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05-16-2011, 02:47 PM   #1
David
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Your Ulcerative Colitis Support forum

Greetings,

We've decided to create a dedicated Ulcerative Colitis support forum as people with UC tend to get drowned in the sea of Crohn's folks here. If you have UC, you're more than welcome to post in other forums (and vice versa) but we thought we'd test out providing you all with your own disease specific forum. As always, we welcome your feedback whether positive or negative
05-19-2011, 07:26 PM   #2
KaLa
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Thanks, David! This is really helpful.
11-04-2011, 05:05 PM   #3
Jojopearl75
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Greetings,

We've decided to create a dedicated Ulcerative Colitis support forum as people with UC tend to get drowned in the sea of Crohn's folks here. If you have UC, you're more than welcome to post in other forums (and vice versa) but we thought we'd test out providing you all with your own disease specific forum. As always, we welcome your feedback whether positive or negative
Would love some info on diet and natural wholistic management strategies for colitis , I was diagnosed yesterday. Thanks Jojo.
07-11-2012, 02:59 PM   #4
Jmoran
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Our son is trying hard to get better. We are using Remicade but finding that it only lasts for 4 of the 8 week wait and looking at surgery. Any suggestions for prolonging the time in between the treatments? He is just now 16.
Thanks
09-14-2012, 12:10 PM   #5
ndw0317
 
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Thank you, David!!! This is great!!

I have an update - My GI put me on Remicade durning my last flare (unspeakable pain), and I have completed the induction phase. It's WONDERFUL!!! I have no side effects and no bad reactions so far. I have been able to slowly taper off the Prednisone and in about 1.5 weeks should be off of it completely!!

In other news...I am able to run again and am training for the Las Vegas Rock 'N' Roll half marathon with Team Challenge for the CCFA. This means I am fundraising for the CCFA too. I have a question regarding that. Could you send me a private message?

Thanks so much!!
__________________
Dx: Severe UC 4/30/2012
Current Meds:
Xanax
Remicade
40 mg Prednisone
Vicodin
One a day multi vitamin
Calcium, Vitamin D3, Magnesium Supplement
Triple Strength Omega3 (Fish Oil) Supplement
Probiotic Supplement

Flaring again.

Running 13.1 miles for a cure! Click the link http://www.active.com/donate/nwpLV12/tcNWillia to join the fight and help me reach my goal!

Previous Meds:
4800 mg Asacol
01-17-2013, 07:33 AM   #6
nige
 
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Last edited by nige; 01-22-2013 at 07:19 AM.
06-15-2013, 09:15 AM   #7
dokit
 
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Hello everyonne;my colitis started after taking b6 50mg. Puritan pride with niacin 500mg thomsons;I experienced severe pain.I manage it by protein diet and antibiotics.it gave me severre colon dilatation and muscle contractions.
Let's be careful with this supplements
07-25-2013, 10:34 PM   #8
Sabrinayetman
 
Join Date: Jul 2013
Location: Oshawa, Ontario
Hi my name is Sabrina and I was just diagnosed with UC today.. I'm new to this site and would like to know more about this.. I'm only 32 years old and have 2 young children.. I'm still in shock and was wondering if I can get some feed back regarding UC..

Thank you
07-26-2013, 09:12 AM   #9
scottsma
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Hello Sabrina and welcome to the forum.I'm very sorry you've been dx'd with UC but you are on THE best forum for advice and support and friendship.I'm not the best person to offer advice,as I'm VERY lucky that my UC (Proctitis) Has been more or less manageable since I was dx'd 7yrs ago.There is lots of advice on diet,meds etc on the forum,and I'm sure someone will be along soon to chat to you.Hope you are having a good day today.
07-26-2013, 03:08 PM   #10
mama21princess
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I'm sorry for your diagnosis. I was just diagnosed with UC in May, myself. I'm 33, and I have a 3 year old daughter, so we are in a similar situation. This is a great place for information and support. Have they started you on any medication?
07-27-2013, 07:27 AM   #11
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Hi Sabrina,

We're all in the same boat here. Always happy to PM back and forth if you need to. I know I needed advice when I was first diagnosed.

Juliet
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Diagnosed: UC-December 2011
Meds: Tried and failed on: Pred, Azathioprine, Cyclosporin, MP6. Not ready yet to try methotrexate. Currently on Pentasa, Pentasa enemas, colifoam, imodium, suppositories, B12 injections, Vitamin D and probiotics. Starting Remicade August 2013.
Surgery: Appendectomy March 2013.
07-30-2013, 12:44 PM   #12
jwfoise
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Hi Sabrina. You are in good company here.

For many of us, the diagnosis can actually be somewhat of a relief, since many of us had GI problems for years and never knew why or what could be done about it. But once recognized, it often can be managed pretty well.

If you are game to share, you might tell us more about your diagnosis, what triggered your doctor visit, and what meds you might be on.

I've been diagnosed for over 10 years. I'm on Asacol and a probiotic, and my UC is pretty well managed, though we all have those bad days.
11-16-2013, 07:35 PM   #13
rambo2413
 
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I've had U.C. for over 25 years. Remicade is the only drug that has worked. I've had a some
what normal life for the last year since on Remicade infusions every 8 weeks. Good luck to all with U.C.
12-09-2013, 02:34 AM   #14
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Suppose I had better reintroduce myself…

I was originally diagnosed with - and treated for - Crohn's disease back in 2009, but after another (more successful!) colonoscopy this year, I have been rediagnosed with Ulcerative colitis.

Currently taking Prednisolone and 6MP. Have been on pred most of the last 4 (almost 5) years and have osteopenia because of it. Also developed ITP in Dec 2009 after starting Azathioprine, which is why I have been on pred so long as it is also used to treat it.

Mesalazine and pentasa had no effect on me at all and I am beginning to think that the 6MP isn't working either as I have been on it for 6 weeks and do not feel any better yet. The nausea from taking it is pretty horrible though.

My posting in the Crohn's areas was a bit sporadic, but I'll try and get involved more here
06-25-2014, 12:14 AM   #15
Esther Rokk
 
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Would love some info on diet and natural wholistic management strategies for colitis , I was diagnosed yesterday. Thanks Jojo.
I have had ulcerative colitis for about 20 years now. It is only fairly recently that I have made diet changes under the guidance of my Naturopath. He/she will work out exactly what changes you need to make, supplements needed, probiotics to take and what is most likely irritating your colon. I found the advice I received worth its weight in gold. I am so much improved, have much more energy and have put on weight - almost too much weight!

Everyone is so individual that you really need an expert to advise on these sorts of things. It is very worthwhile and you will find yourself steadily healing and gaining strength.
07-26-2014, 05:02 PM   #16
Ann Morgan
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Sabrina: I started having symptoms of Ulcerative Colitis when I was 37 years old. I was having diarrhea all the time. I went to some Internal Medicine Doctors and they performed a lower GI and a Sigmoidoscopy. I think they told me I had IBS, which is Irritable Bowel Syndrome and then they told me to eat more fiber. They never performed a colonoscopy on me at the time ( that was 1997 ). So, I was miserable for a few more years because I gave up on doctors. In 2006 I saw a Gastroenterologist and I had a colonoscopy ( my first ) and I was diagnosed with Ulcerative Colitis. I had a second colonoscopy in 2009. It was such a relief to have a diagnosis. I was still having the diarrhea, but at least I knew WHY I was having the diarrhea. I first was on Asacol, but now I am on that expensive Lialda ( which I am currently applying for assistance from the manufacturer to cover the entire cost. ) I also have been taking Cholestyramine Powder, something my old Primary Care Physician prescribed to me. I don't know exactly how the Cholestyramine works, but if I DON'T TAKE IT I have terrible yellow, watery diahrrea and I feel really sick all around. RIGHT NOW I have had CONSTIPATION for three months !
What's up with that ! Really, I had diarrhea for 17 years and now all of a sudden I am constipated. I see my new Gastroenterologist on July 30, 2014. I have never been prescribed any heavy medications and I have never had any surgeries on my colon. I have had a anal fistulectomy and two rectal abscess surgeries.

I have been reading here about "flare ups" ......what really IS a flare up ?

I have been reading here about probiotics ?.......what is probiotic and how

does it work ? My Nutrionist recommended probiotics but that is something

I wound not consider taking unless my Gastroenterologist approved it.

Sorry this is so long.
Thanks for listening.
07-28-2014, 09:07 AM   #17
jwfoise
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I have been reading here about probiotics ?.......what is probiotic and how

does it work ? My Nutrionist recommended probiotics but that is something

I wound not consider taking unless my Gastroenterologist approved it.
Hi Ann. I have UC too. I've been diagnosed for about 10 years. Mine doesn't sound as bad as yours.

I take Asacol (well, the new version of the same thing) and a probiotic. The probiotic isn't a cure, but it does help me.

As to what it is - it is actually a bunch of "good" microbes in a dry form (a pill). There is a lot of evidence that having the "right" microbes in your gut can help a lot of digestive problems.

I agree with you about working with your Gastroenterologist about it. My doctor and I discussed it over the course of about a year, and then did a one month on/ one month off trial, and have been on them ever since.

As far as what a flare is.... for many of us, these diseases are episodic. In other words, we have periods of time we are fine, or at least better/not as bad, and then we'll have a period of time where our symptoms are bad or very bad. That bad period is a flare.

For a lot of us, there is a trigger that sets off a flare. For some people it is a food they are senstive to. For me (and others) it is stress. Flares can last from days to months.
07-28-2014, 09:11 AM   #18
jwfoise
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I also have been taking Cholestyramine Powder, something my old Primary Care Physician prescribed to me. I don't know exactly how the Cholestyramine works, but if I DON'T TAKE IT I have terrible yellow, watery diahrrea and I feel really sick all around. RIGHT NOW I have had CONSTIPATION for three months !
I never heard of Cholestyramine, but wikipedia is my friend...

Cholestyramine is commonly used to treat diarrhea resulting from bile acid malabsorption.[1] It was first used for this in Crohn's disease patients who had undergone ileal resection.[2] The terminal portion of the small bowel (ileum) is where bile acids are reabsorbed. When this section is removed, the bile acids pass into the large bowel and cause diarrhea due to stimulation of chloride/fluid secretion by the colonocytes resulting in a secretory diarrhea. Cholestyramine prevents this increase in water by making the bile acids insoluble and osmotically inactive. Postileal resection patients should use this medication cautiously, however, because bowel surgery heightens the occurrence of small-bowel obstructions, and several cases are reported in the medical literature of cholestyramine causing bowel obstructions.[3]

Cholestyramine is also used in the control of other types of bile acid diarrhea. The primary, idiopathic form of bile acid diarrhea is a common cause of chronic functional diarrhea, often misdiagnosed as diarrhea-predominant irritable bowel syndrome (IBS-D), and most of these patients respond to cholestyramine.[4] It is beneficial in the treatment of postcholecystectomy syndrome chronic diarrhea.[5][6] Cholestyramine is also useful in treating postvagotomy diarrhea.[7][8]
I would definitely talk to your Gastro about this and make sure you actually have the bile acid problem. I wonder if you are just on the wrong dose; maybe less would help the diahrrea without giving you constipation.
08-08-2014, 08:00 PM   #19
Ann Morgan
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dear jwfoise: Wow, thanks for that definition of Cholestyramine ! I never knew that much about the cholestyramine until today ! I just got a new Gastro and I told him about the cholestyramine. I told him that if I don't take it twice a day I get really, really sick and have the watery, yellow diarrhea in addition to vomiting, dry heaves, bloating.( OMG, I HATE DRY HEAVES ). He made it sound like he wanted me to eventually go off of the cholestyramine. This sent my mind into a panic ! He has no idea how sick I get when I don't take it. If I did not take the cholestyramine any longer, I would be homebound and sitting on the toilet all day long and wearing adult diapers. Today I skipped one dose just to see what would happen if I just took it once a day instead of twice a day. I have tried this before with bad results. It just sounds so stupid to take the cholestyramine to make me NOT have diarrhea, and then take Miralax to soften my stool. I hope my new gastro hooks me up with some good medication(s) to help me.

Ok, I had my gallbladder removed in 1995, would that create a bile acid problem ? I thought the gallbladder stored bile ? Well, I have my colonoscopy on August 21st and then my new gastro will determine what course of action we will take regarding the constipation. I wish I had a computer printer so that I could print out that definition. My old printer broke a while ago. I think I will buy a new printer soon because this is about the third time I have needed to print something important and I can't do it. Thanks for listening. You guys are really helping me understand Ulcerative Colitis.
08-08-2014, 08:11 PM   #20
Ann Morgan
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I have lost 25 pounds since I started to have severe constipation in the middle of May 2014. The first seven weeks after getting the constipation I lost 20 pounds. And since the third week of June 2014 I have lost 5 more pounds. I am obese and losing the weight has been great and is surely going to improve my health in the long run. Has anyone else experienced weight loss because of their colitis constipation ?
08-10-2014, 08:27 AM   #21
2thFairy
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I have lost 25 pounds since I started to have severe constipation in the middle of May 2014. The first seven weeks after getting the constipation I lost 20 pounds. And since the third week of June 2014 I have lost 5 more pounds. I am obese and losing the weight has been great and is surely going to improve my health in the long run. Has anyone else experienced weight loss because of their colitis constipation ?
Very few people with ulcerative colitis experience constipation. It is much more common for us to have diarrhea and weight loss that follows that. Those with Crohn's colitis may have experience different types of weight loss and some do have issues with constipation, rather than what is most commonly found in patients with ulcerative colitis.
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08-10-2014, 02:37 PM   #22
jwfoise
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He made it sound like he wanted me to eventually go off of the cholestyramine. This sent my mind into a panic ! He has no idea how sick I get when I don't take it. If I did not take the cholestyramine any longer, I would be homebound and sitting on the toilet all day long and wearing adult diapers. Today I skipped one dose just to see what would happen if I just took it once a day instead of twice a day.
Don't panic (in large friendly letters) and don't experiment.

Don't go by what "he made it sound like" - ask him directly what he thinks and what he wants to try/do. And if you don't like the plan, tell him your concerns. Make sure you and your gastro are on the same page and then work with him on developing something that works for you.
08-10-2014, 09:01 PM   #23
Hope345
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My daughter was diagnosed with ulcerative colitis 3 years ago. (first diagnosed as Crohns)

things are NOT going well for her. She currently deals with cramping almost right after eating and then major pain while having a bowel movement. she can rarely leave the house, she has major anxiety...bleeding, mucous.... much sadness right now.

We have tried Remicade, Asacol, Imuran, Mercaptorpurine and then changed over to a naturalpath. I think there has been some slight changes, but she is not totally commited and wants to go back to the regular GI. She is not quite 16 and I plan to call every GI in town tomorrow to find one that will treat her and is willing to also do standard meds and natural meds. I feel her life depends on this.

I so want her to reach out to other teens and find out she is not alone. I have tried, but she shuts down. I pray it happens soon. any ideas anyone?

best to all and hope you all find the meds that work for you.
I pray the new meds coming out will work well for those who dont seem to respond to the immunosuppressants.
__________________
Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
08-10-2014, 09:34 PM   #24
Ann Morgan
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dear 2tjfairy: I had diarrhea for 17 years and then just started to get the constipation in May 2014. This is all so bizarre. The first two weeks of May I only had one bowel movement per day and it was firm. I was quite happy, actually, about the one bowel movement a day thing because it was a whole lot nicer than having diarrhea 2-6 times a day. But by the middle of May it became almost impossible for me to have a bowel movement. My hemorrhoids are screaming right now.
08-10-2014, 09:46 PM   #25
Ann Morgan
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dear jwfoise: Thanks for the advice. I had been seeing my previous Gastroenterologist for 8 years and I really liked him. But now I have new health insurance and he is not on my new health insurance plan. So, I had to change to a new doctor that I don't really know. I saw him once for a very short visit and we really did not talk too much. You know how it is with doctors sometimes, you only get 10-15 minutes with them and then they are on to the next patient. I suffer from anxiety, so when I go to see doctors I have to slow my brain down. Sometimes I have a habit of talking too much and too fast. I just have to let the doctors know what is going on with me without rambling on too much. I just have to take a deep breath. I am sure once I really get to know my new doctor, I won't be so unsure of everything.

PS: Ok, I was concerned about the anesthesia for my colonoscopy on August 21st ( which is being done at the doctors office building ) so I actually called the anesthesiologist to find out if I would be totally sedated or in just "twilight" sleep and then I also asked what kind of drug he was giving me to sedate me. He was a very nice guy and he explained everything that he would be doing. I just wanted to make sure I was not awake at all. I would freak out if I was the least bit awake during that procedure. I have had three colonoscopy procedures in the past and I was totally sedated and I had no ill effects after the procedure. Two of those colonoscopies were done at a SurgiCenter and one was done in the hospital. Thanks for listening.
08-11-2014, 07:56 AM   #26
jwfoise
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My daughter was diagnosed with ulcerative colitis 3 years ago. (first diagnosed as Crohns)

things are NOT going well for her. She currently deals with cramping almost right after eating and then major pain while having a bowel movement. she can rarely leave the house, she has major anxiety...bleeding, mucous.... much sadness right now.

We have tried Remicade, Asacol, Imuran, Mercaptorpurine and then changed over to a naturalpath. I think there has been some slight changes, but she is not totally commited and wants to go back to the regular GI. She is not quite 16 and I plan to call every GI in town tomorrow to find one that will treat her and is willing to also do standard meds and natural meds. I feel her life depends on this.

I so want her to reach out to other teens and find out she is not alone. I have tried, but she shuts down. I pray it happens soon. any ideas anyone?

best to all and hope you all find the meds that work for you.
I pray the new meds coming out will work well for those who dont seem to respond to the immunosuppressants.
If you can convince her to join this forum, there is, I believe, a fairly active teen group.

Working with my GI I take both Asacol and a probiotic and that combo works pretty well for me.

I know there exists pediatric GIs, though I don't know if there is one near you, but that might be something to try to find.
02-10-2015, 04:31 PM   #27
pippy
 
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my dr wants to put me on immuron (sp) -any input? many thanks
02-25-2015, 01:45 AM   #28
Cross-stitch gal
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Azathioprine (Imuran) can work just fine for UC. Dusty in fact just started a thread on it. I've even been on it once myself. If my 5asa quit working, I wouldn't hesitate to go back on azathioprine...
__________________
Diagnosed:
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)

Non-Meds:
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
02-25-2015, 03:32 PM   #29
buttER
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Has anyone else had nausea with their flares? I don't understand why I am so nauseous when I only have left-sided colitis. I found the nausea worse than the diarrhea. Luckily the Asacol had cut the number of bad days.
02-25-2015, 04:09 PM   #30
2thFairy
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I had really bad nausea with most flares. Saltine crackers were always by my side. I sympathize with you.
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