CD puzzle #4,897 or "the quest to save my colon"

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patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 12/11/2009 7:28 PM (GMT -7)   
After 5+ years of battling this disease, I finally have the diarrhea under control. My stools are formed and solid enough, and usually pass in 2 to 3 trips to the lou in the morning. That's enough cause for me to do an irish-frickin-jig every morning.

The trouble is the other 15 trips a day to the bathroom, to pass nothing but mucus and blood. No stool at these trips... just mucus and blood and spasms. And urgency.

My GI thinks it's time that I seriously consider surgery (removal of entire colon and terminal ilium). In the mean time, I'm starting Rowasa enemas.

How can it be that I've managed to "fix" my small intestine problems, but am left with this over-powering large intestine problem!!! Rhetorical. SOrry. I'm just frustrated because I feel like I'm SOOOOO close to being "there"... to being better. And now there's talk of surgery.

I've tried to address the large intestine/mucus/urgency issues with:
diet (low dairy intake, and other mucus-promoting foods)
bee propolis
enzymes
probiotics
and every prescription under the sun (asacol, etc.)

any other ideas on how to save my colon? I do love it so. Even if it doesn't seem to love me.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/11/2009 7:33 PM (GMT -7)   
I notice it says you're on helminthic therapy as well. How has that progressed so far, and could it just be a matter of waiting a little bit longer?

Could you try cutting out sugar and higher lactose foods from your diet? Is there any dietary change that could be made at all or does it seem ineffective at this point?

I'm just heartbroken for you so please, forgive the twenty questions thing going on here.

At the same time, surgery may finally give you the relief you've been trying to reach. I can't imagine how frightening it is, but I know a lot of people on here who have done extremely well with it.
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 12/11/2009 8:05 PM (GMT -7)   
Rowasa enemas helped me and I hope they help you also. Waiting until I was very sleepy also helped me retain them when I was sick. You sound kind of stressed out which is of course understandable. Some type of bio-feedback or other stress control might be a good thing.

I find it strange that you have a well formed stool and yet continue to suffer these other symptoms. How about a food diary? Soy seems to bother a lot of us. I read here about some going on a liquid mellow diet of some sort to "rest" the colon. I'm not sure what that would do to your solid stools but it could be worth a try? I use my blue dye but if your colon is in really bad shape and not a good barrier it could let blue dye into your blood stream and that could be DANGEROUS.

I am feeling your suffering here and racking my brain. What do you eat on a daily basis?
I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
I can't make money on this, it's already in your kitchen.  I just want to help.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.  Give it about ten days.  I am NOT a healthcare professional.   Ask your doctor if this is safe for you. 


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 12/12/2009 7:17 AM (GMT -7)   
I appreciate the concern and suggestions, guys - thank you.

I have nothing but the worms to thank for the solid stools. Unfortunately, not enough is known about this therapy to really give me any good timelines... according to what I DO know, they should be in "full force" by this point. Waiting it out might prove me wrong... they might offer more relief later. But then there's always the joyous thought that waiting any more could also land me in emergency colon removal surgery. Or the loony bin. Eeeenie. Meenie...

Cutting out sugar is one thing I have NOT tried, and a dern good idea. I've cut out the lactose and noticed no change in symptoms. I've cut down on the gluten... again - no noticeable difference. Maybe liquid is the way to go at this point. Maybe my colon could use a nap. Can they do temporary poop-bag surgery? Just disconnect my colon for a few months then take a peek - see if it's healing up? If so, hook me back up. If not - then so be it - take it out. Wishful thinking, eh?

My first rowasa enema attempt failed horribly. Am thinking I need to move blankets into bathroom and sleep on the floor with my butt in the air, IMMEDIATELY next to the toilet. Now THERE'S a kodak moment.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 12/12/2009 12:24 PM (GMT -7)   
Stef - you gotta try SCD. I know you did the gluten-free thing, which is pretty close, but SCD is more strict (no rice, etc.) It excludes sugars (from complex carbs) which can be a HUGE problem. Can you give it 30 days? I was having all of the "D", spasms, mucus, blood, searing/burning pains in the abdomen etc and within 7 days 95% of it stopped, within a few weeks I was up to solid bm's. It might not work, but it just might. I know you have tried EVERYTHING under the blessed sun. You are my hero. I'm just thinking what could be a last-ditch effort so that IF you go for the surgery you know you did EVERYTHING possible. Hang in there girl! Try SCD, seriously, just try it. I'm rooting for you!!!

Stef

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 12/12/2009 2:50 PM (GMT -7)   
The SCD has its quickest impact of the SI. It controls the bacteria there by cutting out their food supply. I was having a bit of trouble figuring out how it worked for the large intestine, since most of the food would be digested or fermented by bacteria by the time it reached the colon. Current reading suggests that the inflammation in the colon is at least partly due to one of the characterizing features of Crohn's - fat wrapping around the intestines. It seems that this fat is different from normal subcutaneous fat in that it consumes twice as much glucose as regular fat. One article said that by losing weight on a low glycemic index diet, you will selectively reduce the amount of this fat. The SCD plan is such a diet and so it would work (if it does work for you) by reducing the fat wrapping and the added inflammation that it produces. For more on the fat wrapping, see: http://www.practicalgastro.com/pdf/June06/ArsenescuArticle.pdf

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 12/12/2009 3:33 PM (GMT -7)   
Keeper, my fistulas healed up after about 4 or 5 months of doing SCD. I had figured that bacteria were causing them, and the SCD starved them out. What do you think?

PS, since you've failed the big guns, maybe you could look at alternative meds like LDN. Or maybe see if you can get a product like Modulen to give your gut a rest.
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 12/12/2009 6:14 PM (GMT -7)   
On gluten, I have been told that cutting down is not good enough. It is an all or nothing deal. I had actually thought about suggesting a temporary bi-pass of the colon but decided not to last night. Whatever you do I wish you luck.
I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
I can't make money on this, it's already in your kitchen.  I just want to help.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.  Give it about ten days.  I am NOT a healthcare professional.   Ask your doctor if this is safe for you. 


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 12/12/2009 6:38 PM (GMT -7)   
Spooky - I would think that fistulas are caused by certain bacteria - probably a combination of E coli, Bacteroides fragilis and probably a couple of others. They are adapted to the gut and have ways to avoid the gut immune reaction. My guess about their formation is that a site of damage from either bacteria or the immune response is colonized by bacteria that have secretions that nullify the immune response as far as targeting those bacteria. The immune system then goes into a non-specific inflammatory mode that damages self tissue as much as bacteria. The bacteria then feed on tissue damaged by inflammation. Anyway, the spread of the infection depends on inflammation providing the damaged tissue as much as actual bacterial invasion. Remember, gut bacteria are generally not invasive or we would have a real war happening in our guts. The key then is to control the inflammation.

The most recent idea that has come out of my reading is the the SCD controls inflammation by reducing the amount of enteral fat. This is a specific condition that characterizes Crohn's and is fatty deposits wrapping around the intestines. This only appears in Crohn's. This fat seems to be a source of extra inflammation, since it responds to any gut inflammation with an inflammatory response of its own. It appears that this fat can be reduced specifically by using a low glycemic index diet - low sugar/starch/carbohydrates. Exactly what the SCD does. Have a look at the link in my previous post for more on this enteral fat wrapping.

wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 12/13/2009 7:31 AM (GMT -7)   
I am so sorry you are going through this! I am going through something similar now with the urgency/gas/blood/mucus every 20 minutes, ugh. I am on Remicaide and don't know why this is suddenly happening.

Question, why did you stop taking Remicaide?
32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9 and Vitamin D
 
 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 12/13/2009 9:26 AM (GMT -7)   
You might consider a trial of enteral nutrition before going the surgical route. If it's going to work, you'll usually see significant improvement within 10 days, so you don't have to stick with the liquid diet unless it's helping you.
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