Did anyone start the SCD when they were in remission?

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Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 11/6/2009 11:29 AM (GMT -7)   
I'm curious to know if anyone started the SCD when in remission, and if so, how did you know if the diet was helping you? I'd also like to know if you were on meds at the time.

Or if you weren't in remission, what was your deciding factor on trying SCD? How long did it take for you to notice a difference?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/6/2009 12:54 PM (GMT -7)   
If you go into our search above and enter SCD you will our many posts about this diet. I think you might find your answer there. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/6/2009 12:57 PM (GMT -7)   
I was doing reasonably well when I started SCD. I had been on Humira for a few months (as well as Pentasa). I decided to do the diet to see if it would help my fatigue (unfortunately, it hasn't done much in that area) and to prepare for the day that Humira would quit working.

I knew the diet was helping because:
- constipation finally went away. It was back and forth for awhile, but now it's been several months since I've had any problems

- fistulas and fissures healed. My fistulas weren't enormous, so it only took about 3 or 4 months for them to completely close. I no longer have any blood or pain during BMs, so I know the fissures are healed too. Probably related to no longer being constipated.

- no more cramping during BMs. It took longer for this to go away completely, maybe 5 months.

- much improved appetite and tolerance of foods. I used to drink a lot of Boost because I was never hungry, and ate next to no produce. No I can eat a variety of veggies and fruits, although I'm still cooking them just to be safe.

- weight gain. I used to eat anything I wanted and never gained weight. I guess I'm actually absorbing nutrients now, because I started gaining at around 6 months. I'm 102 pounds now! And have to be careful not to overdo sweet and fattening foods ;-).

- no more acid reflux. I was able to quit taking my Protonix pills (that I supplemented with Rolaids). This was fast, within a month or so. The only time I've had heartburn my whole time on SCD was a few days after surgery in September.

- seasonal allergies at least 75% improved. But I started eating raw local honey at the same time I started SCD, so the honey may be the bigger factor. I'm just glad I no longer have such a horribly itchy throat!

Hmmm...I think that's most of the good stuff. I had the 3 month flair, which apparently almost everyone has, but after that, things improved steadily. I'd say you would want to follow the diet strictly for 6 months before thinking of throwing in the towel, because that should give you time to see improvements.

I think the homemade yogurt is extremely important. People who can't eat it seem to make much slower progress.

Now that I'm almost a year in, I may think about trying a little bit of fresh fruit or veggies. Yum!
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


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 11/6/2009 1:27 PM (GMT -7)   
Spookyhurst, thanks for your answers. Your results are encouraging. I'm kind of in the same mindset as you, I want to try the diet in case the Remicade stops working. Did you quit Humira after you started feeling better, or did you find that it stopped working?


I'm also wondering if many people start the diet in the hopes that they can completely get off their meds, or if they do it as a complementary piece to their medications. (You don't have to answer that unless you want to, I'm just wondering in general.) When I first read about it, my first thoughts were, OK, I can do this and get off all my meds. Now I'm not so sure, just concerned about the bad possibilities if I do go off...but I'm hoping that once I am 100% strict with the diet, I may be able to drop down to a med with less severe possible side effects.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/6/2009 8:03 PM (GMT -7)   
I was on Humira up until my surgery in September. My surgeon told me I could stop it, but today I saw my GI, and she thinks I should stay on it. She's going to consult someone, and I hope that they say no on Humira. I'd been on it for over a year, so who knows if it's even doing anything anymore.

For now, I'm in no rush to get off Pentasa. I figure it's pretty harmless. Maybe if I'm in remission for a couple of years I'll try reducing it.
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


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/7/2009 10:03 AM (GMT -7)   
I had a similar experience to spookyhurst, however, I am 3 months into the SCD and still not able to tolerate the SCD yogurt yet. But unlike with her, I am able to eat raw fruits and high fiber foods (they seem to agree with me.) I also noticed that when I started the SCD the horrible case of exuma I had disappeared completely. I also stopped having gas and just generally have more energy. I have not yet been able to get off my steroids (Entocort); however I noticed that if I cheat on the diet -- even just a little bit -- I experience pain and discomfort. At the beginning of my diet I was in northern Italy for a day and couldn't help but to have some pasta and pizza (without cheese.) Within a few hours I was feeling considerable pain and discomfort and this was while I was still taking full steroids! It is possible that the continued problems I've had, even while on the SCD, could be due to a stricture, in which case I may have to have surgery to get it removed, but I would recommend that almost anyone give it a try.
34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/7/2009 12:54 PM (GMT -7)   
CH, I've been following the stages at pecanbread on when to introduce foods. They recommend cooked veggies/fruits to give your digestive system a break so it can heal.

I had a stricture too. In late September I had surgery to remove 11 cm of my terminal ileum and 5 cm of my cecum.
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


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/8/2009 6:42 PM (GMT -7)   
Hey spooky,

Yes, I think I remember you talking about your surgery right after it happened. If I remember correctly, you said it was done by laparoscopy, which is quite amazing considering how much easier I hear a laparoscopy is than a traditional surgery. My stricture is, according to my doctor, a "badly diseased 10cm section concentrated in the lower jejunum" (which is actually in the middle of the small intestine) so I'm not sure if a laparoscopy could be done. The doc said that the strictured area is only 5mm wide all the way through! Even the slightest inflammation results in excruciating pain. Somehow the rest of my intestines -- even the terminal illium, which was a festering mess when I was first diagnosed with CD 12 years ago -- is "disease free" according to my doctor. Oh Crohn's!

Best,
CH
34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/8/2009 9:11 PM (GMT -7)   
I would think it could be done laproscopically, since there's only a single stricture. My old GI said I would have to have open, and he was wrong. So it's worth getting a second opinion.

I think my stricture was 7 mm.

Oh, and I used to have severe perirectal disease. Now? I have a happy perirectal region :-). The way things change with crohn's is crazy! My old GI wanted me to have all that cut out. Thankfully, I didn't listen. The only reason I finally had surgery was because the problem was scar tissue, and nothing's going to heal that.
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


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/9/2009 8:38 AM (GMT -7)   
Oh geez, sorry to hear about that :-( The recovery time was hopefully not too bad.  One of the benefits, I believe, of having open surgery -- this is kind of disgusting -- but my doctor told me that the go over your entire intestinal tract by hand to check for other damaged areas that the CT scans might have missed.  It's not really an image you want to picture, but still it sounds good that they actually check things out while they have gone to all the trouble to cut you open.  Do you know how do they determined scar tissue in your case versus inflammation?  Or do they not know until they actually cut it out?  Best, CH
34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/9/2009 1:50 PM (GMT -7)   
I had a colonoscopy in May, and my GI couldn't get past the narrow spot (here's a picture: http://s43.photobucket.com/albums/e373/spookyhurst/?action=view¤t=colon.jpg ). Then I had a CT enterography which showed how big the stricture was, and I think they could also determine that it was scar tissue.

I think they can check out your intestine with laproscopy too, because my surgeon said he was going to. But I have no idea if they can do as good a job as when you have open.

Recovery time was pretty good :-) . I was only in the hospital for 2 1/2 days, and took pain pills for less then a week.

*activated your link*

Post Edited By Moderator (Nanners) : 11/9/2009 2:08:54 PM (GMT-7)


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/11/2009 7:58 AM (GMT -7)   
The link should read:

http://s43.photobucket.com/albums/e373/spookyhurst/?action=view&t=colon.jpg

Wow! You did have quite a bad stricture! Was it in your small bowel or colon? I had thought you said it was the terminal ileum. The scars look like you did have a laparoscopy. I guess since they didn't see inflammation when they did your colonoscopy that they must have concluded that it had to be scar tissue(?) With mine I am somehow able to eat as much fiber as I want when I'm not already having pain. To me this suggests that my stricture is -- at least in part -- caused by inflammation.

I am taking MSM because I have read anecdotally that it helps to soften, and even break down, scar tissue. I figure it is worth a shot as lab tests have shown it safe to take over the long term. I will consider it a plesant surprise if it ends up helping with my strictures (emphasis on the word surprise.)

+ 34 year old male
+ Moderate-to-severe Crohn's Disease DX in 1997
+ Currently taking 9mg entocort and 40mg prozac
+ SCD for past 10 years
+ 4,000 mg MSM, Calcium, Vitamin D, and Multivitamin
+ Section in lower jejunum is badly strictured (5mm wide opening continues for 10cm!) but otherwise no other problems
+ No surgeries so far


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/11/2009 5:49 PM (GMT -7)   
The stricture was at the ileocecal valve, right where the small and large intestine meet. There wasn't any visible inflammation, but when they did biopsies, it showed microscopic inflammation.

I hope the MSM works for you! That would be great to not have to have surgery. However, missing 16 cm of bowel doesn't seem to have impacted me negatively. Thank goodness for that :-).
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

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