Need some words of wisdom

New Topic Post Reply Printable Version
34 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

thisguy
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/2/2009 11:44 AM (GMT -6)   
Hello...I am new to the forum. I have been living with UC for about 11 years now and I'm going through a flare up. It's been about 3 weeks but the last 2 have been pretty difficult. Typical stuff - frequent bathroom trips, cramping, bleeding, mucus...the thrills of having the disease. I have probably lost 15 lbs. over the past two weeks and I am extremely weak. What is really getting to me is that if I stand up for more than 10 minutes I can't seem to catch my breath and I feel lightheaded. When I sit I feel better and when I lay down I feel fine.

I haven't had a flare up in about 3 years so I forget what it is like and I can handle the bathroom trips but I'm now getting worried that I'm so skinny and malnourished that it may be something else. Doctor is calling me this afternoon but I just forgot if the weight loss and weakness was part of the deal.

I'm on 9 Asacol pills a day and I just can't seem to regain any strength.

Thanks

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 562
   Posted 2/2/2009 11:53 AM (GMT -6)   

Hi,

Sorry to hear what you are going through.  It sounds like you are dehydrated as well as having a flare.  I'm glad you are talking with your doctor (GI?) this afternoon, as it sounds like the asacol isn't keeping the disease at bay anymore.  I hope you feel better real soon.  Please keep us updated.

Julia

 


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 2/2/2009 11:54 AM (GMT -6)   
I am glad your doctor is calling you today.  I understand about the weight loss.  I started my first flare ever last May.  The worst part was during the summer months.  I felt so neauseated that food was the last thing I wanted.  Sounds like you need to try and eat something - perhaps mashed potatoes.  When I was officially diagnosised in August I was told to eat only white meat, white rice, white bread, if I couldn't see thru it I couldn't drink it and the list goes on.  Try to eat something mild and see if that gives you some strength.
 
I'm sorry you feel so bad - UC is no fun, but keep moving forward.
 
Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa 2x a day
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
B12
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 2/2/2009 11:56 AM (GMT -6)   
Make some homemade shakes with plenty of protein and carbs to get some good fuel into your body. Can use a base of soy milk or almond milk if dairy is a problem, add half of a banana and some ground up almonds. Can add in blueberries/strawberries/raspberries or whatever you feel like. Frozen food isle has lots of choices.

Asacol never did anything for me, so you may want to consider rectal meds to get a better hold on things. You should post what you are diagnosed with in your sig so people can be a little more specific to your specific form of uc. Your doc should change up the meds if you are seeing him, or give you a script for something else.

I dropped from 155 to 140 in one flare in about three weeks, and that was no fun. I sit at 167 ish now so get fuel into you and just eat whatever you can. In one flare I ate baked potatoes for several days straight, along with shakes. Lack of fuel makes your car stall.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 2/2/2009 2:29 PM (GMT -6)   
Hi..welcome to the forum!

Ask your doc to prescribe rectal meds...I'd suggest either the Rowasa or if you're not in the US to ask for Salofalk retention enemas.

probiotics .... you should also consider them.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/4/2009 10:57 PM (GMT -6)   
thisguy - I'm not sure what happened when you talked to your doctor but after what I've been through the last week I would recommend that you check your pulse and blood pressure and if you can go see your doctor (just a GP is good enough). I was having similar feelings - lightheaded after standing for awhile, out of breath if I tried to do anything like walk to fast, but felt fine if I sat or laid down. It turned out that I was severely anemic in and I am still in the hospital after being admitted last Thursday night and being given 4 units of blood + saline. They also ran a bunch of tests and found some additional problems which is why I'm still in the hospital. Based upon what the doctor's have told me, a high pulse at rest (mine was 157 - should be approx 60-80) can actually permanently damage your heart if it goes on for too long. I hope that you are not in the same boat that I was last week but my recommendation is get checked out if at all possible. It's better to be safe than sorry.
Ducridr - 34 - female

Diagnosed w/ severe pancolitis 11/20/2007

Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15mg (started at 40mg Nov 08 - again), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day)


Suezer
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/4/2009 11:21 PM (GMT -6)   
Please be careful with this, I had gone 10 years without an UC attack, thought I was having one 2 weeks ago, but it turns up I have C- Diff from taking an antibiotic. It mimics UC, but is a dangerous infection that can cause serious health threatening disease if not treated.Please ask your Doctor to test you for C Diff! Take care.
 
~Suezer
 
I

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/4/2009 11:32 PM (GMT -6)   

Welcome :-)

First, feel better.

Try the rowasa and if that either doesn't work, or only works for awhile, then try cortifoam.


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*

Post Edited (bbc) : 2/4/2009 9:35:58 PM (GMT-7)


thisguy
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/5/2009 8:50 AM (GMT -6)   
Hey gang. Thank you so much for the support and wishes. I had some blood work done and it turns out my hemoglobin was a bit low and my white blood cell count was a bit high but the doc said it was nothing that required desperate measures. I am now on a hydrocortisone steroid enema which I started on Tuesday night. I'm up to 2X/day to try to kick this quicker as recommended by the Dr. I have been drinking 3 Ensure's a day and I'm actually eating a little bit now so I feel much better as far as my fatigue, shortness of breath, etc go.

My newest concern is that doctor recommended that if I do not significantly better by Friday that I should go on Prednisone which I do not want to take due to all of the side effects I have been reading about. Any one have any advice or insight into Prednisone

DeanC
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/5/2009 9:55 AM (GMT -6)   
New to the forum myself.  Prednisone has been my 'miracle' drug for the last 10 years.  I would get a flare up and mess around for weeks, sometimes months before I would start on Prednisone.  Once on it my flare up would be under control in a week.  I'm currently on the longest Pred course I've been on, 40mg a day since the first of the year.  Very bad flare up...one of my worst.  Flare is under control now and hope to start Pred taper next week.  The side effects for a relatively 'short course' have always been a fair trade off for me in getting my UC under control.  I kick myself a bit for being so hesitant in the past about getting on them sooner.  It can be a long taper...or seem that way, but it's nice to be back in control.

46 year old man
Diagnosed left side UC 1998
Asacol 4x3 
Rowasa nightly 


thisguy
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/5/2009 10:29 AM (GMT -6)   
Thank Dean. That's what I have been hearing about the healing power of this drug. What kind of side effects did you come across?

quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 2/5/2009 10:58 AM (GMT -6)   
Please don't do the prednisone until you give the topical meds a chance to do their thing....

Once on pred...always on pred for your flares....
Although I've never used it as of yet in my 20 years after diagnosis...I'm hardcore 5ASA oral/rectal...what I read seems to have it not work eventually.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/5/2009 2:02 PM (GMT -6)   
     Dean, has your GI doctor every suggested taking 6MP since I see you are taking prednisone for a long time.  I was on prednisone seven months last year because my doctor had taken me off the 6MP due to increased pancreatic enzyme levels.  Once the levels returned to normal he put me back on the 6MP with close scrutiny of my blood liver and pancreatic enzymes and CBC's.
 
     Thisguy....I developed osteoporosis from the prednisone.  My blood pressure also gets extremely high while taking it but it is the only drug which helps me achieve remission.
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.


thisguy
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/5/2009 2:28 PM (GMT -6)   
I have been on a Hydrocortisone steroid enema for a few days now and I'm feeling much better. Hopefully a few more treatments will take care of the beast and help me to avoid the prednisone. I want to thank all of your for your support and wish you all the best.

DeanC
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/5/2009 11:47 PM (GMT -6)   

Dean, has your GI doctor every suggested taking 6MP since I see you are taking prednisone for a long time. 

 

I've never been on 6MP, but will have that discussion with my GI doc after this last flare.  I've only been on Asacol/Rowasa for maintenance.  I was a serious Prednisone hold out, did not want to take it at all.  I was not able to stop a flare with just the Asacol/Rowasa.  I can't tolerate Hydrocortisone steroid enema, it's like adding gasoline to fire...but that's me.  I use to hold out for as long as I could before I would take Prednisone.  Now I give a flare about a week, two if it seems like a slow burn before I take Pred.  I've been able to taper in 2 1/2 months...this time it will be longer.  My side effects have been pretty minimal, a bit shorter fuse initially; more hunger, a little insomnia, skin break outs and just the general psychological worry of being on Prednisone.  It's great that the hydrocortisone enema is working for you Thisguy!


46 year old man
Diagnosed left side UC 1998
Asacol 4x3 
Rowasa nightly 


Cadillac Lover
Regular Member


Date Joined Feb 2009
Total Posts : 235
   Posted 2/6/2009 12:28 AM (GMT -6)   
I just started pred last thursday for the first time along with asacol still and my flare up is the same and actually seems a little worse at times. good amount of blood today. I'm calling the gi tomorrow to see what she thinks.
Diagnosed with UC summer of 08.
Currently taking asacol 1600mg 3 x a day & Prednisone for 50 days.
Currently having a flare.


Cadillac Lover
Regular Member


Date Joined Feb 2009
Total Posts : 235
   Posted 2/6/2009 12:28 AM (GMT -6)   
i'm 28 btw.
Diagnosed with UC summer of 08.
Currently taking asacol 1600mg 3 x a day & Prednisone for 50 days.
Currently having a flare.


livingwithuc1984
New Member


Date Joined Feb 2009
Total Posts : 2
   Posted 2/6/2009 12:47 AM (GMT -6)   
Im a 24 y\o female and Ive had ulcerative colitis since I was 8. I had just two flare ups until this year. October 23rd I started having diarrhea for one full week going about ten times a day then started bleeding. I was then hospitalized shortly after for one week. I was then put on 40mgs. of prednisone a day and started to get better having formed stools and slowly regaining my strength back. Last week I started having diarrhea again and after trying immodium and continuing on my prednisone I again started having staright bloody diarrhea about 15 times a day and started to become weak when standing up and also started having sever stomach pain. So,here I am again at the hospital on fluids and iv streoids!Very frustraiting,the prednisone has turned me into a pumpkin with a rash all over my face and lots of joint pain!When will it end?! Im very irritable and emotional Blah!! Im new to this site and would love any feed back on new medications or diet suggestions....

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/6/2009 11:41 AM (GMT -6)   
     Hi Livingwith UC.  Maybe you should consult with your doctor about starting Imuran or 6MP.  I believe that together with the prednisone it helped me into remission.  I was also on the Cort enemas and Canasa.  It does take the 6MP anywhere from 3 to 6 months to "kick in" before being able to completely get off the prednisone.  I also take a probiotic.  Not sure if it does anything but it sure isn't hurting me.
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.


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/7/2009 2:06 AM (GMT -6)   
Hi Livingwith UC. At times the BMs may not be related to UC and are a result of food allergy too in patients suffering from UC. I have been a patient myself since 1989 and have seen such flare ups. You should take steroids under strict medical supervision as it causes more damage than being a wonder drug. Your immunity level, reproductive system, kidneys, liver, sugar levels, everything goes for a six and after a point of time you become dependednt on this. And god forbid, if one has to go for surgery after being on strong and long use of steroids the recovery becomes more difficult and long. Try alternate medicines which have lesser side effects. I am 45 now and had surgery in 2005, which did'nt do well because of too much of steroids intake. Are you taking calcium with Alpha D along with Steriods. Have streroids with milk. It reduces the side effects to some extent.

Thisguy, i would like to inform you that hydrocotisone or any other steriod based enema is equally harmful as taking steroids orally. I have had this experience with Hydrocortisone as well as foam enemas.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 562
   Posted 2/7/2009 2:23 PM (GMT -6)   
Hi,

I have been at this for 29 years, and I to can say that prednisone has saved my bacon more times than I could count. I think your GI is thinking that oral pred. along with the cortifoam will work that much quicker at reducing the inflammation and keep it that way longer. Yes it has it's side effects, but what meds don't. It is imperative that you nip the disease in the butt ASAP before more damage is done. Have you ever been on remicade or humira?

Julia

thisguy
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/7/2009 5:15 PM (GMT -6)   
Hi Julia,

I have never been on remicade or humira. I had originally been diagnosed with UC and then a switched doctor's a few years ago cause I got new insurance and the new guy thinks I have Proctitis and not necessarily UC. I guess this is a good thing. I have not had a flare up this bad in quite a few years. Usually I would just take Asacol and it would go away on its own. I have been flaring for about 3 weeks now with weight loss, loss of appetite and I think I got a little anemic due to the lack of nutrients. I'm chugging Ensure drinks at around 3 a day and taking the Hydrocortisone steroid enema. I am feeling better but still not out of the woods. Doc gave me the Pred and I'm still hesitant to take it. I'm going to stick with the enema's (at 2X/day) until Monday and see if I can stick away from the Pred. I really, really don't want to take it but I do understand that I have to get better soon before something worse happens.

I appreciate the support from everyone and I will hopefully be able to kick it with the enema's for now.

Thanks,
This Guy

quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 2/7/2009 8:28 PM (GMT -6)   
I think you should also be on an oral med....preferrably a 5ASA such as Asacol.

There are also enemas that are made from 5ASA...Salofalk and Rowasa..depending on where you live.

You should decline the pred for a while...again..my opinion which seems to be biased. You haven't run the gamut of other topical meds before doing pred.

You should be eating actual food as well...

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/7/2009 9:25 PM (GMT -6)   

As quincy says "run the course of everything you can before prednisone.  That is what I have done.  Found I can't tolerate mesalamine medications of any kind - although they helped a little.  Used several enemas and the last one - hydrocortisone caused more bleeding each day and had to stop after 12.  Had a scope and mine had advanced 4 inches up my colon from last test. Tomorrow is second day of 40 mg. of prednisone and probably later try 6MP if I respond.

Have you had a colonoscopy recently to be sure what you are dealing with right now.  My doctor does not prescribe until he "looks".  Good luck!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


thisguy
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/8/2009 11:04 AM (GMT -6)   
Well, like I've said I have been in a flare for 3 full weeks now and I am waking up at all hours of the morning with having to go to the bathroom. I am in a lot of pain and I can't take it anymore. Don't really want to go on the Prednisone but at this point I think it will be the fastest way for me to get healthy. Hopefully I won't be on it for very long and I'll be back to normal soon.

I guess my thinking is I'm going into 4 weeks of constant bathroom trips, bleeding, cramping and all other joyous symptoms of this disease. How long can I be sick this way? I'll hit it now with this drug, hopefully get better and move on. I just can't take feeling this way anymore and I want to get back to normal.

Thanks gang.
New Topic Post Reply Printable Version
34 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Wednesday, September 19, 2018 11:25 PM (GMT -6)
There are a total of 3,004,968 posts in 329,182 threads.
View Active Threads


Who's Online
This forum has 161753 registered members. Please welcome our newest member, nguoivotinh1.
266 Guest(s), 9 Registered Member(s) are currently online.  Details
pasayten, Girlie, BillyBob@388, slapshot, searching1, InTheShop, Relentlesswill, three 5's and a jack, rpgdancer