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02-25-2015, 04:46 PM   #31
Cross-stitch gal
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I had really bad nausea with my flare too. It seemed to be worse before and after eating.
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Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

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600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
08-23-2015, 07:06 AM   #32
Babber
 
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Would love some info on diet and natural wholistic management strategies for colitis , I was diagnosed yesterday. Thanks Jojo.
Hi my name's babber and i've been sufferring with uc sibce november 2013 and after a lenthy struggle can say juicing 1 whole washed red cabbage morning and 1 at night will show big change in your problem.
Also avoid eating wheat, gluten, dairy, spice, acidity (fruit, red meat, pulses, etc) and try hydrotherapy. Try eating fresh food cooking from scratch using onions,garlic,cinomon,turmeric,salt,corriander,tym e,corn meal,natrul honey,black strap mollasses,green tea,and plenty of water. These are some of the vital ingrediants i have used in my road to recovery. I know you put this on some years ago but at least somebody might read this some time soon and take it on board. It's helping me in my recovery process. Im near the end of my illness now and i will post when i make a full recovery, so any questions please feel free to ask, because i dont bite
09-25-2015, 11:18 PM   #33
EmilieK
 
Join Date: Sep 2015
Thank you for this feature. After mono with brittle spleen, then proctitis and then U.C. And symptoms came more frequently began at age 17 and now 53. The doctors finally told me I am an indeterminate CROHN'S Colitis Patient. They say I have both. Now doctors argue with me if I really have both! Just asked my gastro for past nine years and he says large bowel CROHN'S. Haven't had constipation for 30 years and as I start to heal from major relapse I have gone from going 12-14x's a day to skipping a full day or day and a half.

Hard to breathe (get this sensation of burning or ice cube at base of throat when on pred or in big relapse) I did notice when I went into an air conditioned room today I could breathe better. I do have exercise induced asthma and these auto immune issues as well as arthritis have a connection, heart beats hard from pred. Really annoying, feels as if a foot is stuck in my rib cage, pressure, swollen. Doc asked me to get eval since I am away from home now, ER three days ago made sure I am not throwing a blood clot and did various scans. Told me a lot of symptoms are from the pred. Also on Budesonide and got my Delzicol. So slow to heal! Eat carefully, rest, taking over a month to get better.

New gastro used Prometheus testing that showed me as only a U.C. pt. that can only be used as a guideline, not a diagnosis tool! Asked me to go off Delzicol and switch to Apriso. Two weeks later after long remission where I ate what I wanted with rare negative issues, was even eating salads! cramps began. I shrugged it off and over a period of months the problem got worse. I was told to add probiotics and after a week I called and said to new doc I wouldn't take Apriso any longer nor probiotics. I wanted my old Delzicol. It got so bad with cramps, nausea, 12 trips or more a day to bathroom I had to go to see my old gastro in another part of the country.

Old doc told me if he had been switching my drug he would have chosen Lialda. It is very scary to change any meds when there is any status quo. I don't even remember now how new doc convinced me to change drug.

The list of drugs used over the years is enormous. Many tests, many colonoscopies. Lots of drugs that cause nausea, cramps, vomiting or don't work. Remicade worked at full dose allowed by FDA, but caused optic neuritis (pain in eye and for me loss of nearly all color vision in one eye for many months).

Praying my attempt to get access to Xifaxan through my old gastro and told insurance today that if they let me have the drug (it worked ten years ago) for me on the 11th night I can get off the regimen I am on to get me back into remission. Xifaxan is hard to get especially for "off label usage". Pred is an awful drug. Using Budesonide now as well. Normally pred. makes all food taste good, now things taste too salty or I have kind of lost my full sense of taste. Might carefully try the cabbage juicing with carrot!

After so many years of this and doing fasting if needed to never need surgery I am growing weary. I am losing my ability to deal with the pain. Mental health, biofeedback, supplements, meditation, acupuncture, special diets, all kinds of things tried over the past 15 years. The only change this time was the change of drug. My gastro told me it is almost the same to go from Delzicol to Apriso but that is why we have different brands he said. So now I deal with the consequences and wonder if it was a coincidence and what to do in the future?
09-26-2015, 12:53 PM   #34
Om3ga1
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and try hydrotherapy.
This can work when nothing else does.
08-08-2016, 06:48 AM   #35
Natasha25
 
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Location: Sydney, New South Wales, Australia
Hi I've just recently been diagnosed with uc last week. My doc said I had a bit of uc. I was a bit confused at what that meant a bit? Does this mean it's not serious?
08-08-2016, 09:35 AM   #36
scottsma
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Natasha,please don't ever think that your diagnosis is NOT serious.It may be mild at present,and hopefully it will continue to be so. But as with any disease,it can quickly deteriorate.I'm not trying to scare you in any way,but keep an eye on yourself,ie; new symptoms,blood,mucus,pain,diarrhea,constipation,fatigue and nausea.......sorry,it seems I've contradicted myself......but you may not get any worse,it's just better to know the worst and be prepared.Many people stay well for years so don't lose sleep over it.
08-08-2016, 01:44 PM   #37
Cross-stitch gal
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Hi I've just recently been diagnosed with uc last week. My doc said I had a bit of uc. I was a bit confused at what that meant a bit? Does this mean it's not serious?
I don't quite understand why they told you that you have a bit of uc either. You either have it or you don't. However...

I went years where I felt great, had no symptoms and no flare. But, then I had a flare that lasted two years straight. This challenge of ours is a true trial and error type of thing. It seems like once you get things figured out, something changes. But, we'll be with you along the way and will be here. So don't be afraid to let us know even if it's just for support.
08-08-2016, 06:05 PM   #38
Natasha25
 
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Thank you for your support and help. Means a lot to be able to talk about this and get answers thank you!
08-14-2016, 02:50 AM   #39
Natasha25
 
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Was just wondering if anyone knows the answer to this. I've just started sulfasalazine a week ago. I was just wondering if this Medicine can worsen diarrhea or am in a flare? I'm really confused if this is a side effect or not.
08-14-2016, 04:19 AM   #40
Cross-stitch gal
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I would think you're in a flare. Sulfasalizine is to treat diarrhea not create it. Here's two links that I'm hoping might help.

http://www.crohnsforum.com/wiki/Sulfasalazine

http://www.webmd.com/drugs/2/drug-62...e-oral/details
08-15-2016, 12:00 AM   #41
Natasha25
 
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Thank you for your reply. I spoke to my doctor today and he agreed it was a flare and doubled my medication.
08-15-2016, 03:46 PM   #42
jwfoise
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Hi I've just recently been diagnosed with uc last week. My doc said I had a bit of uc. I was a bit confused at what that meant a bit? Does this mean it's not serious?
Natasha,

Just to add to what others have said...

I've probably had UC since at least my 20s, but I wasn't diagnosed with it till I was in my 40s (I'm currently 57) - I just always thought I had a sensitive digestive system. Even after my general doctor started to suspect something, we thought various things for a while, like food sensitivities.

My UC is very episodic; I'll go months that everything is fine, than I'll have flare. But with the meds I take, even my flares are generally pretty mild (usually gas and mild cramps).

UC is not currently a disease that gets cured, but managed. Good luck with your managing.
08-15-2016, 04:28 PM   #43
2thFairy
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UC is not currently a disease that gets cured, but managed. Good luck with your managing.
Total colectomy is considered a cure for UC. UC is in the colon; therefore, remove the colon, remove the disease. If you have a return of disease elsewhere, then it was Crohn's disease all along.
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08-16-2016, 08:17 AM   #44
jwfoise
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Total colectomy is considered a cure for UC. UC is in the colon; therefore, remove the colon, remove the disease. If you have a return of disease elsewhere, then it was Crohn's disease all along.
I suppose, though that wouldn't be what I would normally consider "a cure". By that definition, death is also a cure. I assume a similar cure for the common cold would be to cut off your head.
08-16-2016, 04:46 PM   #45
Cross-stitch gal
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I do know somebody who supposedly had UC and told their doctor to cut it out and they did. I was told that they've never had any problems since.

I think I wouldn't go to that extreme unless it were absolutely necessary. Although, I did wonder a few years ago when I was in a 2 year long flare and nothing was working.

Problem is there's nothing that says that if they cut the IBD out of you it won't come back in other parts of your body. I've seen that happen too...

Sorry for the downer.
09-03-2016, 08:57 PM   #46
Natasha25
 
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Hi I was recently diagnosed with ulcerative colitis about a month ago after years of symptoms. My colonoscopy was clear but my biopsies came back with uc. I was just wondering why it wasn't visible in my colonoscopy. Does this means it's not that serious? And has anyone else been diagnosed by just biopsy.


Thank you.
10-16-2017, 05:33 AM   #47
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We welcome your feedback whether positive or negative

On the downside. There are not many people posting here. So have to use the other Crohn's forum for any sort of interaction. Pity the whole forum is not instead just called "I.B.D. Forum" without differentiating too much between the two diseases. On the other hand, just thankful that there is such a good website available.
10-16-2017, 01:26 PM   #48
Cross-stitch gal
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Those of us with either UC or Crohn's have gone through similar things no matter which one we have as part of IBD. Which is why many of us with UC mostly use the rest of the forum more than this part. I myself have very much appreciated talking with any member no matter which variation of our challenge especially when I was sick.
10-16-2017, 02:41 PM   #49
2thFairy
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I suppose, though that wouldn't be what I would normally consider "a cure". By that definition, death is also a cure. I assume a similar cure for the common cold would be to cut off your head.
Yeah... I'm over a year late to respond to this, but by definition colectomy is a cure for UC. Surgeons will tell you this as well. Certain types of cancerous tumors can be surgically removed from the body without further need for treatment such as chemotherapy or radiation and therefore surgery is considered a cure, yes? How is that different than what I said?

Now, having said all that, it has been 5 years since my colectomy and 5 years since my so-called cure. I have not had any further issues with IBD, yet I am still hesitant to say that I have been cured. What I will wholeheartedly say is that I am living a wonderful disease-free life with my ileostomy, Bob. No more pain and no more meds of any kind.
10-16-2017, 02:44 PM   #50
2thFairy
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MaryCherub - Welcome to the forum!
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