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Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/23/2009 2:58 AM (GMT -6)   
I have had uncontrolled colitis for 15 years now, and i have recently been taking Asacol foam enemas to try and gain some control, they were ok for the first 2 days, but now i can't seem to hold them in at all. I have previously tried Steroids but they didn't agree with me, and then i tried pentasa but they made me vomit.

I am now feeling at the end of my tether, I am going to try the Specific carbohydrate diet, but am a little worried about losing anymore weight as i only now weigh in at just under 7 stone. Anybody who has been on this diet i would love to hear your experiences. (My diet is currently rich in bread potatoes, meat, and refined sugars, i can not currently eat ANY fruit or veg or dairy)

What more can i do, i am really not tolerating the meds i have been given over the years, apart from trying to change my diet, i am seriously thinking of having my bowel removed but my husband is dead against it.

I am currently experiencing diarrhea, left sided pain, weakness/tiredness and just throughly depressed.

Any advice?
Ulcerative colitis for around 15 years (Im am 28 years old now)

15 years of untreated colitis

I am taking Asacol foam enemas 2 x a day

Calcium 3 x a day for osteoporosis

Actimint pre and probiotics 6 x a day

My biggest concern BOWEL CANCER :O(


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/23/2009 6:58 AM (GMT -6)   
Do you know the extent of your UC? If it extends beyond the left side, enemas alone are unlikely to control it. If you're unable to tolerate Pentasa and other 5-ASA's (Asacol or Colazal), have you tried Sulfasalazine? It's an older drug, but quite effective for some.

Other treatments you might consider are the immunosuppressants, 6-MP or Azathioprine. They bring a lot of people under control also. It sounds as if you're in the UK, so I believe Remicade may not be available to you, but it has been a miracle drug for many of us.

Are you being followed by a GI consultant? You should be, and you should be having a colonoscopy periodically to monitor your condition and check for pre-cancerous lesions.

Have you seen a surgeon? Most people who have their colons removed now have an artificial rectum constructed from their small bowel so they don't have to wear a bag, but can eliminate on the toilet as usual.

Do you know why your husband is so set against surgery? Does he know how this disease affects your life?

I'm glad you found this forum, and I'm sure others will post to talk about their dietary experiences. I've found that changing my diet has no effect on my UC, so can't help with that.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/23/2009 9:16 AM (GMT -6)   
i was going to ask also why your husband is so against surgery?

It really does make life so much better.

Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/23/2009 9:46 AM (GMT -6)   
I have moderate to severe colitis, left sided. My husband just thinks I'm 28 years old too young to have my colon out, and I think he feels that with that on my tummy that it's not nice to look at. I do get how he feels but I am feeling so ill everyday. If there is no medication or diet to help me what else can I do?
Ulcerative colitis for around 15 years (Im am 28 years old now)

15 years of untreated colitis

I am taking Asacol foam enemas 2 x a day

Calcium 3 x a day for osteoporosis

Actimint pre and probiotics 6 x a day

My biggest concern BOWEL CANCER :O(


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/23/2009 9:59 AM (GMT -6)   
I can understand how your husband might need to get used to the idea for a little while--but hopefully he will come around and say, "I love you no matter even if you have a bag!"
Also, you might be jumping to surgery a bit quickly, since you aren't really on any meds right now. (just the Asacol enemas which aren't being retained).
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/23/2009 10:02 AM (GMT -6)   
Mercury28 said...
and I think he feels that with that on my tummy that it's not nice to look at.
Why should how your tummy looks be more important than how you're feeling??
 
And also yer as amywaffle said - maybe don't jump to surgery if you're hardly on any meds, and especially not the stronger ones such as 6mp/Azathioprine.
23 year old female from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days; Hospitalised Feb '09 for 7 days.
  
Currently taking daily: 
(Just finished course of Prednisolone), 100mg Azathioprine, Asacol suppository 500mg, 1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins.
                             
                             


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/23/2009 10:25 AM (GMT -6)   
I think that you should *really* try the meds again. Are you sure it's not your anxiety over taking them that causes the vomiting and your inability to retain the enemas? I'm not trying to be mean or snotty, but anxiety can do that to a person. Perhaps it would be a good idea to see a therapist who specializes in counseling people with chronic diseases. There are a lot of meds that you can try before resorting to surgery.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/23/2009 4:12 PM (GMT -6)   
its not gross having the bag on your tummy, i thought it was goign to be but its really not.
Of course you can always opt for jpouch surgery too, so you would only have the bag for a few months.
28 is young, and all that means is you have along time left to live and you can either do it sick or healthy! and if surgery is all that makes you healthy then thats the best thing
I was only 29 when i had surgery.

Good luck!

Maybe have your husband look at some pictures of people with them, or come on here and read the posts where we talk about them, that might help him come to terms with it some.

Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/24/2009 2:07 AM (GMT -6)   
I saw my gastro doc yesterday and he wants to do a sigmoidoscopy straight away so he can see what is going on. He said that surgery could be an option but it's a huge decision and maybe I should try other meds first. He is talking about infliximab and 6mp. He said I could try asacol or mezavent tablets but I can't swallow the darn things.

Asked him about the scd but he said it would make no difference. He had never actually heard of the diet And of course all he is focused on is medication to treat this. Does anyone here think diets work with colitis? My diet is poor as I currently can't eat fruit and veg.
Ulcerative colitis for around 15 years (Im am 28 years old now)

15 years of untreated colitis

I am taking Asacol foam enemas 2 x a day

Calcium 3 x a day for osteoporosis

Actimint pre and probiotics 6 x a day

My biggest concern BOWEL CANCER :O(


ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 7/24/2009 10:06 AM (GMT -6)   
Sometimes I think the medical community is the least informed of all when it comes to IBD - and I come from a medical family. Although not everyone will see results from a diet change, many do. I personally have not tried the SCD, but others on this list claim that it has helped them a great deal. I have no reason to doubt their claims. My dietary changes have been minor in comparison, but it seems evident that diet can either help or exacerbate colitis.
Diagnosed with UC in 1990.
Current Meds: Sulfasalazine & Folic Acid.
Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.
Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/25/2009 3:41 AM (GMT -6)   
I have been getting so down after seeing my gastro doctor, he is always so negative and always leaves me feeling like i am going to drop down dead at any moment. My previous gastro doctor was extremely good, and she always managed to remain positive when i didn't always listen to her advice.

At the end of the day i have had colitis for a long time, and i have to deal with it, as it seems to be taking over my life. I do not want to have remicade or 6mp and i also don't want surgery just yet. I kind of got up this morning thinking i am not going to let this disease get the better of me!

So my plan is now to restart the Asacol foam enemas and to play with my diet, maybe the scd, or an anti inflammatory diet, low residue or gluten free and just see what works for me. I have also just been recently diagnosed with osteoporosis so i need to be thinking about turning that around and making sure i take my calcium everyday, and making sure i do my exercises to strengthen my bones.

It is so easy to become depressed and try and ignore the fact that you are ill, but at the end of the day it is always there one way or another. I just always have this underlying worry that i have bowel cancer, and it scares me, thats why i was thinking about just having surgery so i would not have this problem anymore.

I am moving to Canada (Vancouver) in September from Devon in the UK so obviously have to think about medical insurance and what medication i can afford to have, so if i can control this with alternate medicines then all the better. I just want my gastro doctor to listen to me and maybe encourage a change of diet, rather than just dishing out stronger and stonger medication when he knows that i am against that kind of treatment.

I am looking in to different probiotics, maybe that could help.
Ulcerative colitis for around 15 years (Im am 28 years old now)

15 years of untreated colitis

I am taking Asacol foam enemas 2 x a day

Calcium 3 x a day for osteoporosis

Actimint pre and probiotics 6 x a day

My biggest concern BOWEL CANCER :O(


ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 7/25/2009 6:08 AM (GMT -6)   
You may want to consider "Listen to Your Gut" by Jini Patel Thompson. Information can be found at www.listen2yourgut.com/. This is a resource that has helped me a great deal. She is also a Canadian from British Columbia. You will practically be neighbors.
Diagnosed with UC in 1990.
Current Meds: Sulfasalazine & Folic Acid.
Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.
Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30703
   Posted 7/25/2009 3:30 PM (GMT -6)   
Hi mercury...how long have you been using the foam enemas nightly/daily?

You should also be on an oral 5ASA med such as asacol at the very least.

Once you come to Canada...there are NO asacol foam enemas...sadly...but there are retention enemas called Salofalk or Pentasa.

I suggest some of the problem you're having at this time is that you'll be moving to a new country with a new set of stressors soon to come.

Ask for an oral 5ASA med such as Asacol...at least 6 to start. If the doc puts you on a high dosage to start, you might have some side effects that will be difficult to distinguish if it's UC or med-related. You can always increase if you need.

As well, keep on the Asacol Foam twice daily.

Add a probiotic and fibre supplements.

hang tough....it takes a while.

If you are to change to the sCD...it will help in the way how you feel. I know some on the diet, and it definitely changes the discomfort levels, although hasn't changed the bleeding factors.

Try not to get too discouraged....I think part of the reason things have gone on for so long is because you haven't been on enough/the right meds.

It does, however, take commitment.

quincy
*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


jewelknit
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 7/25/2009 4:12 PM (GMT -6)   
Am on colazol, Rowasa enemas and 6MP (just started that 10 days ago).  Nothing is working so I put myself on a diet of my own; no dairy, no gluten no fruit or vegetables except for bananas and steamed carrots, no caffeine or alcohol and no fried fruits.  I combined the concepts of a few different diets.  I'll let you know if I see any improvement.  I sure hope so - am in the bathroom 8-17 times a day with diarrhea, bleeding, mucous...
I t sounds like you need a GI who is more understanding.  I agree that most GI's don't know much about diet and don't even advise us about it.  Because of that I finally decided to break down and go to a homeopatic nutritionist this week.  Can't imagine what she's going to tell me!

Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/26/2009 3:20 AM (GMT -6)   
ickypoo said...
You may want to consider "Listen to Your Gut" by Jini Patel Thompson. Information can be found at www.listen2yourgut.com/. This is a resource that has helped me a great deal. She is also a Canadian from British Columbia. You will practically be neighbors.


Thanks for that link. The book looks good, and certainly something i want to read more about. It sounds like it is not as restrictive as the SCD, which would be good in the long term.
Ulcerative colitis for around 15 years (Im am 28 years old now)

15 years of untreated colitis

I am taking Asacol foam enemas 2 x a day

Calcium 3 x a day for osteoporosis

Actimint pre and probiotics 6 x a day

My biggest concern BOWEL CANCER :O(

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