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Ulcerative Colitis disappeared??? Please share if similar to yours. IBD in the Philippines

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Ulcerative Colitis
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Posted 3/22/2016 5:52 PM (GMT 0)
Hi everyone! My sister had colonoscopy almost 5 years ago because of severe stabbing pain on her lower left abdomen (ultrasound of pelvis didn't find anything), where the left pelvis is, and bleeding bowel movement. Ulcers were seen. However, being from the Philippines, where this disease is very rare, the Gastro doctor told us that he and most of the doctors here were not familiar with IBD, because of lack of experience and not enough knowledge for specific diagnosis. He even asked if we had any Caucasian blood, because it's mostly a 'Westerner' disease. That, we don't really know of whether we had any.

So anyway, he couldn't then differentiate surely whether it was Ulcerative Colitis or Crohn's. But he was sure it was IBD. With how it supposedly looked, for him it was more of UC.

Unfortunately, he couldn't do further tests because he didn't know much. We just saw on research that you need more tests to be able to differentiate Ulcerative Colitis vs. Crohn's. Sadly, my poor sister has suffered because of not getting proper treatment. She only took Salofalk for a while, but it even caused her more bleeding. The doctor said he didn't know of any other treatment.

Disheartened that doctors don't know much about IBD here in our country, in the next 5 years, we just tried to manage her disease by diet and supplements. That stabbing pain she feels has never stopped, even a single day. Finally, we have tried again this month to see whether there could be a better doctor.

We have found our current doctor who 'specializes' in IBD among Filipinos. He ordered another Colonoscopy. The results are confusing!
- The colon is normal. Not a single ulcer or wound can be seen. All those ulcers seen in the scopes 5 years ago have gone missing. How could it be gone when she stopped taking any medicine?
And she's in a panic mode now because how come she has diarrhea and blood in stool everyday, with stabbing pain, but the colonoscopy results appear to show "endoscopic remission"?

She has celiac disease too, that she gets worst when she eats gluten. Her other symptoms related to IBD are gastritis, indigestion, GERD, allergies and intolerances. But what's mysterious is her weight gain is unstoppable. From the whole ordeal, even with all the bleeding and she has gained 100 pounds.

How could the visible ulcers disappear from the colon, when all the symptoms like bleeding and pain in the same spot in the lower left abdomen, have remained? Could the ulcers just have disappeared? The new doctor said that she could be in remission. But how could it be, when she's in pain? A remission with flare up at the same time? Is there any other type of Colitis that is like this?

Right now, we are waiting for the biopsy results that would come out next week. Our doctor then would tell us more what he thinks that is. But we are hoping to hear from you guys to know if this confusing case sounds familiar to you and what possible explanation there is.

Please share if you can relate to our story or know of a similar development. Thank you much guys!
Posted 3/22/2016 6:39 PM (GMT 0)
1) You can have a flare without ulcers. Whats more important is whether the colonoscopy showed inflammation. 2) If she is having blood in her stool but her colon is clear of any inflammation, and they are sure about the diagnosis of IBD, then they will need to check her small intestine for Crohns. 3) IBD can go into remission spontaneously, happens all the time. But if there is blood, it is not remission.
Posted 3/22/2016 11:25 PM (GMT 0)
Thanks a lot Marauder for your answer!

Visually, in the procedure, the colon didn't look inflamed. Could it be inflamed on a microscopic level that is not visible to the eye?
Also, the pain she feels is on the lower left abdomen, more like where the descending colon is. Is it possible that the pain is coming from her small intestine but is weirdly felt in that left area of the colon?

By the way, they saw some big hemorrhoids on the rectum. Does it relate to IBD or say anything else?
Posted 3/22/2016 11:37 PM (GMT 0)
Hi sisterrific

There have been other people here who have bleeding yet their colonoscopies don't show any source. It is baffling for them and their doctors. It is good news that no inflammation is showing because there is less worry about colon cancer.

Pain and diarrhea can be from IBS not UC. Blood is never IBS-related but could be due to other reasons: hemorrhoids and UC would be the highest probability. Any good GI doc would prescribe rectal meds for the bleeding, mesalamine enemas can be used every night as long as there is bleeding. Steroid enemas cannot be used that long.

Weight gain is mysterious if she has not taken oral steroids. Most people tend to lose weight with UC not gain.

Has she had her thyroid tested? Some people have reported better symptoms after getting their thyroid back to normal. Is she on birth control? Weight gain is normal with that.

Is she eating a lot of carbohydrates and a lot of sugar, including fruit or honey because that is a form of sugar.

Those are my best guesses. Hope it helps. No doctor will do the day-by-day investigation needed to get this disease under control so you and your sister need to do this work. Because she has no inflammation does not mean she shouldn't b taking oral and rectal RX meds. Once there is a confirmed UC diagnosis all US doctors will prescribe RX meds even if there is no inflammation.

edit to add: I saw your reply. Hemmorroids can be the source of bleeding. Surprised her doctor didn't tell her that.
Posted 3/23/2016 12:57 AM (GMT 0)

Marauder93 said...
1) You can have a flare without ulcers. Whats more important is whether the colonoscopy showed inflammation. 2) If she is having blood in her stool but her colon is clear of any inflammation, and they are sure about the diagnosis of IBD, then they will need to check her small intestine for Crohns. 3) IBD can go into remission spontaneously, happens all the time. But if there is blood, it is not remission.

Thanks a lot Marauder for your answer!

Visually, in the procedure, the colon didn't look inflamed. Could it be inflamed on a microscopic level that is not visible to the eye?
Also, the pain she feels is on the lower left abdomen, more like where the descending colon is. Is it possible that the pain is coming from her small intestine but is weirdly felt in that left area of the colon?

By the way, they saw some big hemorrhoids on the rectum. Does it relate to IBD or say anything else?
Posted 3/23/2016 1:05 AM (GMT 0)

imagardener2 said...
Hi sisterrific

There have been other people here who have bleeding yet their colonoscopies don't show any source. It is baffling for them and their doctors. It is good news that no inflammation is showing because there is less worry about colon cancer.

Pain and diarrhea can be from IBS not UC. Blood is never IBS-related but could be due to other reasons: hemorrhoids and UC would be the highest probability. Any good GI doc would prescribe rectal meds for the bleeding, mesalamine enemas can be used every night as long as there is bleeding. Steroid enemas cannot be used that long.

Weight gain is mysterious if she has not taken oral steroids. Most people tend to lose weight with UC not gain.

Has she had her thyroid tested? Some people have reported better symptoms after getting their thyroid back to normal. Is she on birth control? Weight gain is normal with that.

Is she eating a lot of carbohydrates and a lot of sugar, including fruit or honey because that is a form of sugar.

Those are my best guesses. Hope it helps. No doctor will do the day-by-day investigation needed to get this disease under control so you and your sister need to do this work. Because she has no inflammation does not mean she shouldn't b taking oral and rectal RX meds. Once there is a confirmed UC diagnosis all US doctors will prescribe RX meds even if there is no inflammation.

edit to add: I saw your reply. Hemmorroids can be the source of bleeding. Surprised her doctor didn't tell her that.

It's strange, her old doctor never gave her any rectal meds for the hemorrhoid. Doctors here are sadly never experienced, probably like they say they don't have many patients with IBD, or they are just not good simply.

Her weight since growing up has always been problematic. We found out about her celiac disease, years ago, according to a doctor when we were abroad, she stopped eating any gluten, lost a lot of weight and became thin. But after a few years after, even she's on gluten free, she started gaining back and gained more than before when the colon pain worsened. She doesn't eat much but sugars is hard to completely eliminate from her diet. Being from a third world country, there isn't much food that are gluten free. Very few people know what gluten free and celiac disease are here where we live. She isn't on birth control, and her thyroid has always been fine. The mystery is why ever since that severe pain from IBD was felt, that's when she has started gaining more weight.

It makes sense that hemorrhoids can be causing the bleeding. But is it also possible that her big hemorrhoids are causing the pain in her lower left abdomen after all? Or no other pain may be related with hemorrhoids other than during bowel movement?
Five years ago, the doctor said that the pain was because of the ulcers; hence, the ulcerative colitis/IBD diagnosis.
Now, our new doctor seemed clueless why there is persistent pain in that area given that there are no more visible ulcers or inflammation seen during colonoscopy. Now, we also wonder where is that pain coming from?

Aside from location of damage, how do doctors confirm between UC or Crohn's? We read that there's such thing as crohn's colitis; but what steps do doctors take to make a reliable diagnosis of either?

Thanks very much imagardener for your help! We really need the opinion of people here. Your answers guys make things clearer.
Posted 3/23/2016 1:11 AM (GMT 0)
Some women can develop large uterine fibroids which can cause pain, depending on their location, they can also cause weight gain although nothing like 100 pounds. Endometriosis can also cause pain as can ovaries.
Maybe you and she should talk to a gynecologist just to rule these possibilities out.

If you determine that bleeding is likely hemorrhoids and have a clear c-scope you have to investigate where the pain is coming from, which can be a process of elimination of other areas.
Posted 3/23/2016 1:34 AM (GMT 0)

imagardener2 said...
Some women can develop large uterine fibroids which can cause pain, depending on their location, they can also cause weight gain although nothing like 100 pounds. Endometriosis can also cause pain as can ovaries.
Maybe you and she should talk to a gynecologist just to rule these possibilities out.

If you determine that bleeding is likely hemorrhoids and have a clear c-scope you have to investigate where the pain is coming from, which can be a process of elimination of other areas.

We'd probably check for Endometriosis. Before, she had an ultrasound of the uterus and it's normal.

I notice that you have the very same diet with my sister. Aside from gluten-free, she could only tolerate low fruit and vegetable. She could take some lactose, such as ice cream.

You said you had no remission at all for 10 years. What clicked for you?
Posted 3/23/2016 3:20 AM (GMT 0)
You said you had no remission at all for 10 years. What clicked for you?

My back was to the wall because my GI said I'd have to move up to stronger drugs, which I didn't want to do. I'd tried many diets over those years, including SCD twice and saw some improvements but not enough.
So I started again and kept track of everything I ate/drank and symptoms, trying to make sense of what caused problems. I also tried a lot of different supplements people in this forum said good things about. Most of them did nothing good for me but a few of them helped.

My success is 80% Diet, 10% supplements and 10% mesalamine enemas.
No wonder GI's won't discuss diet for UC, it's incredibly hard to figure out and be aware of everything you eat/drink. 95% dose Curcumin is one of the best supplements for me and good for many other diseases too. It has been studied medically and is safe if you get it from a trustworthy manufacturer. I have the same results from curcumin I have from RX med Balsalazide.

Ultrasound of uterus: I had one done when doctors could not figure out why I was anemic due to bleeding. Nothing showed up on the u-sound however a better doctor found a fibroid manually that was the cause. Do I trust vaginal ultrasounds? No.

UC is not just for Caucasians anymore, it is spreading worldwide so Phillipine doctors will have to start learning more about it but the fact is that no doctor has answers, they put us on one drug after another hoping for the best.

From your description your sister may be in remission from UC but has bleeding hemorrhoids. Finding out the cause of her pain will take detective work and perhaps may explain the weight gain (but maybe not).
There are RX meds for IBS pain, ask her doctor.
Posted 3/23/2016 6:24 PM (GMT 0)

imagardener2 said...
You said you had no remission at all for 10 years. What clicked for you?

My back was to the wall because my GI said I'd have to move up to stronger drugs, which I didn't want to do. I'd tried many diets over those years, including SCD twice and saw some improvements but not enough.
So I started again and kept track of everything I ate/drank and symptoms, trying to make sense of what caused problems. I also tried a lot of different supplements people in this forum said good things about. Most of them did nothing good for me but a few of them helped.

My success is 80% Diet, 10% supplements and 10% mesalamine enemas.
No wonder GI's won't discuss diet for UC, it's incredibly hard to figure out and be aware of everything you eat/drink. 95% dose Curcumin is one of the best supplements for me and good for many other diseases too. It has been studied medically and is safe if you get it from a trustworthy manufacturer. I have the same results from curcumin I have from RX med Balsalazide.

Ultrasound of uterus: I had one done when doctors could not figure out why I was anemic due to bleeding. Nothing showed up on the u-sound however a better doctor found a fibroid manually that was the cause. Do I trust vaginal ultrasounds? No.

UC is not just for Caucasians anymore, it is spreading worldwide so Phillipine doctors will have to start learning more about it but the fact is that no doctor has answers, they put us on one drug after another hoping for the best.

From your description your sister may be in remission from UC but has bleeding hemorrhoids. Finding out the cause of her pain will take detective work and perhaps may explain the weight gain (but maybe not).
There are RX meds for IBS pain, ask her doctor.


We're very happy for you gardener that your hard work, like listing down your food and symptoms, paid off in finding the right diet and supplements for you, and living in remission now.

That's a great info about the Curcumin, thanks. We don't know if we have them here. But it's good to know that some supplements can have the same effect with meds such as Balzalazide.

It's unfortunate that doctors here where are living are behind in IBD. Mesalazine enemas were never even mentioned to us. For people who have this disease, and other autoimmune problems like Celiac, it's never advisable to move to Asian countries, such as here where it's rare that people know anything about the term 'gluten' and good enough doctors are too hard to find.

Why didn't you trust the trans vaginal ultrasound? Was it because it's not reliable? You're lucky that your doctor found the fibroid manually. That would never be the case for us here.

Wow imagardener, you are so helpful, thank you very much! You explained how IBS is separated from IBD issues. And you're so kind to suggest Endometriosis. We have never heard of it before. Even when she had a normal ultrasound, the Gynecologist never mentioned that, when she complained much pain in pelvis. After reading your reply, we looked up Endometriosis, and realized that it's too close to her symptoms. After all these years, she most likely has it too, and Ulcerative Colitis was a different issue! We're going to have it checked. And we'll keep posting here about the results. But really, thanks imagardener! With your suggestion, it has new light to her severe condition. Your help is valuable!
Posted 3/23/2016 8:16 PM (GMT 0)
Lot's of us have suggestions but just know no treatment works universally for everyone with uc (medication or alternative). Treatment for uc often involves a lot of trial-and-error whether it's done with a doctor or on your own. In fact, some have taken years to find their effective uc treatment.

Most of us find that we must research and learn a lot about our ulcerative colitis. It's helpful to become your own best advocate for what you need to be well, and suggest treatment options to your doctor.

If treatment for ulcerative colitis isn't good in your area, can you go to a large city or to a large university hospital to seek out doctors with better knowledge of IBD?

It's not uncommon for doctors to not suggest enemas, even in the usa, canada, and uk. Patients have bad compliance with these medications. They're real effective when used as prescribed though.
Posted 11/1/2016 9:47 AM (GMT 0)
Hi sisterrific!

I chanced upon your post here as I too am a Crohn's patients for 14 years, and I'm a Filipino! Been checking forums from time to time to see if there are pinoys with IBD out there.

How is your sister? Have you come to terms with your doctor? Did you find another doctor? There are a lot of doctors, gastroenterologist, here that are knowledgeable with IBD. You just have to find them. Find those who have handled quite a few patients. I know a few doctors.

The difference between Crohn's and UC is in terms of the location and nature of lesions, and symptoms. Like the thickness of the lumen, cobblestoning, ulcerations, rectal bleeding, etc. In CD=there are skip lesions, in UC=the whole colon is affected with lesions. The gastroenterologist will be the one to make that diagnosis.

Im taking maintenance medicine. No major surgeries. Intestines intact. Quite a few lesions here and there. But basically, manageable.

Hope you find this helpful. Let me know if you need any info re IBD in the philippines. You know there are very few of us here. :)

Thanks!



sisterrific said...
Hi everyone! My sister had colonoscopy almost 5 years ago because of severe stabbing pain on her lower left abdomen (ultrasound of pelvis didn't find anything), where the left pelvis is, and bleeding bowel movement. Ulcers were seen. However, being from the Philippines, where this disease is very rare, the Gastro doctor told us that he and most of the doctors here were not familiar with IBD, because of lack of experience and not enough knowledge for specific diagnosis. He even asked if we had any Caucasian blood, because it's mostly a 'Westerner' disease. That, we don't really know of whether we had any.

So anyway, he couldn't then differentiate surely whether it was Ulcerative Colitis or Crohn's. But he was sure it was IBD. With how it supposedly looked, for him it was more of UC.

Unfortunately, he couldn't do further tests because he didn't know much. We just saw on research that you need more tests to be able to differentiate Ulcerative Colitis vs. Crohn's. Sadly, my poor sister has suffered because of not getting proper treatment. She only took Salofalk for a while, but it even caused her more bleeding. The doctor said he didn't know of any other treatment.

Disheartened that doctors don't know much about IBD here in our country, in the next 5 years, we just tried to manage her disease by diet and supplements. That stabbing pain she feels has never stopped, even a single day. Finally, we have tried again this month to see whether there could be a better doctor.

We have found our current doctor who 'specializes' in IBD among Filipinos. He ordered another Colonoscopy. The results are confusing!
- The colon is normal. Not a single ulcer or wound can be seen. All those ulcers seen in the scopes 5 years ago have gone missing. How could it be gone when she stopped taking any medicine?
And she's in a panic mode now because how come she has diarrhea and blood in stool everyday, with stabbing pain, but the colonoscopy results appear to show "endoscopic remission"?

She has celiac disease too, that she gets worst when she eats gluten. Her other symptoms related to IBD are gastritis, indigestion, GERD, allergies and intolerances. But what's mysterious is her weight gain is unstoppable. From the whole ordeal, even with all the bleeding and she has gained 100 pounds.

How could the visible ulcers disappear from the colon, when all the symptoms like bleeding and pain in the same spot in the lower left abdomen, have remained? Could the ulcers just have disappeared? The new doctor said that she could be in remission. But how could it be, when she's in pain? A remission with flare up at the same time? Is there any other type of Colitis that is like this?

Right now, we are waiting for the biopsy results that would come out next week. Our doctor then would tell us more what he thinks that is. But we are hoping to hear from you guys to know if this confusing case sounds familiar to you and what possible explanation there is.

Please share if you can relate to our story or know of a similar development. Thank you much guys!

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