Just diagnosed - help

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Ania
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 9/17/2008 3:57 PM (GMT -6)   
Ok I technically haven't been diagnosed officially, waiting for the path results but apparently my colon is ridiculously swollen so most likely ...

They say its most likely this or possibly chrones.

Anyway, Im 21, already have Psoriatic arthritis, Alkolosing spondalytis, and now possibly this. (Haha, my body doesnt have enough to do so it attacks itself... everything needs a hobby I guess tongue)

Anyway, what is it like living with ulcerative colitis? What do I have to look forward too (so far it seems like record breaking bathroom dashes and crippling stomach pain... tell me it gets better lol)

Does anyone have any holistic ways to deal with the pain? Heat therapy, diet tricks, anything? What are the meds like? Has anyone tries Remicade yet?

I just want to know what Im facing

Thanks in advance

Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 9/17/2008 4:03 PM (GMT -6)   
Ania, first of all, welcome to our forum. I am sure you do not like your body having so many hobbies. I love your attitude! UC is so different for so many people. As far as diets, what one can eat the other may not. I take asacol and canasa. The asacol makes me lose my apetite and I haven't had any side affects from the canasa other than I don't like putting things up my bum. I hope your diagnosis is better then what you think. Stay w/ whatever meds the doctor perscribes, get plenty of rest, and keep a diary of your food intake. That seems to help alot of people. For ex: I am not to have red meat. I ate 3/4ths of a hamburger on Sunday - which by the way was melt in my mouth good - but Monday I suffered.

Praying for the best for you!

Gigi1227
Diagnosised 8/25/08 GRRR
Currently Flaring GRRR
 
Canasa
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/17/2008 4:10 PM (GMT -6)   
Ania - be sure to ask about probiotics.  I take Align but there are many good ones - helps to firm up stool and make it more "normal".  ElaineNY

68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Rowasa every night for now- trying Lialda starting Friday
 
 
 
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 9/18/2008 6:51 AM (GMT -6)   
I know the feeling of having your body attacking itself as a hobby! :) You will find that all of us have varying histories and symptoms. So some may not be too affected by it and others find it very debilitating. I sincerely hope that it will get better for you though! Diet is very individualistic so you need to find what irritates you and what doesn't. Sometimes it helps to go on a low residue diet to help with the healing. It gives your colon a chance to rest.

Btw, welcome to Healingwell! :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/18/2008 8:30 AM (GMT -6)   
Hi, Ania. I'm sorry that you're body has made a hobby of attacking itself!
 
Probiotics might be a good place to start; there are many kinds, so you'll just have to pick one and try it out. I use a heating pad for the colon pains. Diet is different for everyone. I tend to avoid fried, spicy, and sour foods when I'm flaring. You could keep a food diary and see if any certain foods worsen your symptoms.
 
Is your colon so inflamed that you would automatically start on Remicade? Remicade is typically the last line drug. There have been plenty of people who have had success w/ Remicade. I received my 4th infusion yesterday, and even though it has helped, it hasn't sent me into a complete remission (I hope 4th one is the charm!). However, Remicade can actually heal your colon; so only 4 cm of my colon is giving me problems right now--the rest is healed!
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Ania
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 9/18/2008 2:40 PM (GMT -6)   
I don't know how bad it is yet, I do know that my colon was so swollen that the doc couldn't go any further with my colonoscopy for risk of perforating the bowel. I ask about remicaid because I'm on Enbrel for my arthritis but will have to change meds once they know what I have. Remicaid was one of the drugs mentioned that treat both...

A heating pad? really? that seems like a great idea? I wonder if warm baths work as well?

Liz3
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 9/18/2008 4:05 PM (GMT -6)   
I had a heating pad when I was in the hospital, and I actually just went out and got one today. I've been having this lower back pain, that I can only assume is related to this fun disease. But it does also help with the stomach cramps.

Ania
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 9/18/2008 4:11 PM (GMT -6)   
Haha, I have advice for the lower back pain... when you sleep try sleeping on your side with a pillow between your legs... it works wonders.

justcallm3jack
Regular Member


Date Joined Jan 2007
Total Posts : 149
   Posted 9/18/2008 10:19 PM (GMT -6)   
Ania, welcome to the board!

I am sorry that your body seems to be against you. I hope that you will find a sense of comfort as you talk to all of us here. I was in remission for a good while, and then all of the sudden when I least expected it, a flare errupts. Everyone has varying symptoms and different ways of dealing with the pain. I, for one, have never even thought about using a heating pad. ( I might just go out and buy one) For me, I feel nauseous, have numerous trips to the bathroom, bloody stool, massive pain that will not subside.

I wish you the best!
Nineteen year old female diagnosed Easter 2004.
 
Asacal.
Imuran.
Prevacid.
Remicade.
 
 I refuse prednisone.
 
Active Colitis all throughout the colon.


UChick
Regular Member


Date Joined Jun 2006
Total Posts : 176
   Posted 9/20/2008 6:29 PM (GMT -6)   
Hi,

I took Remicade, but only three times. It helped me a lot and I really think it jump started me into remission (along with my other meds of course).

A home remedy that I like is apple cider vinegar and honey. just mix 1 tablespoon of each together and take it with dinner if you want. make sure to drink some water after to wash out the vinegar from your gums. Something about the vinegar killing the bacteria in your body or whatever. Now, I don't take this as a treatment, but found out about it as a remedy for sore throat, which is when i saw it under UC as well.


UChick
Age 18
Diagnosed September '01 : Remission since July '02
Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Centrium A-Z multi-vitamin
Took Remicade 3 times, BIG FAN!!!!
Have Taken: Prednisone, Flagyl, Zantac (for acid reflex)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/20/2008 8:36 PM (GMT -6)   
Ania...welcome and hang in there...once you get on the right meds that work best for you things should start to get better very quickly...be patient as this could take some time working with your GI doc.
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 9/21/2008 8:01 AM (GMT -6)   
Oy...apple cider vinegar and honey?  Sounds yukkie to swallow

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/21/2008 12:27 PM (GMT -6)   
Welcome to HealingWell, Ania. I've been on Remicade for a while, and it has really helped me. With your additional history of psoriatic arthritis, though, your doc might want to try Humira before Remi. It's approved for PA and I think has been helping about as much as Remi in the UC trials that are going on currently. Your GI still may want to try more conservative treatments such as the 5-ASA's before going to the biologicals, though.

As far as the pain, the best way to control it is to get the flare under control. Also, I don't know what you've been taking for the arthritis pain, but it's generally recommended that those of us with UC avoid NSAIDS (aspirin, ibuprofen, naproxen, etc.) because they tend to cause GI bleeding. You should discuss this with your doctors, though, as some of us do continue to take them because the benefit outweighs the risk. (Like me, for instance.)

Lol at your body's hobby; my immune system has that same hobby. I've started thinking of it as I have autoimmune disease; the adventure is waiting to see which organ system it will attack next.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Ania
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 9/30/2008 6:40 AM (GMT -6)   
Thanks for the advice... I'll try the apple cider vinegar, though I wonder if it would have the same effect if I used it in a homemade dressing...

Judilyn- one of the reasons I asked about remicade was because I was on biologicals already for my arthritis, the NSAID's never worked for me. I didn't know Humira was a treatment for UC. If that's the case then I wouldn't be surprised if my Rhum, puts me on that one now for my PA, apparently the one I take now, ENBREL makes any type of IBS worse XD

Now all I need to do is find a GI willing to take my case, you would not believe the trouble Ive actually had with that.

Thanks for all your help everyone.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/30/2008 9:25 AM (GMT -6)   
Humira hasn't been approved for UC yet; but if it is approved for PA, then you shouldn't have a problem getting it.

I'm sorry you haven't found a GI yet. I hope you find one soon so you can get everything under control!
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 2 Anucort
 


DKTB
New Member


Date Joined Sep 2008
Total Posts : 10
   Posted 9/30/2008 10:30 AM (GMT -6)   
Hey Ania, I like your sense of humor even with all that is against you. I was diagnosed in March 2007 with UC just before I was suppose to do my College exams (never got to do them) and my doctor told me that my condition is severe and could possibly lead to colon cancer. Hearing that was shocking but I never asked God "why me?" I knew that if it was His will I would be healed and this disease actually brought me closer to Him. I was placed on Sulfasalazine and Predisone which only suppressed the bleeding but the side effects of them were ridiculous. So a friend did some research and found out about Coconut Oil (pure) and Flaxseed. I took them for a whille with the medication and eventually came off the medicatin completely since December of 2007. Haven't took either medication since. I felt better the same day I took the coconut oil (serious) and have been ok since. The flaxseed is very good too. If u use the flaxseed oil that will me good. I use the raw ones and blend them fine and sprinkle it on whatever I eat (2 tablespoons a day). So with these natural cures, God, my very supporting boyfriend, family and friends I've made it so far. The Bible says that God will never give us more than we can bear. People always tell me they are shocked at how positive I am eventhough my situation is bad. I can only make it with God. Trust me Ania sometimes we get so distracted with the things of this world that God needs to put things in our way so that we could come back to Him. I was distracted with my school work and didn't find enough time for Him. I regret that now! Anyway God Bless and hope everything works out for the best.
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