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Ulcerative Colitis
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Posted 6/1/2008 7:47 AM (GMT -6)
I was just wondering how you all are and if/what challenges you are facing right now due to your UC or meds if you want to share.  :-)

 I have been on Humira almost 3 months, I have been doing better!  Less bms, much less bleeding, and more energy.  I have been having hair loss, shakes and nausea, and some headaches and leg pains, but I would rather be like this than how I was 3 months ago!  I wish you all the best of health.

Posted 6/1/2008 9:48 AM (GMT -6)
I'm not really facing many challenges with my Uc. Other then the norm such as horrible mornings. But now that I'm back on the steroid enemas I only go 1-2xs a day now and *happy dance* formed bms! :) Not to mention that horrible hemmie of mine. But that seems to be getting better. It didn't hurt as much when I used the enema last night. I just hate being on the steroid e's - when I start back on them, the side effects hit me almost instantly as opposed to building up over time. Guess my body has the memory of them or something.
Posted 6/1/2008 11:53 AM (GMT -6)
I'm doing really well. No bleeding, mucus or pain. I go about three times a day, but soft and formed and no problems. No ulcers in my colon for the past year! If I weren't still dealing with some of the leftovers from steroids, I might forget once in a while that I even have UC.
Posted 6/1/2008 12:16 PM (GMT -6)
I am doing pretty good right now. I am in remission. I usually flare once a year in January, and get it in control in 3 months. The rest of the year i go into remission. That is my pattern. I could set my watch to it
Posted 6/1/2008 2:56 PM (GMT -6)

I'm doing ok too- going about 4-6 times a day, soft but formed, no D, sometimes a little blood. Mostly sleeping thru the night, up 1 or 2 times with just gas & mucous. Going for an infusion on Tuesday, it's the 6 week mark. I still get urgency but I can hold it just a little bit longer- I now have about 2 minutes to get to a toilet as opposed to 30 seconds! Plus it's not too often- I just went to a museum in Boston today, a 1 1/2-2 hour car trip both ways & had no problems whatsoever, so I guess all is well.

Posted 6/1/2008 8:49 PM (GMT -6)
I am doing well, too! Still in remission -- 1-2 formed bowel movements per day, no pain, no mucus, no blood, no urgency.

Still a bit anemic from the pregnancy, but my iron levels are rising, so it looks like I will be able to avoid an infusion. The iron pills are working.

Aside from that, I am just sleep-deprived! My son still isn't sleeping through the night (gets up once or twice), and now that my maternity leave has ended, I am back to work full-time. It's a juggling act... my husband and I are exhausted. BUT... it is all worth it. We love this little guy so much.

So, all in all, I am doing very well! Very happy...
Posted 6/2/2008 9:24 AM (GMT -6)
I'm doing good, I've been in remission for 2 yrs. now Only go to the bathroom usually once a day, sometimes 2 every other month. My checkup is next monday, so now I'm worried, thats only because of the lab work. It's more mental for me. After I see the GI, I can go back to having fun. Lab work scares me.
Posted 6/2/2008 9:33 AM (GMT -6)
I am currently in remission, no urgency, blood, D, or mucous. One BM per day. I have only flared in spring and the last two I got back into remission within a month.
Posted 6/2/2008 9:48 AM (GMT -6)
craptastic.

UC: flaring since 5/13 w/blood, mucous, D, not formed. 5 to 10 times a day. Taking steriod e's for two weeks, not much improvement, calling GI on Wed unless a miracle happens. If fail aza, then Remi, then surgery unless I could get approved for Humira.

Kidneys: If I don't reach remission by Oct, Neph says I prob have FSGS, which means kidney transplant.

Mentally: I am turning very bitter and angry. I need to seek help from a therapist.

Other than that awesome.
Posted 6/2/2008 11:04 AM (GMT -6)

mad  pretty crappy

I was in a mini-flare February--April. For the last month, I've been in a major flare that just seems to get worse no matter what medications or probiotics or natural remedies I try. I've been going to the bathroom about 10x/day, mostly in the morning through a couple hours after lunch. My stools have been loose and I've been having cramping almost daily. I was on Rifaximin for a week--it made things normal for one day, but the rest of the days were the worst I've had since before being diagnosed. I had to quit my job after a week b/c everything's just getting worse. My boss emailed me and told me that I should have stuck with it a bit longer. But I told her that if I couldn't even go grocery shopping yesterday for more than 15 mins. b/c I got light-headed and weak, then I probably shouldn't look after preschoolers for a few hours. I've been feeling light-headed and tired since I woke up today, even though I got 10 hours of sleep last night. I haven't been feeling this tired and weak since I needed my blood transfusions last year, but my blood labs were normal as of a couple weeks ago and I'm not pale like I was last year before I had my transfusions. I'm seeing my GI on Thursday to see what my options are since I refuse to take prednisone.

Sorry that this is one large blob of words and probably not very coherent.

Posted 6/2/2008 11:14 AM (GMT -6)
The good news: My two year flare seems to have ended (scared to say remission but i think i'm there!) and remicade is to thank.

BUT....

Many know i have complained of nausea in the past. Well I'm more nauseas than ever. It's very debilitating. Without high doses of zofran I am throwing up every few hours. With zofran and other herbal remidies I can eat some and even have an hour or so of productivity until the neausea is again unbarable.

My GI has given up. He has done every test he can think of. I see him tomorow and am going to ask for the name of an ENT. The only other thing I can think of is an inner ear problem. We've ruled out food because i went without zofran for a few days and couldn't even hold water. No food and still bad.

Mentally: very depressed. My UC is finally better and I am still sick and doctors are giving me no hope. I'm so angry, so sad, so lonely from being stuck at home for two years. I just want my life back.
Posted 6/2/2008 6:56 PM (GMT -6)
Thanks for asking about us all, Princess Colon. Luckily I recovered from mini-flare last July-- caught it quickly. Also, knees I banged up in accidental fall 3 weeks ago are about 95% better. Have gastro check-up tomorrow. Did bloods with internist last month & results were good except that my vitamin D level dropped again; gastro probably won't like that. Colazal is helping me to retain remission, but it makes me shed lots of hair, aaaarrrg! No way around that ... Glad to read that you're making some progress & wish you all the best because you surely deserve it. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 6/2/2008 7:34 PM (GMT -6)
Geez - with so many good feelings, I hate to be one of the few downers :(

I stared flaring March 17th. Spent a few days in the hospital in April. Finished my pred taper May 25. Now things are back to bad :( Doc gave me two options - pred again with a slower taper or Remi. I jumped on the Remi bandwagon. I've heard so many positive stories that I've decided to go for it. Previously I was anti-remi for me. But right now I want my life back and I'm willing to try it. Pred is just destroying me!

I'm so glad that so many are feeling so well!
Posted 6/2/2008 9:14 PM (GMT -6)
I am glad that so many are doing well too. And sorry to those who aren't, but isn't it good to be able to come here and tell people who truly understand? No "I am fine, how are you?" nonsense! I had violent D after posting this, I feel like I have to keep quiet or I jinx myself, it's weird. Take care everybody.
Posted 6/3/2008 7:49 AM (GMT -6)
In a flare for the last month. No blood, but D 3-8 times a day. I've been on prednisone for a year-and-a-half and every time I taper to the low doses (5 or 2.5; sometimes 10), I go into a flare. I've got a call in to my GI. I WON'T increase the prednisone again myself as I want off of it! The last time I saw my GI he said he'd maybe try me on 6-MP again, but he's taken me off of that a couple times as it seems to lower my white count. And about four years ago it was lowered as it was becoming toxic to my liver. Maybe it's time to try remicade. I'm not at a point where I would consider surgery yet.
Posted 6/3/2008 8:28 AM (GMT -6)

I seem to have had a settled routine for the past year. Three times daily all formed and no blood for 10 months now.

I have the odd day of maybe going more but apart from that all is well. Nerves thing really  still bother me!! its the fear of getting ill again or fear of no public toilets.

Posted 6/3/2008 9:13 AM (GMT -6)
I'm doing very good, have been in remission since Early March, getting my 3rd remicade infusion Friday (no side effects)

I am having a little trouble getting off pred.

I tried to drop from 10mg to zero  2 weeks ago and got really worn down, headaches etc. instantly

I am now down from 10mg to 5 mgs though, and going to try 5mg every other day next week.

Posted 6/3/2008 9:24 AM (GMT -6)

For the 8 or so years I've been dealing with UC, I haven't yet figured out what a remission feels like. I'm either on Pred, which minimizes the symptoms, or running to the bathroom. I don't know if I am in a constant flare because it is always there and, except for the pred, always seems extreme. So the words remission and flare don't have much meaning to me.

Just called my GI Friday; spent the past two months trying to taper to 7.5 mg of pred. Now having 5-6 bad days out of the week instead of 1-2 when I'm at 15mg. Counted 33 trips to the bathroom in one 24 hour period last week, which is what did it for me. Although my GI describes mu UC as moderate, I just can't seem to find any med. or probiotic that convincingly works.

Posted 6/3/2008 11:08 AM (GMT -6)

I am so glad so many of you are feeling well. I hope everyone else starts to feel better soon.

Bratcat is feeling a bit better. I guess you could say that she is coming out of her flare. But this last one took a big toll on her. The prednisone side effects have been horrible. Missing so much school and work this spring has her scrambling to catch up before the end of the school year. The remicade is probably working but not as well as the doctor feels it should work. We think the prednisone is what is keeping/getting her in remission. Can't live on prednisone anymore.

We have been looking into surgery. She is scheduled for step 1 on June 27.  This is on our minds 24/7. It has become my obsession. She is looking forward to it (if she doesn't think too much about it). She doesn't want to deal with another school year like she had this year (2 flares, 16 weeks of missed school). Next year is her senior year. So we figure have the surgery right after school ends, have the summer to recuperate and adjust, and hopefully, have an uneventful, healthy, happy senior year where she doesn't have to drop out of so many things because of this disease.

Posted 6/3/2008 11:59 AM (GMT -6)
Well, I'm back here after a few months which I guess means that I'm seeing a return of symptoms. In general though, I'm doing pretty well, and so glad to hear that many of you are as well. I'm sorry to hear that some of you are still suffering and hope you find some relief soon.

I took a course of Prednisone near the beginning of the year that seemed to quiet things down to point that I could nearly forget I had UC. However, I had to taper off all my meds in March because I quit my job, moved, and lost my insurance. Fortunately, the move resulted in a decrease in stress, so I think that helped keep things stable for a while. But I'm starting to feel a flare coming on...I hope I'm wrong. No blood yet, but some urgency and D once or twice a day. And last month I was all bloated and had to drink coffee to get things moving, though it was still all D. I've also been feeling unnaturally tired despite getting 8-10 hours of sleep each night and having some nausea too. All in all, not so bad, though I really need to find a way to get insurance in case things progress.
Posted 6/3/2008 4:43 PM (GMT -6)

Was doing great.  I had a wonderful year until this last month.  From July of 2007 until a month ago I was in remission.  Enough of a remission that I made it through a year of teaching (until now) without any problems and I even went to Mazatlan Mexico for spring break and had a wonderful time. scool

But.... my pain in the a.. is back again.  I am a little upset but... I try to keep thinking about all the living I did this past year and hope I will get there again soon.  On pred again 50 mg to start.  Hope to see some result in the next week. eyes

I do get annoyed when I go to the GI or GP when they make the comment "FLARED ON 6-MP... OH THATS NOT GOOD".  Why do they have to be so down.  Maybe the meds. need to be tweeked a little.  What is so wrong with flaring after a year, while on 6 mP.  I was under alot of stress...  Change of season... things happen.  This is why I think alot of people don't come clean with their doctors.  They don't want to rain cloud anymore. confused

 

Posted 6/3/2008 7:38 PM (GMT -6)
After being diagnosed with severe pancolitis 2 years ago, I'm doing great on Asacol and a good probiotic. 

Posted 6/4/2008 2:43 AM (GMT -6)
I think the meds have started to kick in as no blood for 2days and semi formed bm but lower back and legs ache as well as hips and right knee eye drps also starting to make a differance as have Uveitis at moment to
BUT am feeling much better than i did so things are looking up.
Posted 6/4/2008 2:49 AM (GMT -6)
I went into remission about August last year. However it was a tough 9 months with lots of IBS and GERD issues. In March I went off Asacol and discovered that most of my GERD and stomach issues were caused by this drug. I then tripled my probiotc dose and that cured the IBS. Right now I'm feeling brilliant, 1 BM a day, no meds, just three daily doses of 4 different probiotic strains.

The headaches, lack of energy, lack of appetite, brain fog all disappeared since I started probiotics as well.

I'm going nowhere near an IBD maintenance drug unless I flare very very badly.

Big thanks to all who helped me get to this stage from this site.

D

 

Posted 6/4/2008 6:39 AM (GMT -6)
I feel soooooo good, I've been in remission since January. I feel kind of guilty about how well I'm doing and then seeing so many that are suffering so badly. I was in the worst flare I ever had and it lasted 2 long years, there were days when I thought..........I just can't keep going on like this. Now things have been great. usually 2 bms a day, always in the morning. I truly wish that everybody could get into remission or at least have a period of time where the UC isn't controlling their lives at all times. I had a really strange dream lastnight. I dreamt that I was in some public place, lots of people around and I had to use the potty, really bad, and it's right in the middle of this big room that is full of people. I did my business and there was quite a bit of blood, then the darn potty wouldn't flush. I got up and everybody was either laughing or making comments about what I did in the potty. I was sooooo embarassed. Then I woke up and was so releived to realize that it was just a dream. Never had one like that before.
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