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Ulcerative Colitis
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Posted 1/27/2013 5:29 PM (GMT 0)
 

Hi Everyone,

I am really sorry about this but I have failed. I stayed on my diet and I kept using natural remedies but, I have had a cold this week and it triggered a flare up. I have had bleeding. I was almost there but it goes to show you that we can't always beat this completely. I hate this as I was so close. I got rid of so many symptoms and my UC has not spread, but my rectum hates me and that is the way it will be. Am I crazy for wanting surgery so I don't have to go through all the meds, and I can eat something more than my strict low carb diet. I’m not in any pain but it took all my meds to get this bleeding under control. I don't want to go through the higher meds and I know I am resistant.  If I change my diet I know it will spread without a doubt, and I know the meds will stop working. What would you guys do?

 

Sorry that I am a failure shakehead

 

Posted 1/27/2013 6:46 PM (GMT 0)
You haven't failed. Don't be so hard on yourself. This is a such a tough disease because it effects everyone so differently.

No, you are no crazy for wanting to have surgery. I resisted it for such a long time and as someone else wrote recently on another thread, the worst thing I did was try to save my horribly diseased colon for so long. I have pumped my body so full of crappy drugs and I wish now that I didn't do that. I should have had the surgery long ago.

I have been UC free now for almost 3 years. I cannot believe that the 3 year mark is coming up. It has been amazing to be healthy again like I was before UC.

You have to do what is best for you. I can tell you that you have to be ready to make a decision like surgery. I just knew one morning after being on the toilet pooping blood all night that I couldn't go on another day. Wishing you the best.
Posted 1/27/2013 6:53 PM (GMT 0)
You didn't fail. It's normal for a cold to trigger a flare -my daughter was doing well on diet for a couple of months and then flared this week due to the flu. There are some very nasty bugs going around. I don't think blaming yourself for this stupid disease is productive even when it comes to self healing. There are many alternatives out there - have you tried LDN or fecal transplant with your diet? these might or might not work. As for surgery - when my daughter was first diagnosed in hospital (she had pancolitis) I told the Dr I wanted surgery. A few days before that I hadn't even known what a stoma, colitis or even a colon was (I'm not joking). She agreed that it wasn't unreasonable. To this day part of me wishes I'd done it at the very beginning. If you want it, it's your call though I don't know how it works on the NHS (you're in the UK right?) Can you choose surgery for proctitis without trying the meds?
Posted 1/27/2013 6:56 PM (GMT 0)
You are not a failure, that is the wrong way to look at this. But if you are indeed tired of diet modification and think it's time to consider surgery then you should open your mind to that possibility.

Everyone with this disease has a different path to remission. I think rather than a failure you have been successful 98% of the time and now have had a setback that has disheartened you. Schedule an appointment with a surgeon to discuss your options. Whatever you decide will be the right thing.

I've followed your posts and know how strict your diet has been and how hard you have worked. Try something else.

Best of good wishes.
Posted 1/27/2013 7:11 PM (GMT 0)
It's been one of the toughest goes for you...
You've been a faithful with what you've been doing. Cannot fault yourself for that...ever!

Can you not use the mesalamine enemas? and a higher dosage of the oral Pentasa?

Hang tough....wanting surgery is always an option.

See how you do with some med changes....from what I've been told by my doc..limited proctitis is most difficult to treat for some patients.

q
Posted 1/27/2013 7:50 PM (GMT 0)
Try mesalamine enemas. These may just help you get into remission if your colitis is only limited to the left side.
Posted 1/27/2013 8:20 PM (GMT 0)
You didn't fail. Don't every think that way.
Posted 1/27/2013 8:22 PM (GMT 0)
I don't think it's wrong to want to have surgery but there is a possibility that you may be able to stay in remission for many years with medication. When I am in remission, I eat whatever I want without consequence. When I am flaring, I eat very light simply because the more I eat, the more I am on the toilet. It's up to you how you choose to treat your UC. If you're ready to accept surgery, you should go on consults and see how you feel about it. I personally don't desire to go through the surgery but if I were unable to eat the foods I love and didn't tolerate medication, I would definitely look into alternative solutions or surgery.
Posted 1/27/2013 8:30 PM (GMT 0)
I don't have the mesalamine enemas I only have that in suppositories. It is so strange that the rest of my intestines seem fine, but the rectum hates me. I have spoke to a surgeon at one point and she said I am not a candidate as I was not sever enough. At that point I was worse than I am now, so they only do that as a last resort in the UK. She thought it may be left sided colitis at that point since I had left and right sided pain. Sometimes I think why do they wait till you are that sick to do any thing?
Posted 1/27/2013 9:01 PM (GMT 0)
I ditto that you did not fail. This may only be a temporary thing. I recently had a bout with a bad virus that threw me for a loop but afterwards I returned to the point that I had been before and maybe even a little better. If you are ready for surgery though don't be afraid of it. Give yourself a chance to get better but if you should get worse don't feel bad about crawling on your hands and knees to the surgeon. Most everyone who has had surgery regrets the fact that they hadn't done it sooner, before taking all of those really bad meds.
Posted 1/27/2013 10:22 PM (GMT 0)
I was flaring on and off for 15 years and was with a Holistic MD during all that time. I landed in the Hospital near dead, passing blood 15 times a day, and went to 127 lbs from 170. All this from one flair. I was hell bent on not doing meds, but at that point I had no choice...Im on Asascol and have been in remission for 2 years for the first time in 15 years of dealing with this violent illness. Were all different, but I sure do wish I tried the meds sooner. Our brains trigger most of the chemistry that runs our bodies, so I would try very hard to not feed thoughts of doom into the mechanics if possible...I know during a flair its not easy to keep calm or trusting...But try not to let thoughts that breed havoc on the system into your world, again if possible...God Bless,
Posted 1/28/2013 3:40 AM (GMT 0)
No such thing as "you failing" with UC. Only meds or diets or methods fail. Keep up the spirit and be strong.
Posted 1/28/2013 4:56 AM (GMT 0)
You definately did not fail! UC is a very hard nut to crack. I have gone down the diet trail and have a naturopath give me supplements that stregthen and help me with my UC to keep it in check. I slipped from myn diet last year in May June, took me awhile to realise I could not get back in remission I started using both pred and salofalk again. Then had to start from scratch as when my naturopath first started my regime. I had been naughty eating KFC, had some pizza, soy latte and a bit of roast lamb that did it, totally screwed up but I am in remission again and am very happy. I understand we are all different and we all take different paths but you "DID NOT FAIL, YOU STUMBLED AND HOPEFULLY YOU WILL CHOOSE THAT PATH THAT SUITS YOU! :) Good Luck.

mum of 3
Posted 1/28/2013 11:02 AM (GMT 0)
Maybe 1g supps..
Posted 1/28/2013 11:03 AM (GMT 0)
Hi everyone,

Thanks for your support. I called the doctor today and he said to keep doing what I am doing. If I am not better by Thursday then he will put me on oral pred shakehead I am so scard of that drug and have been trying to avoid this for the last 4 years. I hope it does not happen. sad

Posted 1/28/2013 11:45 AM (GMT 0)
Hey there, i remember reading something somewhere that says 'to the extent of' that if you have not failed then you have not tried, and if you have not tried then you have failed.
So you have NOT failed, because you are continuing to fight and try different things. Just fighting is the biggest proof that you haven't failed. Everyday as you fight to eat, fight to go work, fight to stay sane, fight to take your meds...etc. All these things require effort and you are the one putting the effort out there, so good on you for doing that. You deserve a good pat on the back.
I remember these dark days, and i wish and pray that one day they will be nothing more than a memory and testament of your strength.

Keep sticking to the diet, hopefully this is just a fluke. Also, since you have proctitis -have you tried squatting for elimination (having a bm)? Like proper squatting the way eastern toilets are made. Google it and you'll see its benefits. Worth a shot IMO.
Posted 1/28/2013 1:58 PM (GMT 0)
ok that is interesting conquer UC I will look at that
Posted 1/28/2013 2:00 PM (GMT 0)
Hellokitty

You really, really, really need to be using mesalamine enemas if your diagnosis is proctitis or anything in the lower region is causing your symptoms. I think using these enemas will make a HUGE improvement for you.

No, suppositories are not the same at all and do not reach enough area to be effective in a flare. I have used both types and can tell you that the enemas are IT baby. You can continue using the suppositories in the daytime but should be using the enemas every night.

I don't recall that you had an allergic reaction to the enemas and if you use the supp's there is no reason you can't use the enemas.

Girl, call your doctor today and get a prescription. If you start them right away you might be able to avoid using oral steroids (but don't refuse steroids because a short course of them could be beneficial for you.)

There are also steroid enemas you could use (again for a short time) but the mesalamine enemas are what you should be using nightly until your flare is over.

Hope you will take this advice.
Posted 1/28/2013 7:14 PM (GMT 0)
I have not heard about them from my GP what are the names of the drugs. Is this a mesalamine enema? Salofalk enema
Posted 1/28/2013 7:16 PM (GMT 0)
yes, as well as asacol and probably Pentasa.   The Asacol has a 1g foam enema (to which we're all envious!)...maybe start with that first.  

q

Posted 1/29/2013 11:02 PM (GMT 0)
ok i will call them and ask them
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