Introduction:
43 year female, full-time employed, married, 2 children 14 and 3. Never had any stomach/intestinal problems before. This is REALLY effecting my life, constantly worried that a bathroom is available
UC Symptoms:
Officially diagnosed with UC in 2008 (after giving birth to my second child) after the first colonoscopy but the GI doctor suspected it in 2007 during my pregnancy.
Symptons: Bloody stool, lots of mucus, urgency (loose stool only when aggravated by something else), exhaustion, pain in feet, hands, and sores on my scalp.
LOTS of stress in my life… 2002 brain surgery, 2003 spinal surgery (now missing the T1 spinal bone, which totally restricts my ability to do fun stuff, no roller-coaster, no skiing etc, otherwise i might literally loose my head), 2003 diagnosis with sarcoidosis, 2005 death of dad, 2006 death of father-in-law, 2007 miscarriage and through the entire mess addiction problems with family members .
Very active between April 2008 – Jan. 2010 (i could not hold my baby because I had to sit in the bathroom or RUN TO IT)
Remission Jan. 2010 – May 2011 – went on a trip by myself to a wedding in Europe, Flare was really bad – but when i returned i was miraculously healed.
It has been active again since May of 2011 due to a major dentist procedure rootcanals on 2 teeth. Since then it has been pretty consistent,, running to the bathroom shortly after i get up, and several times thereafter (usually ~ 5 times a day) then there are the days when I go up to 20 times a day especially when i have another problem, like a bad cold… always makes my colon even worse.
I have NEVER been to the hospital for that.
I had to already change my life by finding a job close to my house since sitting in traffic and commuting makes me just CRAZY, and the need to use the bathroom is overwhelming, I already sat at the side of the road and also visited several jon-dons on construction sites!
Everyone on the forum seems to go to the hospital – what is your criteria?
Also, do you all LOOSE weight, i continue to pack it on, therefore no prednisone for me,
started with 4x week exercise now, but working/being a mother/having a house there are only so many hours in the day…..
Food doesn’t seem to make a difference… have not found any pattern.
Medications currently taken: Canasa, Hydrocortisone enema, Mesalamine tablets (9 per day)
written by Sabine
Submitted in the colitis venting area
43 year female, previously had a super healthy stomach!
I am so sorry that you’re having a rough time. I feel your pain!! Yes, I lost a lot of weight (~45 lbs in a month). I’m surprised that you’re able to keep your weight on. Good job!! Not sure what you’re doing there, but it seems to be working.
I was diagnosed in the summer of 2011. I was so sick that I ended up in the emergency room. I was severly dehydrated, despite me constantly drinking TONS of Gatorade. I had a lot of blood loss & needed several transfusions. Then, two weeks later I woke up & had to run to the bathroom (as usual). However, I probably lost 2-3 pints of blood in that one sitting. My mom freaked out & called the doctor & he said I needed to get to the ER asap.
So as far as any criteria is concerned, just watch how much blood you see. If you start to see so much that it’s freaking you out, then you should 1) call your doctor asap, or 2) go to the hospital. Also, make sure you drink a lot of fluids. Nothing is worse than being pumped with fluids in the ER (it makes you have to go to the bathroom — a lot!!). I hope this helps. Just keep in touch with your doctor.
It’s such a tough call for the hospital. I have recently gotten out myself. Anemia is really bad with my UC. I lose a bunch of blood during flares. I had 2 blood transfusions and 4 iron infusions as well as all of the steroids. Thankfully, my body reacts well to steroids. I finally made the call to go to the hospital after I was having so much pain and could get zero relief. Good luck to you. Feeling your pain.
Hi Sabine…
A bit off topic, but could you please tell me if you took any antibiotics, or any other precsrition drugs, before any of these flares? Like, with your various surgeries, what drugs did you take? Did you have any infections that required antibiotics, or other prescrition drugs?
Before you were initially diagnosed with UC (the first time), what meds had you been on in your lietime?
I am trying to correlate this god awful disease in any way that I can, with anything we may have been prescribed over our lives, so that we may all possibly figure out, once and for all, why this has happened to us in the first place.
Cheers,
Bev:)
Hi Bev,
thanks for your feedback. To respond to your question: Since being diagnosed with UC I am ONLY taking Antibiotics IF i absolutely cannot deal with the ‘other’ infections i might have at the time…. last example = bronchitis.
that might happen maybe twice a year. But usually my UC got already a lot worse due to the ‘other’ infection in my body.
I honestly cannot tell you what other medications I took through the process of my life, but I can tell you that I have allergies to a lot of them…. Dilantin, Sulfa, Penecillin, codine….
BEST OF LUCK to your quest… I can try to dig into some medical records some more if necessary to try to find some of the meds… but considering that i have been treated on 3 continents I just don’t know how i can check a lot of the earlier stuff.
Thanks so much
Sabine
Thanks for replying back Sabine.
I still do believe that drugs play a role in our acquiring UC. Then, they play roles in our flares.
Thanks for the encouragement…so far, so good!
Cheers,
Bev:)
Bev, I have a feeling you are right. My diagnosis started immediately after progesterone use. I can’t help but think they are correlated as I never had any issues prior.
I think you have to go by how you feel. Have you reached a point that you need help?
Hi Sabine. Sorry to hear you’re feeling rubbish. I would say, personally, that 20 times a day is a flare, blood or no blood, and you should see a physician – I don’t see how you can retain enough electrolytes when you’re passing that many stools a day. But up to six BMS in the morning would still, for me, be straight onto the SCD starter diet and taking white clay before meals for a few days.
Did they not give you cortisone for the Sarcoidosis? They are nasty things, but a short course of steroids might get you back on a better track. BTW: I know from the SCD forum that having a flare after dental treatment is very common – I myself am often ill for a while after dental treatment (probably all the sh1t in the amalgam).
One other thing I pick up on from your post is that you strike me as a person who is quite hard on herself: skydiving, rollercoasters? Do you like the adrenalin surge? Generally not brilliant for UC – you need to stay calm and unstressed whenever you can, so if ou are doing hard exercise I would suggest changing to things like meditative walking, swimming and yoga, which would also help you deal with the terrible stresses you’ve been under.
Good luck and feel better soon. Trish. :)
HI Trish,
thanks so much for your response – you see it is not necessarily always ‘stool’… a lot is just mucus!
Never got a thing for the sarcoidosis since I never had any symptons. It was discovered ‘accidentally’ during a follow-up mri done on my neck, the large ‘growth’ like structure was found in my lung.
And then I was on a prolonged Prednisone treatment for my UC – i guess all in all about 3 months – which also seems to be the medication of choice for Sarcoidosis. They never seemed to have done too much other than give me a moon face and give me a hard time to loose weight/maintain weight (that was right after pregnancy).
I always just tried to have fun, but after my surgeries i had to absolutely slow down, after my brain surgery i had to relearn how to walk.
I cannot distinguish why i feel so wore out/tired – is it because something is going on internally that I cnanot see due to the UC or sarcoidosis, or is it because of just being a working mom or is it because i am getting older….
That’s why I don’t jump up and go to the doctors any more…. and to be honest I have kind of lost faith, tired of all the prodding around and poking and trying this and trying that and every time they check something out they migth find something new….
I have my family to take care of – I do believe though that when i tell that I am tired, people just don’t understand how exhausted and tired a person with UC can be.
So, i believe that a lot of it is mind over matter and maybe I will try to the White Chalk – never heard of that one before.
Thanks for the tip – that sounds easy!
Take good care of yourself as I promise to take better care of myself!
Sabine
I’m taking the same meds, Sabine. Was in the hospital for a week b/c of an intestinal infection I acquired during a flare. I also pack on the weight-don’t understand why. Good luck! Removing colas (especially diet ones) and wheat has helped me quite a bit.
Hello, I was diagnosed correctly since 2008! I dont have flares nit unless im under a lot of stress.. and currently im going thru a flare that has me in so much pain im having to breath like im in labor. Although there is blood in my soll its not a lit. But this pain is almost unbearable. My doctor has not responded to my calls in 3 days if I coukd just get something for pain. Any suggestions. I dont have insurance however wjen I went to the er they didnt check me they asked me what was wrong and gave me something for pain and sent me on my way. Any suggestions fir over the counter pain meds..
Felicia, something that doesn’t get talked about too much, unless you look for it, is smoking a little bit of weed for cramps and pain relief. I went for a week of almost no sleep due to hourly bathroom visits, which would render me useless and unable to work, until I started to smoke a little before bed. Now I can sleep right through. I don’t really like the stoned feeling, so I have a little one during the day so Im still functional, and a big one right before I go to bed.It knocks me out, and immidiately dries me up inside. It may not be for everyone, but definately works for me.
I’m having a bad flare up unable to eat or drink the nausea starred the other day. When I go to the bathroom it’s lil poop but a good bit of Lucas. I’m in horrible pain. Sweating cold chills. Should I go to the Dr?
Hi Christy,
Thank you for writing in, and yes, if you are in horrible pain and wondering if you should go to the doctor, think no more…go see the doctor!
I hope you feel better very soon, and good luck with the doc.
Adam