HealingWell
Search Close Search
☰

Colitis Spreading

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/9/2012 12:24 AM (GMT 0)
I was diagnosed with ulcerative proctitis back in the fall of 2010 (at 19 years old, currently 20). I had had blood in my stool for awhile before this and weird cramping occasionally but it was not until this point that the blood became significant and I went to a gastroenterologist. Canasa suppository was the first thing they tried which didn't help, so I was concerned what I would do with school because I was on my winter break getting cramps 15x or so per day. I tried Asacol which seemed to help me just fine and I figured that was that but occasionally there were periods where it was a little worse, but upping the Asacol dose helped.

Well this february or so symptoms got worse. I was having gas pain all the time, going to the bathroom with more blood, etc. My doc put me back on the Canasa in addition to the asacol and it really didn't do anything. So we decided on a hydrocortisone enema which is apparently just like predisone but thought to be perfect for me because it acts quickly and since I only have proctitis it should his the area well without having to take it orally which would give me all of the system negative side effects. Well unfortunately it only seemed to help maybe 25%. I still get cramping very frequently (maybe every 30-60min.) and go to the bathroom 6-8x per day. The cramping is actually the more annoying issue right now (Dicyclomine has done nothing for the cramping). The next step my doctor suggested was 6-mp. I was very ready to do this but my parents are concerned because of the risk of hepatospenic t-cell lymphoma. As I read about it the chances seem low but then again I got ulcerative colitis from my use of Accutane and the chances of that were supposed to be low as well. Plus apparently the majority of people who get the lymphoma from 6-mp are young adult male UC patients, and they die within 2 years or so. So even with a low possibility that is scary.

Also, something very concerning to me, is that my doctor is pretty nonchalant always seeming to believe things will work and not get worse. But I just found out from him at the last visit that when he checked me with scope last time my proctitis was only 5cm and this last time (6 months later) it was 12cm! And I would imagine the chances that he just happen to check it right when it stopped spreading are nil, although when I asked him if it would likely get worse he said he doubted it. I have no idea why he would think that though, and hhe said from the start he didn't think it would get worse. So basically

1. Any thoughts on why it would be spreading or what to expect? It really wasn't too bad before, but now it has become an interference in my life.

2. Any thoughts on treatment? The 6-MP is some scary stuff but immunosuppresants, from what I can tell, are really the only medical option I haven't tried yet.


Thanks a lot
Posted 4/9/2012 12:59 AM (GMT 0)
1. it spreads. expect it to def interfere in your life. Learn as much as you can. GI doc doesnt have UC so he is just a puppet of knowledge. Experience, trial and error, listening to your own body is best. Ask a million questions. Lower stress, keep a food journal, take the supplements you feel work for you.

2. Cant help ya on the meds tip. GI doc best option, pick his or her head then combine with your own knowledge to formulate what you think is best for you.
Posted 4/9/2012 1:29 AM (GMT 0)

ucwarrior said...
1. it spreads.

not always, some UCs just stays in the rectum... regardless it's just as annoying as our pan-colitis because it will make you go to the toilet just as much.
Posted 4/9/2012 1:31 AM (GMT 0)
Mesalamine enemas are a better choice than Canasa suppositories. They reach farther and bring a stronger dose of meds. I'm sorry you are still struggling to find the right treatment and I hope you feel better soon.
Posted 4/9/2012 1:59 AM (GMT 0)
Just wondered why you haven't tried Prednisone before 6mp?

From what I understand treatment usually goes from step 1- 5 ASAs, 2- Steriods (i.e. Prednisone), 3- Immunomodulators (Imuran or 6mp) and then 4- Biologic Therapy (Remicade) 5- Surgery.
Posted 4/9/2012 2:10 AM (GMT 0)

ucwarrior said...
1. it spreads. expect it to def interfere in your life. Learn as much as you can. GI doc doesnt have UC so he is just a puppet of knowledge. Experience, trial and error, listening to your own body is best. Ask a million questions. Lower stress, keep a food journal, take the supplements you feel work for you.

2. Cant help ya on the meds tip. GI doc best option, pick his or her head then combine with your own knowledge to formulate what you think is best for you.

There is a slight correlation with some foods but not that much to be honest. If I eat a lot of carbs then I have more gas in general but other than that I haven't noticed a huge difference. I am very into a bodybuilding lifestyle so on the positive side I eat very healthy but on the other side I need to eat a pretty large volume of food overall at times.

kazbern said...
Mesalamine enemas are a better choice than Canasa suppositories. They reach farther and bring a stronger dose of meds. I'm sorry you are still struggling to find the right treatment and I hope you feel better soon.

Yea he mentioned how the enema would reach a much greater area but if the hydrocortisone/prednisone enema didn't work, and i'm already on 4.8g (six 800mg pills) of asacol orally per day in addition to that I would imagine more of that as an enema wouldn't really do anything right?

Somedude said...

ucwarrior said...
1. it spreads.

not always, some UCs just stays in the rectum... regardless it's just as annoying as our pan-colitis because it will make you go to the toilet just as much.

How much worse is the experience of someone with pancolitis vs proctitis? I was thinking how comparing when mine was 5cm to 12cm is about twice as bad and I couldn't imagine how awful the entire colon (about 1.5m from what I've read so over 10x what I have now) being inflamed would be. A yahoo post mentioned a guy who had it as did his dad and his dads started as proctitis like his did and then spread to pancolitis. My GI doc said in all his time he's only seen one patient go from proctitis to really spreading but in my last visit mentioned that it was also a guy around my age.

ManhattanMama said...
Just wondered why you haven't tried Prednisone before 6mp?

From what I understand treatment usually goes from step 1- 5 ASAs, 2- Steriods (i.e. Prednisone), 3- Immunomodulators (Imuran or 6mp) and then 4- Biologic Therapy (Remicade) 5- Surgery.

I tried the "prednisone" enema, which has helped but not as much as we'd hoped. I was expecting it to almost fully clear up the issue.
Posted 4/9/2012 2:39 AM (GMT 0)
David,

Welcome to the forum.

I'm sorry you haven't been able to get your symptoms under control. It's a tough disease to deal with.

There is a slight correlation with some foods but not that much to be honest. If I eat a lot of carbs then I have more gas in general but other than that I haven't noticed a huge difference

Actually, IMO there is a great correlation between foods and increased symptomology. You could start a food journal and see what correlates come forth. And you could also try a good 2 weeks worth of going gluten free, wheat free, and dairy free - and I think you'll find a decrease in symptoms.

Yea he mentioned how the enema would reach a much greater area but if the hydrocortisone/prednisone enema didn't work, and i'm already on 4.8g (six 800mg pills) of asacol orally per day in addition to that I would imagine more of that as an enema wouldn't really do anything right?

Not necessarily. The mesalamine enemas tend to reach higher and be much more effective, as kazbern has already mentioned.

In the meantime, there are other complementary things you could add to your routine which IMO would greatly help your symptomology, and ultimately in the short term and long term reduce inflammation, which IMO is the goal  - I will include my list here for you:

Here's what's worked for me:

 

1) Diet is key for me: I do the Paleo diet, and I am very, very careful with food combining, because if you mis-combine it creates havoc! Here's some info on it: http://cureforulcerativecolitis.com/step-1-methodology-to-eating

2) Adding L-Glutamine powder 5 grams - for colonic repair. If you're having issues with urgency and diarrhea, then you'll need to take L-Glutamine powder 1 teaspoon mixed in a little water on an empty stomach, and that should alleviate your symptoms alot.

3) Adding slippery elm bark powder - 1 tablespoon mixed in a little water, 3-4 times a day - IMO it is the equivalent in nature to the 5asa's and works much more effectively than all the mesalamines without the side effects.

4) Probiotics are key. If you can get your doc to write you a prescription for VSL#3 DS - that would be better, stronger, and probably cheaper ( IMO 3 x per day at least) than buying VSL#3.

5) Drink lots of good water.

6) Get your vit. d and b12 blood work done, to see if you are deficient.

7) SCD diet - specific carbohydrate diet - many have had lots of success with it. If you can't do it because it's so strict, at the very least do dairy free, wheat free, gluten free. Personally, however I prefer the Paleo diet, because it is an anti-inflammatory diet - mostly veggies, salads,nuts, fish, lots of GRASS-fed animal products like lamb, beef, bison, and eggs, no grains at all. The whole basis of the diet is to concentrate on foods rich in healthy ratio of omega 3 to omega 6, which is ideally 1:1. Grain-fed animal products contain unhealthy ratio of 1:20 which causes and contributes to inflammation in the body, and therefore disease. Also grass-fed animal products contain important CLA, which you cannot get from any other source.

8) start a food journal and see what correlations come forth

9) There's a great app for keeping track of your symptoms, diet, meds, etc...

http://wellapps.com/products

10) Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

11) Adding rectal meds. Are you on any rectal meds like canasa suppositories or rowesa enemas?

12) You may want to add liquid vitamins/minerals to make sure your stomach does not have to do the work of breaking them down, and hence not absorbing them.

13) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig).

14) Astaxanthin is a great anti-inflammatory

 

 

I think the more information you can have on UC and all its issues, the better you'll feel, albeit after you get over the feelings of being overwhelmed by it all (i know, :()

What do you think?

Good luck, and I hope you start to feel better soon.

Let us know how we can help you.


 

Posted 4/9/2012 3:03 AM (GMT 0)

InSoFla said...
David,


Welcome to the forum.

I'm sorry you haven't been able to get your symptoms under control. It's a tough disease to deal with.



There is a slight correlation with some foods but not that much to be honest. If I eat a lot of carbs then I have more gas in general but other than that I haven't noticed a huge difference



Actually, IMO there is a great correlation between foods and increased symptomology. You could start a food journal and see what correlates come forth. And you could also try a good 2 weeks worth of going gluten free, wheat free, and dairy free - and I think you'll find a decrease in symptoms.

Well I'm referring to just my case specifically. As mentioned I lead a "bodybuilder lifestyle" and so I pretty much eat the exact same foods every day. I have tried dairy free and I never eat wheat anyway. What I eat nearly every day I'm at school is oatmeal, chicken, spinach, eggs, cottage cheese, apples, tuna, shrimp, olive oil, fish oil. Occasionally I'll throw hummus and salsa in.


InSoFla said...

Yea he mentioned how the enema would reach a much greater area but if the hydrocortisone/prednisone enema didn't work, and i'm already on 4.8g (six 800mg pills) of asacol orally per day in addition to that I would imagine more of that as an enema wouldn't really do anything right?



Not necessarily. The mesalamine enemas tend to reach higher and be much more effective, as kazbern has already mentioned.


right but wouldn't the meselamine that I'm taking orally (asacol) be systemic and thus get to all parts of the colon anyway? And as mentioned I am using an enema, but its hydrocortisone.



InSoFla said...

In the meantime, there are other complementary things you could add to your routine which IMO would greatly help your symptomology, and ultimately in the short term and long term reduce inflammation, which IMO is the goal - I will include my list here for you:





http://cureforulcerativecolitis.com/step-1-methodology-to-eating</font></u></a></font>
<br]2) Adding L-Glutamine powder 5 grams - for colonic repair. If you're having issues with urgency and diarrhea, then you'll need to take L-Glutamine powder 1 teaspoon mixed in a little water on an empty stomach, and that should alleviate your symptoms alot.

http://wellapps.com/products</a>

http://www.ncbi.nlm.nih.gov/pubmed/21380937</u></a>https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188</u></a>,]https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

11) Adding rectal meds. Are you on any rectal meds like canasa suppositories or rowesa enemas?

12) You may want to add liquid vitamins/minerals to make sure your stomach does not have to do the work of breaking them down, and hence not absorbing them.

13) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig).

14) Astaxanthin is a great anti-inflammatory










I think the more information you can have on UC and all its issues, the better you'll feel, albeit after you get over the feelings of being overwhelmed by it all (i know, :()







What do you think?





Good luck, and I hope you start to feel better soon.

Let us know how we can help you.

Thanks for the list. I've done paleo/keto before....staying strict to a diet has never been an issue for me, but I need carbs for bodybuilding!! lol, but truth be told I really would prefer to keep carbs in. I haven't tried a paleo/keto diet in awhile though so maybe I will again for a few weeks and if its enough of a difference I might stick with it. I'll also look into probiotics and L-glutamine
Posted 4/9/2012 11:47 AM (GMT 0)
David,

 I have tried dairy free and I never eat wheat anyway. What I eat nearly every day I'm at school is oatmeal, chicken, spinach, eggs, cottage cheese, apples, tuna, shrimp, olive oil, fish oil. Occasionally I'll throw hummus and salsa in.


 

It's good you don't eat wheat, but gluten can be found in many produtcts and can be very problematic for many with IBD. From my perspective I do see some problems with the above: oatmeal (contains gluten), cottage cheese is dairy and you may have an intolerance to either lactose or casein (cow protein), hummus can be difficult for some because it's from beans (I know I don't do well with beans of any kind, even ground up ones), and then salsa for me would definitely be out. And then there's the question of food mis-combining as well.

right but wouldn't the meselamine that I'm taking orally (asacol) be systemic and thus get to all parts of the colon anyway? And as mentioned I am using an enema, but its hydrocortisone

No, mesalamine enemas are much more effective at getting to the lower parts of the colon, and is often time more effective than the hydrocortisone.

 

Posted 4/9/2012 12:14 PM (GMT 0)

InSoFla said...
David,


I have tried dairy free and I never eat wheat anyway. What I eat nearly every day I'm at school is oatmeal, chicken, spinach, eggs, cottage cheese, apples, tuna, shrimp, olive oil, fish oil. Occasionally I'll throw hummus and salsa in.




It's good you don't eat wheat, but gluten can be found in many produtcts and can be very problematic for many with IBD. From my perspective I do see some problems with the above: oatmeal (contains gluten), cottage cheese is dairy and you may have an intolerance to either lactose or casein (cow protein), hummus can be difficult for some because it's from beans (I know I don't do well with beans of any kind, even ground up ones), and then salsa for me would definitely be out. And then there's the question of food mis-combining as well.





right but wouldn't the meselamine that I'm taking orally (asacol) be systemic and thus get to all parts of the colon anyway? And as mentioned I am using an enema, but its hydrocortisone







No, mesalamine enemas are much more effective at getting to the lower parts of the colon, and is often time more effective than the hydrocortisone.

I tried taking out cottage cheese and all other dairy for about 2 weeks and didn't notice any difference so I decided to add it back in. It seems like there are mixed opinions of whether or not oatmeal actually has gluten in it, seems to depend on the brand mentioned. Taking out oatmeal for a few weeks could be an option...an annoying one but certainly an option lol, just gotta find another carb source for that time if I try it.

I will ask my doc about the meselamine enemas, it just seemed like everyones reviews were saying the prednisone enema was more effective for them than the meselamine ones.
Posted 4/9/2012 12:26 PM (GMT 0)
David,

How about trying potatoes for carbs?
Posted 4/9/2012 1:27 PM (GMT 0)

InSoFla said...
David,

How about trying potatoes for carbs?

I'll keep that in mind over the summer and get a lot of sweet potatoes, but at college the only real options are 1. a multitude of bread/pasta items 2. oatmeal 3. fruit. I eat oatmeal every day and maybe 1-2 apples per day, although to replace the oatmeal would take ~7-10 apples per day lol oh well.

Given that you do the paleo diet do you supplement with fiber? and in general do people find they have better results with more or less fiber? I know fiber in general has many health benefits but occasionally I'll read that UC patients do better with a low fiber diet.

Oh and is frequent cramping very common? Before I would have these aches that were definitely "colitis" aches rather than in my stomach, but not much cramping. Now I'm cramping up at least every hour. Sometimes its relieved by relieving gas but generally it doesn't seem related to a need to go to the bathroom. As of now going to the bathroom 6-8x per day is certainly annoying but these cramps are the worse part.

Post Edited (David1991) : 4/9/2012 7:40:27 AM (GMT-6)

Posted 4/9/2012 2:32 PM (GMT 0)
Most of the urgency comes from the inflammation near the end. If it spreads, there may be more D and more blood and more mucus, which will interact with the urgency. Getting a rectal steroid or mesalamine med to tame the inflammation can only help. To my understanding, hydrocortisone is quicker and more anti-inflammatory than melsalamine, but upto 40% can enter systemically, so there can be the same long-term issues there are with oral Pred. Again, to my understanding, mesalamine enemas have an anti-inflamatroy effect, but seem to work further up the biochemical chain that leads to inflammation. They can reduce/clear the deformed mucosal cells that are hallmark of UC. Unfortunately the generic mesalamine contains a sulfate that can be harsh and create some bleeding in some people. The name brand sulfate-free version is very expensive. I mix a little hydrocortisone in my generic mesalamine enemas to try to offset the harsh sulfate.

I think this is a good link on rectal meds: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886486/

The Asacol is not really systemic. There is some small systemic absorption, and for a few people this can lead to kidney problems. Yearly tests are suggested. But mostly oral mesalamine is thought to work topically. IMO this is you best insurance against spreading to the transverse and right colon. Less protection in the left and sigmoid colon where they seem to be more challenged to each.

Many of the supplements InSoFla mention do sooth or have anti-inflammatory effect. Some, may also help with toxins leaking through the mucosal lining. It could not hurt to see how some of them seem to sit with you. I use a little aloe vera juice twice weekly and a couple of slippery elm tablets daily. I also take ginger (and sometime ginger and turmeric) supplements.

I got no noticeable benefit form OTC probiotics, but did not try many brands. I am using prescription VSL#3DS probiotic currently and in combination with my oral Lialda and rectal mesalamine (plus hydrocortisone) enemas, things seem to be in check and/or very slowly improving. I started with pancolitis, and Lialda did clear my right and transverse colon, so I am hopeful the mesalamine enemas will clear the sigmoid and left colon. But, it has been half a year since I started rectal meds, and I am beginning to thinkI will need something else. I too am shy of 6mp, and will likely try LDN if I do not get closer to remission by June.

If the dysregulation of your immune system is profound enough, it could spread dispite the Asacol (and even with supplements and probiotics). But IMO, it would spread faster and with more damage without the Asacol and supplements.

Good luck.

Posted 4/9/2012 2:34 PM (GMT 0)
about oatmeal and gluten - from what I can gather, oats are often cultivated with or near wheat, so there can be cross-contamination among the grains. Bob's Red Mill advertises that their gluten-free oats are cultivated far away from wheat fields and their processing plant does not have any wheat or barley or rye in it. They do testing at several steps of their processing cycle to make sure there is no wheat gluten in the oats. I use Bob's Red Mill. I am sure that the oatmeal in your college cafeteria is not gluten-free.
Posted 4/9/2012 2:49 PM (GMT 0)

DBwithUC said...
Most of the urgency comes from the inflammation near the end. If it spreads, there may be more D and more blood and more mucus, which will interact with the urgency. Getting a rectal steroid or mesalamine med to tame the inflammation can only help. To my understanding, hydrocortisone is quicker and more anti-inflammatory than melsalamine, but upto 40% can enter systemically, so there can be the same long-term issues there are with oral Pred. Again, to my understanding, mesalamine enemas have an anti-inflamatroy effect, but seem to work further up the biochemical chain that leads to inflammation. They can reduce/clear the deformed mucosal cells that are hallmark of UC. Unfortunately the generic mesalamine contains a sulfate that can be harsh and create some bleeding in some people. The name brand sulfate-free version is very expensive. I mix a little hydrocortisone in my generic mesalamine enemas to try to offset the harsh sulfate.


I think this is a good link on rectal meds: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886486/



The Asacol is not really systemic. There is some small systemic absorption, and for a few people this can lead to kidney problems. Yearly tests are suggested. But mostly oral mesalamine is thought to work topically. IMO this is you best insurance against spreading to the transverse and right colon. Less protection in the left and sigmoid colon where they seem to be more challenged to each.



Many of the supplements InSoFla mention do sooth or have anti-inflammatory effect. Some, may also help with toxins leaking through the mucosal lining. It could not hurt to see how some of them seem to sit with you. I use a little aloe vera juice twice weekly and a couple of slippery elm tablets daily. I also take ginger (and sometime ginger and turmeric) supplements.



I got no noticeable benefit form OTC probiotics, but did not try many brands. I am using prescription VSL#3DS probiotic currently and in combination with my oral Lialda and rectal mesalamine (plus hydrocortisone) enemas, things seem to be in check and/or very slowly improving. I started with pancolitis, and Lialda did clear my right and transverse colon, so I am hopeful the mesalamine enemas will clear the sigmoid and left colon. But, it has been half a year since I started rectal meds, and I am beginning to thinkI will need something else. I too am shy of 6mp, and will likely try LDN if I do not get closer to remission by June.



If the dysregulation of your immune system is profound enough, it could spread dispite the Asacol (and even with supplements and probiotics). But IMO, it would spread faster and with more damage without the Asacol and supplements.



Good luck.

I had heard that the absorption systemically from the enema would be very small, didn't know it was 40%. I do not seem to have prednisone related side effects as of now but who knows...

I'll try to get my doc to prescribe a meselamine enema and the VSL#3DS probiotics
Posted 4/9/2012 3:08 PM (GMT 0)
Also, is it typical to have no issue holding an enema? When i was reading about them it seemed like people struggled to hold it for an hour or so. For me with the hydrocortisone enema after I'm done I'm not even aware of anything different and just go about my normal activities. I assume I'm doing it right lol.
Posted 4/9/2012 3:23 PM (GMT 0)
David, I am currently dealing with proctitis myself after several years remission from UC affecting my colon. My colon itself is great - no issues but the rectal inflammation is the pits. I starting using the mesalamine enemas at night before bed so I don't have any issues about wanting to eliminate it and it has been working great. I also take my maintenance dose of sulfazalazine to ensure my colon stays under control.

I also added more probiotics and now aloe vera juice which seems to have a calming effect. I also just bought slippery elm to make my own enemas for those in between times during the day. I am trying to hit this inflammation globally and after just a week, blood and urgency is way down.
Posted 4/9/2012 3:43 PM (GMT 0)

RH_Texas_Gal said...
David, I am currently dealing with proctitis myself after several years remission from UC affecting my colon. My colon itself is great - no issues but the rectal inflammation is the pits. I starting using the mesalamine enemas at night before bed so I don't have any issues about wanting to eliminate it and it has been working great. I also take my maintenance dose of sulfazalazine to ensure my colon stays under control.

I also added more probiotics and now aloe vera juice which seems to have a calming effect. I also just bought slippery elm to make my own enemas for those in between times during the day. I am trying to hit this inflammation globally and after just a week, blood and urgency is way down.

So is it that the the rectal area/proctitis generally gives the worst symptoms, so even if it spreads the symptoms might not be much worse? Also does the proctitis give you cramps? Sometimes they're not terrible but other times I really have to stop what I'm doing.

I think I can try the elm, astaxanthin and L-glutamine soon, and will get a script for the probiotics in a week or 2 I guess. Admittedly I'm not expecting a whole lot from these minor things but who knows.

How does one get naltrexone?

Post Edited (David1991) : 4/9/2012 9:54:03 AM (GMT-6)

Posted 4/9/2012 5:51 PM (GMT 0)
LDN needs a prescription and a special pharmacy. You can get a prescription with a telephone consult if you GI won't prescribe. There are several LDN threade here, and a web page for LDN with lots of info.

As for retention, I find the hydrocortisone easier than the melsalamine, and I had soem trouble at first, until the inflamation clamed a bit. It was not so much urgency, as I would wake an hour or two later with the enema leaking, so I hobbled to the tolit to let it go. After a few weeks, generally get through the night. If it is mostly melsalamine, I do sometime wake with a bit of leaking. Less problem when it is mostly hydrocortisone.
Posted 4/9/2012 6:36 PM (GMT 0)
David1991,

Given that you do the paleo diet do you supplement with fiber? and in general do people find they have better results with more or less fiber? I know fiber in general has many health benefits but occasionally I'll read that UC patients do better with a low fiber diet.

I am on Paleo, however my diet consists of lots of salmon (grilled and some smoked), herring, and then lots of grass-fed: eggs, beef, lamb, bison, and in addition salads, some nuts, low fructose fruits, No gluten, No grains, and very little potatoes. Added fiber, no. I don't know why people have this mistaken impression that Paleo diet= fiber.

The other thing I wanted to mention to you is: adding a good quality whey protein shake - made with almond milk.

I have at least 2 a day to ensure I get enough protein and nutrients. I add to my shakes various supplements, liquid minerals and vitamins, and L-glutamine powder (around 5 grams) which is all very important IMO. Frankly, I love my shakes and could not live without them.

Oh and is frequent cramping very common? Before I would have these aches that were definitely "colitis" aches rather than in my stomach, but not much cramping. Now I'm cramping up at least every hour. Sometimes its relieved by relieving gas but generally it doesn't seem related to a need to go to the bathroom. As of now going to the bathroom 6-8x per day is certainly annoying but these cramps are the worse part.

 

I'm sorry you are experiencing the cramping. I think if you try some slippery elm powder after each meal, that will help alot.

And then also adding L-Glutamine: for long term colonic repair you can take a heaping teaspoon (about 5 grams) into some juice or shake, for D take some in a little water on a empty stomach.

Hope this helps.

Posted 4/9/2012 8:00 PM (GMT 0)

InSoFla said...



I am on Paleo, however my diet consists of lots of salmon (grilled and some smoked), herring, and then lots of grass-fed: eggs, beef, lamb, bison, and in addition salads, some nuts, low fructose fruits, No gluten, No grains, and very little potatoes. Added fiber, no. I don't know why people have this mistaken impression that Paleo diet= fiber.



The other thing I wanted to mention to you is: adding a good quality whey protein shake - made with almond milk.

I have at least 2 a day to ensure I get enough protein and nutrients. I add to my shakes various supplements, liquid minerals and vitamins, and L-glutamine powder (around 5 grams) which is all very important IMO. Frankly, I love my shakes and could not live without them.




No I know the paleo diet is typically low fiber, thats why I was asking if you supplement with additional fiber, to bring your fiber for the day up to "normal" amounts (20-30g). Apparently not though. Sounds like your daily fiber must be pretty low unless you're eating a lot of fruit.

I eat 250-300g of protein a day, so I'm covered there lol. I have a whey shake on days I workout but thats more for convenience....can't say I notice any difference with results from it. I also take a multivitamin/mineral every day.
Posted 4/9/2012 8:07 PM (GMT 0)
David,

Actually the chia seeds I put in my protein shakes give me the fiber, but that's not the reason I take it. I take chia seeds for their nutritional profile.
Posted 4/9/2012 10:44 PM (GMT 0)
My parents are dropping off the slippery elm bark, L-glutamine, probiotics (not the VSL#3DS but what they could get for now, apparently it has to be refrigerated), and Astaxanthin tomorrow. We'll see how it goes. If it did help, how long would it take me to notice the effects?

Oh and is it typical for people with UC to be slightly anemic? Since I can recall getting blood work done (every time in the last 2 years) my hemoglobin, RBC count and hematocrit have been slightly under the lowest value of the normal range. I've been supplementing with iron (even though I eat a lot of meat and spinach) the last 2 months so we'll see in my blood work tomorrow if thats changed anything but I doubt it. The thing is the blood work values were no different during times of almost complete remission vs. times when I was bleeding significantly multiple times per day.
Posted 4/10/2012 12:35 PM (GMT 0)
People with Crohn's can be anemic due to poor nutrient absorption in the small bowel. I don't know that UC can have the same effect - there is very little absorption done in the colon, so I would think this would not be an issue.
Posted 4/10/2012 12:42 PM (GMT 0)
David,

There are many UCers who also have malabsorption problems.

I am one of them as well. That's the reason I take liquid minerals and vitamins to make it easier on the gut and prevent it from having to "break it down".

✚ New Topic ✚ Reply
123

HealingWell

Connect With Us
© 1997-2024 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.