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spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 12/17/2008 4:16 PM (GMT -6)   
cry  

Hi everyone, just need some advises how to keep normal life. Once upon the time, Id been normal, active and happy person.… then, I was diagnosed with UC. I know it's stupid for me to say that (cos my flare is mild, without pain, just blood and mucus, and 1 time bathroom time), but I it appears that I can't get over "why me?" part. It often seems that the life is over even though I have a very helpful and loving husband and a baby boy. It's is hard for me stop thinking about my condition, and fell myself happy. I just can't deal with it anymore...


Left side UC, diagnosed 2008
Colazal 10 tabs/day
VSL#3 4


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 12/17/2008 4:22 PM (GMT -6)   
Hi....we all go through that stage, but if you've recently given birth and are dealing with a baby plus flares, you need to talk to someone who will make sure you are doing OK physically and mentally.

Do you have enough supports, friends, family? Are you able to delegate chores, etc? Does your husband take his responsibility with baby, house, you..etc?

I would suggest, however, htat you call the doc and ask for rectal meds. I would suggest a retention enema...the 5-ASA type, Rowasa or if you're not in the US..Salofalk. That will help rectal inflammation and help ease your symptoms.

You're on a high dosage of Colazal...did you start on that dosage?

Are you taking 4 sachets of VSL#3? that might be adding to your discomfort.

Are you eating enough protein, etc during the day?

You'll soon get over the pity feeling..if you aren't able to at this time, you should consider maybe low dosage antidepressant for a short period until you start to feel better.

Hang tough...there are a lot of new moms on this forum who can hopefully give you  suggestions, empathy, etc.

quincy


*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 12/17/2008 4:36 PM (GMT -6)   
Heather, thank you for your reply. My baby is 16 month old and I have no problems with him, and my Husband helps me a lot, and even my UC doesn't bother me so much...It seems all in my mind...I can'r accept it that it's forever...
Concerning meds…I started with 8 Colazale (generic per day) and there were a little or no effect at all, so my doctor increased the dosage. I also tried Rowasa, but I fill discomfort after it.
And I'm still confused about food…I don't feel that anything make me better or worth, so I'm trying to eat healthy…My problem is, I have terrible constipations when in flare, so I can't eat white bread and pasta, I need something to help it go. I'm trying to eat wheat bread (without seeds), fruits and vegs (all kinds, not sure if I supposed to), soups, and chicken, fish or little red meet…I also try eliminate sugars and Equals from my drinks (not success yet). What do I eat wrong? I guess a lot ..
Left side UC, diagnosed 2008
Colazal 10 tabs/day
VSL#3 4


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 12/17/2008 6:05 PM (GMT -6)   
I feel for you and I think you hit the problem of why some of us are here. Its why I'm here. My flare is on the downward swing ( I hope ). And I have trouble dealing with the FEAR. I can be having a great day bathroom wise, but let me get in a situation where there isn't one handy and panic. Then I do need one. As soon as I'm back home I feel great again. Its very depressing to think that this is how we may have to live for the rest of our lifes. But the good times you have more than make up for the bad days. Also seems like you have a very caring family which helps.
As for the food..... I have a gluten intolerance. No wheat. I live on fresh meat and veggies. Occassionally treating myslf to gluten free pasta or pancakes. I have even switched from my favorite budlight to heinken ( which is really low gluten ) or sorgum beer. There are ways to deal with this we just have to find them. I am still looking for them also.

Ever_Hopeful
New Member


Date Joined Dec 2008
Total Posts : 11
   Posted 12/17/2008 7:33 PM (GMT -6)   
All I want to say is hang in there!!! You've just been diagnosed so there are many options out there for you and you can have a wonderful normal life. For some people supplements works wonders, others have mentioned diet. You don't have to be a prisoner to this disease. If you want any more info or support just message me. I'm young and I have a pretty awful experience and I'm still here and looking forward :-)

As for food, its different for all of us. I have to have saltines and blue gatorade. Everything else is second. Generally my flare diet is rice, boiled eggs, fish, chicken, oatmeal, soups. I really can't tolerate any other drinks besides water or tea. If you cant keep vitamins down try at least to drink something like Boost so you give your body a chance at some nutrients. Like I said experiment its different for everyone. If you start to feel worse after a change in diet or supplement, take notice so you don't hurt yourself.

and take your meds on time and DO NOT SKIP. I felt good after my first flare started to go into remission so i started to slack on the asacol and I blame that on the flare that followed.
If you start to take steroids be smart. They may be what gets you into remission but for your health mentally and physically I would never recommend a high dose for longer than it takes for my bowels to get normal. I can no longer take steroids but they do help alot of people. Do lots of research, ask lots of questions, and just know, you're not alone.

Lots of love and no stress
:-)

Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 12/17/2008 7:57 PM (GMT -6)   
Yes, do hang in there - this is not a nice disease to have. However, let's look on the bright side - it's not a death sentence! Woohoo! You don't have cancer or something else that is terminal. You have a loving husband that helps you and you have a beautiful child! What more could you want! In the morning, wake up and look at that half full cup because your life is awsome!

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
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 12/17/2008 9:46 PM (GMT -6)   
I honestly think people who know me would say I am the happiest person they know. They say this without having any idea that I have this disease, and how I suffer. I don't know how I manage to be so happy...Maybe my disease has caused me to give myself permission to pamper myself in every way possible, because that's what I do. I hope you do, too. It helps!!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 


Ever_Hopeful
New Member


Date Joined Dec 2008
Total Posts : 11
   Posted 12/18/2008 10:39 AM (GMT -6)   
I totally know what you mean peety about the pamper thing. It really helps to take extra care your body parts that actually work smilewinkgrin

Get some yummy massage oils and treat yourself!

spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 12/18/2008 11:19 AM (GMT -6)   
Thank you everybody for your warm comments! I'm doing my best to be the happiest person, but sometimes...nevermind! smilewinkgrin  Thank you!! yeah
P.S. How can I find a good dietition in NY area?


Left side UC, diagnosed 2008
Colazal 10 tabs/day
VSL#3 4


robray
Regular Member


Date Joined Mar 2005
Total Posts : 130
   Posted 12/18/2008 3:04 PM (GMT -6)   
I was feeling very depressed and anxious for the past 6 months. Prior to that I definitely went through bouts of depression. I have asked for help and tried to get counseling, but I never got anywhere with it. Seems to be quite difficult to find someone who specializes in dealing with chronic illness. I finally found something that seems to help me...

This part may seem a little far fetched, but recently I started the spinach and sunflower seed (SSS) diet. I mainly eat a can of spinach per day and sometimes I eat sunflower seeds. It hasn't improved my UC that much, but my mood is greatly improved. I can't really explain it, but it could have been iron deficiency or maybe magnesium as the person who told us about the SSS diet believes. I actually feel happy more often than not now. I told my wife the other day that I keep thinking it is going to end. I don't even mind going to work and normally I contemplate all sorts of other alternatives (none of them good) rather than go to work.

I was already heading for remission when I started the diet. I was no longer bleeding or having very many cramps. Improvement at this point would be seeing my bowel movements become more formed. I haven't seen that yet, but it is possible the SSS diet is healing my colon in other ways that are less noticeable. In any event there is no way I am going to stop eating it. You might want to give it a try.

I eat a whole can usually every morning. I drain the water and eat it right out of the can. It grows on you after a while and now I don't mind it at all. My 2 year old daughter thinks it is some kind of treat, probably because I am eating it out of the can, and she even eats it. I have been eating it for a month now and it took a couple of weeks before I really noticed my mood was improved so stick with it for a while if you try it.

Good luck and merry holidays!
UC (Pancolitis) diagnosed in 1992. Medications: Dipentum, Pariet


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 12/18/2008 3:10 PM (GMT -6)   
That is too funny that your daughter wants the canned spinach too! You'll have to tease her about that when she is grown. Hmm, I think I'll go have some now...

Good luck finding a dietician, around here they all work at the hospital. I have seen a few over the years, here and elsewhere, and they didn't know how to do a low-fiber diet, didn't have a clue. All they know is fiber, fiber, fiber!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 


LULUBUBALA
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/28/2008 7:59 AM (GMT -6)   
ITS NORMAL..ALSO CONSIDER SOME MEDICATIONS CAN MAKE THESE FEELINGS EVEN STRONGER...LOL... FOR EXAMPLE PREDNISONE MAKES ME CRY FOR DAYS SCREAMING"WHY ME"...LOL...JUST LIKE YOU...LOL...BUT YOU WILL LEARN TO ACCEPT YOURSELF.. .ESPECIALLY ONCE YOU ARE IN REMISSION... YOU WILL REALIZE YOUR FLARES WILL PASS AND YOU WILL GO BACK TO NORMAL LIFE... :)

BEST OF LUCK

29 YEARS OLD
UC SINCE 19
6 PILLS OF ASACOL DAILY (SORRY DONT KNOW MGS)
FOLIC ACID
FISH OIL DAILY
FLARE UP ONCE A YEAR DURING AUGUST, LASTS about TWO MONTHS WHICH I NEED TO TAKE PREDNISONE, HAIR FALLS OUT AROUND WINTER LOL ( PRESENTLY IN THAT STAGE).
HAVE A WONDERFUL BOYFRIEND FOR THREE YEARS WHO IS VERY SUPPORTIVE
PLANNING ON GETTING PREGNANT :)
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