Getting discouraged

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Red_34
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Date Joined Apr 2004
Total Posts : 23549
   Posted 11/15/2007 11:26 AM (GMT -7)   
I'm having one of those days where I just want to hide in bed and not get up.  This latest flare is getting to me emotionally.  I have placed a call into my GI, the nurse called me back but she had to talk to my GI so hopefully I will hear something today sometime.  But I thought I would give the Canasa another try to see if they would help....guess not - now I have increased D, blood and pain.  But I got to thinking, something that I've been trying to avoid, what use is taking all these meds if they're not going to do anything for me???  I had all my hopes up on 6mp taking away all my symptoms.  And it has for the most part but why am I on such a heavy duty drug if I'm still going to get flares??  Granted it has kept me out of severe flares and it got me off steroid enemas but it seems to not be working like I thought it would.  I guess my expectations were too high.  Sort of disappointing to tell the truth.  I guess I'm getting frustrated.  sad
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 11/15/2007 11:37 AM (GMT -7)   
I'm sorry you're having such a rough time of it, Sherry. I understand your frustration.

Hang in there, darlin'!

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 11/15/2007 11:50 AM (GMT -7)   
Sherry, that is frustrating. I hope things turn around for you soon. 
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade remission


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 11/15/2007 12:01 PM (GMT -7)   
Have you given the diet to address intestinal bleeding a shot?
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Dansky
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Date Joined Mar 2005
Total Posts : 2844
   Posted 11/15/2007 12:11 PM (GMT -7)   
Sherry,

My thoughts prayers and ((((((((((((((((((((hugs))))))))))))))))))))))))) are there for you now and always.

Take care.

Dave
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
Azathioprine, Beloc-Zok, Calcichew, Citalopram Hydrobromide, Dihydrocodeine, Mydocalm, Paracetamol, Pariet, Prednisolone, Sulfasalazine, Zopiclone.
 http://www.healingwell.com/donate/

 

 


luv2dream
New Member


Date Joined Nov 2007
Total Posts : 2
   Posted 11/15/2007 12:31 PM (GMT -7)   
:-)  Please do not get discouraged....My granddaughter has CD and I have UC...both diagnosed in 2005. 
The best results were following the SCD (Specific Carbohydrate Diet).  Check out the book "Breaking the Vicious Cycle" by Elaine Gottschall.  We are both avid followers and it has worked.  If the bad bacteria has taken over, you must quiet the bad bacteria down.  I started taking Llialda about 5 weeks ago and with the SCD, the results have been amazing.  You have to read about what is happening in your intestines.  Elaine Gottschall outlines the ingredients/foods that are Legal and Illegal.  You can look it up on line....Everyone's body and chemical makeup is different but you cannot feed your body, White Flour, Wheat, Sugar.....check out on-line.  Wishing you success in getting better!
 
yeah  ~fran

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 11/15/2007 12:32 PM (GMT -7)   
Hey Sherry. Sorry you are having a rough time. How long have you been on the 6mp? Have they done a prometheus to make sure you are at the correct dose? Hang in there!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 11/15/2007 12:39 PM (GMT -7)   
Sherry....I would still check out the suggestions of diet....although the 5ASA meds are maybe a culprit in the while thing....maybe tapering off the Colazal and staying on the 6MP is still something you should try.

How bad are your symptoms at this time? Have they gotten worse over the past week or so? Is it period time as well?

Totally sucks for all you've been having to go through. I hope your doc will have some suggestions for you.

I think tapering the colazal is worth a try.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 11/15/2007 12:44 PM (GMT -7)   
I'm sorry to hear this red....it's almost an automatic when we get our hopes we set ourselves up for disapointment, that's why I never have high expectations with anything...I find that I'm usually pleasantly surprised instead when I do this so I stick with it in all aspects of life not just IBD....

Give it time for things to kick in, it's not often drugs work quickly enough especially the tougher the flare, so don't concentrate on it too much (I know, easier said than done) but things are bound to get better....patience.

Feel better soon!


:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/15/2007 1:14 PM (GMT -7)   
Thank you everyone for the kind words. They are much needed today. I just recently had the Prometheus test done and the nurse called to let me know that everything was stable - not sure what that meant. She left a message on my voice mail so I didn't talk to her personally. But the Prometheus test before that said I was on the low end of metabolizing 6mp right so the doc increased my dosage from 50mgs to 75mgs on Monday and Thursdays with 50mgs still on the other days. It helped a bit and I was feeling pretty good for a while but my recent surgery threw everything for a loop. I've been on 6mp little over a year.

I have read the SCD book and truthfully, I doubt I can stick to such a strict diet. And also, I was afraid of the initial period of adjustment because I heard you can lose weight in the first few weeks. I can't afford to lose anymore weight. It seems I have to eat a ton just to maintain the weight that I am currently holding.

Quincy, no I'm not near my time - if I ever have one again that is. Technically I was supposed to have one 2 weeks ago but I didn't get it and my GYN said I may never have anymore because of the ablation. Right now, my symptoms are 4-5 morning bathroom trips with D, blood on the stool and sometimes in the bowl, those oh so familiar white knucklers, constant cramping and that pinchy left sided pain. I was only going once with blood when I stopped the Canasa then thought I would give it another try and now I where I'm at right now. So this is definately the clincher for me that I can't do Canasa anymore!

I'm still waiting for the nurse to call me back. My GI isn't in today so she had to page him or consult another doc. Hopefully she will call back today.

Princesa, the diet you emailed me doesn't seem to be as strict as the SCD so I might go ahead and give that a shot.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 11/15/2007 1:14 PM (GMT -7)   
Hi. How long have you been on the 6MP? For me, it took 8 months until I felt better! And I nearly called it quits after six months, figuring it was never going to work. Maybe it just takes longer for some people. I was definitely where you are now, wondering why I was taking such a serious drug if I continued to feel like hell.

I wonder what else you might take to ease your symptoms while you give the 6MP some more time. Canasa doesn't seem to work for everyone. What about Rowasa? Another thing that helped me during my worst flares was Lomotil. It slows down gut activity.

Were the steroid enemas helping? Maybe it's worth putting that back into the mix for a little while to stop the bleeding. Using them just twice a week might make a difference.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1611
   Posted 11/15/2007 2:10 PM (GMT -7)   
Hang in there Sherry. My thoughts will be with you

Janice
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium 
Currently in Remission


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/15/2007 2:13 PM (GMT -7)   
Julee, yes the steroid enemas helped. Unfortunately at the time, I couldn't get off them and I was on them for almost a year before I started 6mp. I have a feeling when I get a call back from my GI that he is going to suggest them so I might go ahead and use them for a little bit to get this flare under control (I still have some left over). I just so didn't want to go back on them if I could help it. I can't tolerate Rowasa - it causes me intestinal pain, increased bleeding and D.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 11/15/2007 4:44 PM (GMT -7)   
Did you ask the gastro about possible allergy to preservatives in Rowasa & Canasa? Are you taking 9 Colazal daily? Maybe tapering to 6 daily would help. I believe that end of NIH Phase 2 clinical trials set recommended daily dose at 6. Best wishes for you to turn the corner back to good control of UC! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 11/15/2007 4:53 PM (GMT -7)   
Sorry to hear that Sherry. I had just read a post where you said the 6mp was helping too.
How long have you been off the steroids? It might just be a flare associated with that. I think mine hits about a month out.
I did the scd and vit e for a year and a half and it's really not bad when you have the good cook books. I was depressed about what I'd miss too and spent a lot of time crying till I found them. However, one day I just said "this is crap" (litterally) and I wasn't taking any more of this stuff that wasn't doing any good (exactly what you feel now). I also said I wasn't going to end up on 60 pills a day and still be flaring like I saw some people here doing. It hurt my heart just to think of them (why I stayed away for a long time). It's amazing how well I stuck to it b/c before and now after (since I'm on the "big" drugs) I have no self control. I didn't lose ANY weight on it. But then, I ate anything and everything I could that was allowed on the diet. It was amazing though, I was eating brocolli and fruit, and veggies, and all the fiber I wanted to. Now I can't eat one little bite of anything. :( I'm considering giving it another go while on the "big" drugs to see if it can get me over the hump.
Anyway, point is, when you get tires enough, you can TRY anything. I wish you luck and sorry to hear it's bad again.
dx 4/05 with pancolitis UC after birth of my second child...
18 months of vit e enema and scd remission
Flare since 7/07...almost to surgery, now almost well through mostly natural stuff
Trying to make up the difference with...
Lialda 4/day... I don't know, 3 months maybe?
Remicade 10/26, 11/09, next 12/3
Imuran 50mg at night 11/11
 
Been there, tried that....
 


auntmoo
Regular Member


Date Joined Dec 2006
Total Posts : 43
   Posted 11/15/2007 5:01 PM (GMT -7)   
hi, dumb question but what are those white knucklers? Just curious if I have had them and never knew what people were calling them?

luv2dream
New Member


Date Joined Nov 2007
Total Posts : 2
   Posted 11/15/2007 6:33 PM (GMT -7)   
Sherry...I had lost over 40 lbs....but once I followed the SCD routine...no sugar, no flour (except almond flour), no carbs....and watch "ingredients"...no corn syrup, fructose, glucose etc, I wasn't feeding the bad bacteria....
Sounds like you have been through a lot....but watching my granddaughter and myself get our lives back has been wonderful.  I will never go back to eating all the bad stuff because I had "D" all the time and no antibiotic, anti-inflamatory would help.  I had to help myself....
I had to make a "life change" to get better.....
 
Wishing you to get better.....
 
 

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/15/2007 7:08 PM (GMT -7)   
Auntmoo, those white knucklers are where you are going to the bathroom and you feel like you have razor blades coming out of your tush! Not fun at all!

Denise, I've been off the steroids for about 8 months so I know that it's not from that. In fact, I know exactly why I'm flaring and how it started. I had an endometrial ablation done about a month ago and had an adverse reaction to the narcotic pain meds which sent me to the ER. Since then I've been trying to get control of this flare. Before then, I was having no UC symptoms.

Old Hat, I haven't had a chance to talk to my GI yet. I'm still waiting for a phone call from the nurse to get back to me. Technically I don't have another appt with my GI yet until January but if it warrants it, I will try to get in sooner. When I do see him, I'm going to ask him that. And yes, I'm taking 9 Colazal a day. I think I might try to taper down to 6. Before I tried that and my body said no way! You're staying on 9!
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 11/15/2007 7:19 PM (GMT -7)   
Sherry - I'm so sorry to hear that you're feeling so lousy! Maybe a few steroid enemas to give your colon a "boost" will help? You were doing SO well. This has to be a miserable shock!

Just wanted to let you know I'm thinking about you :)

Hang in there!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 11/15/2007 8:33 PM (GMT -7)   
i feel ya red. ive been in this flare for over a year and every single time i get rid of my colitis symptoms i go see my doctor and a day later they all come back. this has happened constantly.

i will have a week or 2 of being able to go out, just going to the loo a couple times a day. no blood or diarrhea...

then BAM! it comes back. the lot of it. i have white knucklers everytime i go now. with or without blood, formed or not, i feel like im having a baby. i sound like it too.

according to quincy, thats my rectal inflammation which im now using colifoam for. but man, why can't it just go away? why does it have to tease me for a week or 3 and then come back. its making me very sad and i just can't take it anymore.
a year of pain and suffering is just way too long.
and now the stupid prednisolone im on (50mg a day) is driving me mad and i cant sleep and im moody and OMG, its just all too much ~!
31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only.
**3 weeks out of hospital/no colitis symptoms... normal bm's only 1x a day + no blood
50mg prednisone 1x  with lunch or breakfast
50mg imuran 1x  8pm stopped it to try and have a baby
2x 500mg mesalazine 2x day + night
VSL#3 didnt work
Aloe Elite didnt work
Budesonide 9mg day didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 


Wiped Out
Regular Member


Date Joined Jun 2007
Total Posts : 71
   Posted 11/15/2007 9:16 PM (GMT -7)   
I'm sorry you are having a rough time.  I think my frustration level is approaching yours.  I'm not bleeding now but still have a lot of urgency and D in the mornings along with such soreness and fatigue.  A bothersome headache has been with me for the last few days.  I'm coming off a low carb diet that accomplished nothing but a weight loss.  Generally speaking, I feel awful.  I thought about tapering the Colazal but so fearful of having another flare (or worsening this one) like before.
Appt. with GI coming up in about a week but I doubt there will be any change of medicine no matter what I tell him.  I always take a deep breath and know that there are so many people out there so much worse than me.  Good luck.
 
Left-sided UC Diagnosed 2004
Iron Deficiency Anemia Diagnosed 2007
Indeterminate Dysplasia Biopsy Result 2006   
Colazal  -  3X3 daily 
Entocort - 3 daily
Nexium
Folic Acid 
Ferrous Sulfate - 325 mg X3 daily
Vitamin C - 500 mg 
Canasa - As Needed
 
 
 
 


cns25
Regular Member


Date Joined Mar 2006
Total Posts : 79
   Posted 11/15/2007 9:26 PM (GMT -7)   
Sherry,
I wanted to add that I understand how you feel. I got on the Remicade with sort of the same expectations...it can really depress you if you let it. When I feel like i am going into flare mode I curse my insides and all the medicines I am on....but it never seems to get as bad as it was during my year long bout. Also, knock on wood, I have been able to get them under control while on these strong meds. I have lots of good days now, where as for a long time I didn't have any. Anyway, I hope you get back to having good days as well. I also hope that the 6mp keeps this flare from getting out of hand. Can you handle vicodin? I swear I think it helps me get out of a flare, but that could just be wishful thinking. I'll be thinking about you!
candice
 
25 yrs, new mom to 16 mos baby boy
colazal
off the pred
remicade infusions
imuran 100mg
probiotic
welbutrin and weekly therapy:)
UC since 99


redplum
Regular Member


Date Joined Sep 2007
Total Posts : 49
   Posted 11/15/2007 11:22 PM (GMT -7)   
Hi Red,

Sorry you are going through such a difficult time. It is very disappointing when you take such strong drugs like 6mp and you still get sick. I hope you feel better soon. Maybe trying some rectals meds again may be a good idea.. so you can at least function a bit better and get back a little wellness. Have you tried Budesonide enemas before? They are good if hydrocortizone enemas cause side effects--such as swelling, etc. My thoughts are with you.
 
Warm regards,
 
Red Plum

Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 11/16/2007 12:08 AM (GMT -7)   
Sherry,

I'm wth Julee70, it took me 8 months to see the benefits albeit Azathioprine.

(((((((((((((((((((((((Take care hugs)))))))))))))))))

Dave
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
Azathioprine, Beloc-Zok, Calcichew, Citalopram Hydrobromide, Dihydrocodeine, Mydocalm, Paracetamol, Pariet, Prednisolone, Sulfasalazine, Zopiclone.
 http://www.healingwell.com/donate/

 

 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/16/2007 5:01 AM (GMT -7)   
For the most part, I try not to dwell on this disease that much. I'm usually in a good frame of mind when it comes to dealing. But for some reason it just all came down on me at once. I was thinking, last night, about how some of you just stop all medications and try to go the natural route with supplements and/or diet. And I realized that if I was to try that, I would be petrified to even start! I give you kudos for having the strength to drop all medicines and try to go natural. I've been on medications for 15 years and I STILL remember what it was like before being diagnosed. Not being on meds and suffering with this crappy disease. And there is NO way I want to get there again. Yes, I'm getting frustrated with all these medications. Yes, I wish I could just stop taking them all. However, I KNOW that they're at least helping keep the most horrible flares at bay. I just wish that things could get NORMAL for a change and that these meds can get me there. Nothing seems to go the way I would like it to and I am getting tired of getting beaten down.

This is not by far my most horrible flare and actually it's sort of mild compared to my past ones, but it just stinks when you go to feeling great and then to this. I WANT SOMEONE TO FIND A STINKIN' CURE! :)
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 

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