Hi girls. I am in a flare right now, and it is getting worse at a scary fast rate. I am losing a lot of blood, starting to look very pale and my energy is gone. My period is just ramping up, which is just going to add insult to injury here.
Any prayers or good thoughts that I can get out of this quickly and that things don't deteriorate too much further would be greatly appreciated. Hopefully I won't have to layer in too many more additional meds.
Gosh, Laura. That is awful. At what point do you go in?
I am so sorry. It has to be so hard to deal with.
My thoughts and prayers are with you.
Honestly, I probably should have called already. I tend to hope that I can get things back under control, but right now I am not sure that is going to happen. But also, things get bad quickly. Saturday wasn't too bad, but then all of a sudden yesterday was, and today is worse.
The reasons I haven't called yet are twofold-I am due for an injection on Wednesday, and I am hoping it might help (in fact I might do it early), and my period is starting, and sometimes things will calm down once that is past.
It isn't as bad as it was before I was hospitalized, which was between 10-20 times a day in the bathroom (sometimes more) passing mostly blood and nothing more. Right now I am at about 6-7 times a days-I am passing a lot of blood, but most days more than half of the time it is not just blood alone. But this is the worst things have been since I started in this trial. The Humira is definitely losing effectiveness for me, which is discouraging.
I am also going to get some iron tomorrow and start back on that, and get some Metamucil for bulking. Gross, I know, but it is what it is.
Oh no, I hope this passes quickly and you get better!! Can you explain to me what exactly a flare up is?
Sure (but it is TMI, just so that you know). Ulcerative Colitis is considered auto-immune, so my immune system goes haywire and attacks my colon. Inflammation and ulcers follow, which cause a lot of issues. Everyone who has this disease has some different symptoms, different triggers, etc, so I can only speak to my own disease (like Tracy and Victoria-where is she, btw?-would have to tell you how things affect them).
For me, when I am flaring, I have urgency to get to the bathroom. Often times in the morning (and when I have been in my worst flares), I might have 30 seconds tops to get to the bathroom, despite my best efforts to extend that time frame. I have been very fortunate in that I have not had accidents. Most UC'ers will and do have accidents at some point in time in their lives.
Once I get to the bathroom, my bowel movements include large quantities of blood and mucus. Sometimes the water in the bowel is completely red, other times the blood is less and just in and around the movement itself. Mornings are generally worst for this as well.
There is an increase in frequency-so whereas I am "normally" a once or twice a day type of person, I feel the urge to go to the bathroom more like 6-7 times a day. This is still not considered to be too bad. Some people in the midst of really severe flares will go 30-50 times a day. Many people with severe disease opt for surgery, though I am not sure that surgery is an option for me at this time, as I may have a combo of Crohns and UC. (I haven't been tested for that because treatment for both is the same-it only makes a difference in the face of surgery)
Also, when my flares get bad, while I am on the pot, I have that bearing down urge that is often unproductive because there isn't anything to get out aside from blood. I also get a lot of bloating and gas, but not too much pain, which is very common to the disease.
People have a very hard time understanding it because most of us are still up and walking around, doing our day to day tasks as well as we can. I know the moms at the preschool have no idea how sick I am right now. These things come on fast (and for me, stress has been the biggest trigger as of late-and much of that is due to my PMDD which developed as a result of my being on pred for the UC!!!! Ugh.), and with the amount of blood loss that I experience, it can get dangerous quickly. UC is rarely life threatening, but can completely strip you of any quality of life. I am not at that stage right now, thank goodness, and I am praying I can get back on track soon. I will likely have to switch to a different rectal med (I use a suppository nightly) and/or maybe up or switch my maintenance meds. I am hoping to avoid steroids because oral have major side effects for me, and rectal steroids generally immediately make things worse.
Sorry for going on and on about it! Please don't hesitate to ask any questions about it. I know it isn't exactly pleasant conversation, but luckily when dealing with a group of moms like this, people don't mind as much talking about poop!!
dont let yourself go you need to take care of you to take care of everyone else. I know how easy it is to put off.
Hopefully it will calm down quickly.
HUGS if you need anything lmk.
Thanks Tracy-it is so frustrating, isn't it??? I know I should just give it up and call already, I just keep hoping things will calm down and I won't need to.
At least I know if I need to talk to them or see them, I can get to them quickly-no long waits like you are dealing with. People with flaring diseases can't wait!!!!!
Thanks for taking the time to explain it throughly. Now I understand what it really is. That has to really suck, literally! =( What are the options to "fix" that? Only meds? Or do you have to change your diet? surgery isnt a option? What causes/triggers it? (in your situation besides stress)