was almost hospitalized. I couldn't leave the house, I would go to the bathroom, come downstairs and run up to go again. I'd go up to 7 times in an hour, up to 50 times a day. Never, EVER any diarrhea... just those little deposits. But now there were tons of them, I mean like a cup full every time I went. And the smell... horrible. And the INTENSE pressure to always have to go. I couldn't eat, I couldn't even drink water. As soon as I did I ran to the bathroom. I was starting to get scared so I went for an emergeny sigmoidoscopy where they diagnosed me in a severe UC flare up. And I figured I probably had it but I couldn't understand... I mean NO DIARRHEA, No BLOOD.... why not? Why aren't my symptoms classified? Why did before the flare would just end on it's own? I figured this last time I would just get through my pregnancy and it would go away by itself. But it didn't. The Prednisone couldn't even really control it, it just reduced it to a controllable amount. about 2 months after I delivered it just stopped, and I weaned myself off Prednisone.
 
No more blood... no nothing.
Well until yesterday when I had a few deposits in the AM and I've been wiping blood again. And I'm not pregnant... and I don't quite know what to do. I've been taking cayenne pills to help speed up my metabolism and thinking, maybe they're irritating me. So I've stopped them and am hoping the symptoms stop too. Can symptoms just stop? Can someone eat something that doesn't agree and have a few symptoms or is that just it.. you eat something, you start to flare and that's it, you need meds?
 
Thanks for listening :) Thanks for offering your stories and advice in advance.
28 yr. old Mother of 2 in NY
Diagnosed in 2007. Currently in remission.
Family history: Mother with Active UC, 30+ years on Remicade treatment.
Flare-ups during pregnancies only (so far).
Controlled: Prednisone, 40mg/ed. for 30 week @ time of diagnosis.
No maintenance drugs.
Supplements, Fiber, Probiotics


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/16/2009 10:52 AM (GMT -6)   
Your story is a bit strange. But what comes to mind at the moment is IBS. Have you ever been told you have IBS? Are they 100% positive that you have Uc?
 @--->--SHERRY--<---@
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UCMommyof2
New Member


Date Joined Mar 2008
Total Posts : 19
   Posted 1/16/2009 10:59 AM (GMT -6)   
When I had my sigmoidoscopy they found ulcers in my colon/rectum and my blood work came back with the tecnician saying all of my tested levels fit the catagory of colitis. I have not had a colonoscopy yet, I need to call my GI and have that take care of since I am pretty much in remission, except for the last 48 hours. If I do have UC I'd like to know how extensive it is.

For the last 10 years I threw my symptoms as IBS but the flare I had in 07-08 with the mucus/pus secretions and the intense pressure to go kind of threw that out the window.... plus the special gas and that specific horrible smell during bathroom trips. Then I thought, ok maybe it's Chron's but I would HOPE my GI specialist would know the different striations between "cobblestone" Chron's colon and an "ulcerated" UC colon.

I've read alot where it said a small number of people don't have bloody diarrhea, but why is it that I have yet to find ONE other person, you know??
28 yr. old Mother of 2 in NY
Diagnosed in 2007. Currently in remission.
Family history: Mother with Active UC, 30+ years on Remicade treatment.
Flare-ups during pregnancies only (so far).
Controlled: Prednisone, 40mg/ed. for 30 week @ time of diagnosis.
No maintenance drugs.
Supplements, Fiber, Probiotics


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 1/16/2009 11:38 AM (GMT -6)   
When I had my colonoscopy they did a biopsy which confirmed UC. If you have not had a biopsy I would request one just to confirm. I do know that some people actually experience constipation instead of diarrhea and some have bouts of both so I am not certain that your lack of all symptoms means you do not have UC - but you never know...

Before I was diagnosed I had problems with constipation for years and I now wonder if it was UC related. I only have the bloody diarrhea when I am in a bad flare but I understand your questioning it. It is interesting to hear your pregnancy stories because I discovered I had UC due to flaring right after I gave birth to my daughter... I think pg hormones can either help UC or irritate it because I have seen many posts about people who saw changes (both good and bad) while they were pregnant...
Dx 2006 right after the birth of my daughter
Lialda now down to 1 pill a day!
Canasa on and off as needed
Probiotics Daily
 


Cfromutah
Regular Member


Date Joined Mar 2007
Total Posts : 369
   Posted 1/16/2009 12:01 PM (GMT -6)   
My opinion is that UC is caused in part by a magnesium deficiency or imbalance. When you were getting pregnant your body was using up its magnesium reserves for the baby and that's why your symptoms would come and go as you got pregnant. Your symptoms now without you being pregnant are probably because you just aren't consuming enough magnesium in your diet. Try adding high magnesium foods to your diet. Foods high in beta carotene helps too in addition to the high magnesium foods. Also for the first long while of having UC my symptoms were formed stools with only mucus but later that changed so you probably just haven't reached the D and lots of blood stage yet. Read the sunflower seeds and spinach posts. Those two foods contain the needed nutrients to get things under control in many people.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4177
   Posted 1/16/2009 12:27 PM (GMT -6)   
Why didn't your doctors put you on any maintenance meds? I feel you should be on something.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


UCMommyof2
New Member


Date Joined Mar 2008
Total Posts : 19
   Posted 1/16/2009 12:32 PM (GMT -6)   
So UC changes and constantly forms (worsens) the longer you have it? It makes sense! I will really look into that magnesium deficiency. I have also been researching some additional supplements.. I take Fiber but maybe I need a specific fiber? Fish Oil and VSL# 3 Probiotics. I have had a biopsy, during my sigmoidoscopy. (boy those sure are painful during a flare up!!) I called my GI today and made an appt. for 2 weeks from now. I am going to get all of my ducks in a row here and if these recent symptoms subside, so much the better and if they don't I am going to nip this one in the bud. Either way I want to schedule a colonoscopy. I really appreciate your replies ladies!
28 yr. old Mother of 2 in NY
Diagnosed in 2007. Currently in remission.
Family history: Mother with Active UC, 30+ years on Remicade treatment.
Flare-ups during pregnancies only (so far).
Controlled: Prednisone, 40mg/ed. for 30 week @ time of diagnosis.
No maintenance drugs.
Supplements, Fiber, Probiotics


UCMommyof2
New Member


Date Joined Mar 2008
Total Posts : 19
   Posted 1/16/2009 12:35 PM (GMT -6)   
Sara I don't know why. I have the same GI as my mother and she is on maintenance meds, the apple doesn't fall far from the tree over here....

If he were to suggest meds, what are your opinions on the best UC active flare and maintenance meds? If he suggests Prednisone again (let's to say I am starting another flare) then I am walking out! 30 weeks of that crap is enough to last me a lifetime!
28 yr. old Mother of 2 in NY
Diagnosed in 2007. Currently in remission.
Family history: Mother with Active UC, 30+ years on Remicade treatment.
Flare-ups during pregnancies only (so far).
Controlled: Prednisone, 40mg/ed. for 30 week @ time of diagnosis.
No maintenance drugs.
Supplements, Fiber, Probiotics


Cfromutah
Regular Member


Date Joined Mar 2007
Total Posts : 369
   Posted 1/16/2009 1:00 PM (GMT -6)   
Before I learned how to control my UC with high magnesium and high beta carotene foods my symptoms progressively got worse, probably because I became more and more deficient in nutrients. Its kind of like a double edge sword, the worse your symptoms are the less foods you dare to eat such as nuts and seeds which contain lots of magnesium and vegetables which contain beta carotene so its a snowball effect and symptoms  get worse and worse from not having the proper nutrients. Now that I consume high magnesium and high beta carotene foods I have been in remission for over two and a half years. Before I started eating those foods no medications I tried helped me much and at a point was in a two year non stop extremely severe flare.

Post Edited (Cfromutah) : 1/16/2009 12:38:34 PM (GMT-7)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/16/2009 1:08 PM (GMT -6)   
UC will not necessarily get worse the longer you have it...researchers have found a cluster of genes that actually determine the severity and behavior of the disease over time and UC is also very individualistic, which is why the sunflower/spinach theory will not work for all.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Cfromutah
Regular Member


Date Joined Mar 2007
Total Posts : 369
   Posted 1/16/2009 1:18 PM (GMT -6)   
so far  from what I have seen from people that have tried it on this forum it has helped way more people than it has not helped and maybe some of the people that it hasn't helped need to stick to it longer. Also it has a  better track record than any medication I have seen people try except for maybe pred and it seems to be right up there with pred in terms of effectiveness, and its healthy to boot. Not saying it will work for "all" but its definitely worth a try.

Post Edited (Cfromutah) : 1/16/2009 12:50:26 PM (GMT-7)


UCMommyof2
New Member


Date Joined Mar 2008
Total Posts : 19
   Posted 1/16/2009 1:21 PM (GMT -6)   
The cluster of genes bit interests me alot, because my UC appears to be genetic, I can probably bet money that my UC will end up similar to my mother's UC, you think?
28 yr. old Mother of 2 in NY
Diagnosed in 2007. Currently in remission.
Family history: Mother with Active UC, 30+ years on Remicade treatment.
Flare-ups during pregnancies only (so far).
Controlled: Prednisone, 40mg/ed. for 30 week @ time of diagnosis.
No maintenance drugs.
Supplements, Fiber, Probiotics


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 1/16/2009 1:50 PM (GMT -6)   
I can tell you my UC is caused by an autoimmune disorder, which means I will always have it although it will not always be active. Autoimmune problems often (but not always) have genetic links. My grandmother also had UC, she battled it for many, many years although she was diagnosed very late in her life. There are others in my family who have a variety of autoimmune diseases as well. I was tested because of some other issues I was having prior to UC and am ANA positive which is suggestive of an autoimmune disorder. It might be interesting to ask for an ANA blood test. I would not be surprised to see both you and your mom come up ANA positive.
Dx 2006 right after the birth of my daughter
Lialda now down to 1 pill a day!
Canasa on and off as needed
Probiotics Daily
 


Cfromutah
Regular Member


Date Joined Mar 2007
Total Posts : 369
   Posted 1/16/2009 1:58 PM (GMT -6)   
I agree with you that its an auto immune disorder. Auto autoimmune diseases are caused by cells not communicating properly and mistaking body parts for something foreign and attacking them. Both magnesium and beta carotene are needed for proper cell communication. I have experimented a lot with high magnesium and beta carotene diet and I can make UC symptoms come and go by altering the levels of these nutrients in my body. Believe me or not I have complete control of this disease.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 1/16/2009 2:29 PM (GMT -6)   
     Your symptoms are exactly like the symptoms I exhibited ten years ago when I was first diagnosed.  You have mucus in your stool and I know what you mean by the awful stench.  I thought something had died inside of me....really bad.  Actually, I was afraid it was cancer.  Guess that was in the back of your mind too huh?
     The best thing to do is get a colonoscopy.  That will clarify things and the GI doctor should put you on some kind of med depending on the extent of your condition.  They started me on Asacol but switched to Colazal because my ulcerations are primarily in my rectal area.  I have been on the 6MP for about four years now.  I know what you mean about the prednisone.  This past year has been a difficult one for me.  I was hospitalized (only second time since getting this disease, first time was when I was diagnosed) for ten days in May.  I was on the prednisone for seven months.  Every time I was weaned off, two weeks later, boom, flared up again.  Only when my GI doctor boosted the prednisone up to 40 mgm to jump start, with a taper of 10 mgm per week, did I finally reach remission.  I didn't get this dreaded illness until I was 52 but remember having IBS as a kid and suffered with it for years.  As a result of the extended prednisone use I now have osteoporosis.
     Another thing.  I could definitely NOt tolerate fiber when flaring.  It made my symptoms MUCH worse.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/16/2009 8:04 PM (GMT -6)   
UCMommyof2 said...
The cluster of genes bit interests me alot, because my UC appears to be genetic, I can probably bet money that my UC will end up similar to my mother's UC, you think?

No necessarily, my mom has UC and I have crohn's (specifically crohn's colitis) with IBD being so individualistic I think reagrdless of your mom having UC as well, your genes are programmed (so to speak) to you, not to your mom, so you could very easily be a mild case with your mom being severe or moderate, or vise versa.
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)

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