HealingWell
Search Close Search
☰

Flare up....when will it end??

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/20/2010 8:27 PM (GMT 0)
I am in a flare up, and have been since a couple days after Christmas.  I have had a remicade infusion and have been on predisone since it started.  I missed quite a few days of work, and keep hoping that it is gonna stop.  I was vomiting with every bowel movement since it started.  My doctors office staff are grumpy nasty women and I hate calling in to tell them I am still flaring.  It is almost as if it is an inconvienience for them. The last call I made I told the women I needed a remicade infusion and I am in pain and needed something for it  and she didn't tell my doctor about the pain.  I don't want to call and them think I am seeking pain med!   I am in so much pain. They have no idea what this is like! I am not seeing frank red blood in the toilet today or yesterday, and my movements are alot less frequent.  I actually didn't vomit today either, but my stool is black. And it is torture everytime I move my bowels!  I am asuming old blood.  I am hoping this is an indication that I am slowing up and starting to go into remission.  I am so tiered, this may sound awful, but I don't even want to wake up to deal with this ever again.  I can't handle it anymore.  I am sorry for being such a baby, but I am at my wits end!  How do you know if you are starting to heal?  Is the black blood and indication that I may be getting better??  How much more of this am I gonna have to take.  It has been 5 plus years with flare ups 2 to 3 times a year, most of the time ending up in the hospital and out of work!  I just want this to end! 
Posted 1/20/2010 10:18 PM (GMT 0)
It sounds like you should call and make an appointment as soon as possible to me. Darker blood/bowels suggests the bleeding is coming from higher up in your colon rather then nearer to the exit. I think that is more serious. Flares can get out of control and it seems better to try to stop the down turn sooner then later. Does your doctor schedule you for follow-ups to see how you are progressing?

F/49
Posted 1/21/2010 5:51 AM (GMT 0)
I agree with beeswax - I'd get another opinion
Sometimes a change of doctor can really help
Have you tried changing diet, losing weight, herbal remedies, excercise?
Try to keep positive, it sounds like you're coming out of this now.
there are a lot of posts here that have turned peoples lives around
Good luck
Posted 1/21/2010 5:10 PM (GMT 0)
I have been losing weight. I am already very slight. I am now 88lbs down from 102lbs. I have tried alot of different things. I am so tiered. My follow up is in March. I am going to change doctors. I am tiered of my flares just being managed. (and not really managed at all actually) If I think about it I have been in some kind of distress since July of last year with a total of maybe 1 month of comfort. I want to know what it is that is causeing these flares. I want to know why I have this disease, if it is caused by an allergy. I can't handle this anymore, and I am losing my mind along with my life. I think I should just not eat, but I am so hungry, so hungry.....I am gonna call him today. I just don't want to end up back in the hospital, having to go thru the ER, (an expense), and them trying to manage a flare, that they can't manage, anyway. I have been down this road 100 times and it is always the same thing. They give me large doses of iv steroids, so much so I can't even swallow. IV fluids. No TPN. It is the same treatment everytime. And I sit in a hosiptal bed, not able to sleep because I have a difficult roomate, or night shift nurses who think it's noon time, or a phone ringing off the hook because people are checking up on me, and if I don't answer keep calling and calling until they do get an answer. (I love those people by the way, they just don't get it) It stinks. I am very discouraged.
Posted 1/21/2010 5:44 PM (GMT 0)
It sounds like you can not afford to lose more weight... and are not doing well. If you do end up in the hospital, sometimes you can turn the ringer off on the phone so it does not disturb you. Call the doctor today! You don't need to be any worse off then you already are. It sounds like you may be anemic too. You might want to talk to the doctor about the staff not relaying information. Though I am sure you probably too worn down to deal with that. Hopefully you have someone who can be an advocate for you, like a go between person to get things moving in the way you need.
Posted 1/21/2010 5:49 PM (GMT 0)
Call the doc today and see if you can get in to see him asap.
His staff sound like losers....seems they don't know how to handle the distress his patients are experiencing.

q
Posted 1/21/2010 6:13 PM (GMT 0)
You sound like you are in a very similar situation to myself. I have had colitis now for 15 years, untreated. I have tried so many different kinds of medication, but each time nothing worked for me, making my symptoms worse, and most pills giving me severe stomach pains and vomiting.

I am very small as well, i always have been. I am around 7 stone, probably 6.5 stone now as i have been flaring since christmas. I tried going to my doctors today but know one could help me!! I was chasing after my doctor and consultant all day, and guess what, i didn't get to speak to either of them, and didn't get any treatment. So i have kind of figured out i am on my own with this one.

You might like to try what i am doing, which is looking into alternate treatments. I am getting allergy tested on Saturday. I have VSL 3 probiotics to start taking, and i am also going to give myself Vitamin E enemas.

I am also looking into Fecal transplantation, turmeric and probiotic enemas. I also need to change my diet as i have a very bland diet full of sugars and carbs which i think could be some of the problem. It will be interesting to see if i do have a food allergy or intolerance.

I know how desperate you feel, i feel the same, it feels like this is never going to end. It feels like it has taken over my life, my relationship with my husband is suffering, as well as my work and my kids.

If you want to talk, my email is in my profile.

Take care
x
Posted 1/21/2010 7:27 PM (GMT 0)
I know what you are going through. I have been in a flare since the second week of November. I have had 2 Remicade treatments and take all my prescribed meds. I have been on a gluten free diet but blew it over Thanksgiving big time. I am trying to recover but am now very low in iron (4 when it should be between 20 and 50) and have anemia. I am tired, have lose of concentration, pale, quiet and generally having to drag this old body to work each day. I am trying my best to eat as carefully as possible and although I have seen a little improvement it is just not going as quickly as it all came on.

My intention is just to keep persevering and hopefully I have learned my lesson about eating foods that are just not good for me.

Good luck to everyone trying to recover from slip ups during the holidays... I know what you are going through!
Posted 1/22/2010 3:14 PM (GMT 0)
Jodirilla, Please let us know how you are doing? Did you call the doctor yesterday??? Worried about you.

F/49
Posted 1/22/2010 5:21 PM (GMT 0)
Hope u r feeling better....do keep us posted.
Posted 1/23/2010 12:12 AM (GMT 0)
I called the doc yesterday, and thankfullly got a girl that was helpful. He increased my predisone and now I have pain medication, thank god!! Next week I am getting another infusion. If things are not better by monday I am going into the hospital. I am so sick of this yo yo!!
Posted 1/23/2010 12:17 AM (GMT 0)
Glad to hear from you and that you got some needed meds! Keep us update.
✚ New Topic ✚ Reply