Crohn's Disease Forum » Your Story » Success Stories » Remission for 5 years and counting

07-21-2011, 03:27 PM   #1
Join Date: Jul 2011
Location: Aberdeen, United Kingdom
Remission for 5 years and counting

I thought I'd drop by and share my story, though there's not really much to it (so far). I guess I can consider myself one of the lucky ones when I read some of the horrors some people on here have gone through.

In 2006 at the age of 16, my bm's started to become difficult, and usually with rectal bleeding. I started suffering from abdominal pains, diarrhoea, frequent vomiting and huge amounts of gas, which was at times rather embarrassing. My weight dropped to around 6-7 stone (I'm about 6ft tall). I tried a few remedies for IBS including charcoal tablets, peppermint oil and some others but with no changes (except the charcoal made my stools black), so I eventually went to my GP who seemed to recognise the symptoms almost immediately. I was referred to Aberdeen Royal Infirmary where I was diagnosed with Crohn's.

At first it was a bit of a bombshell, especially since we knew so little about this illness except that a family friend had had a rough ride with it, but I responded well to Pred combined with a liquid diet (which I'm still on partially), and 4x500mg Pentasa daily as maintenance.

It's early days yet I suppose, but so far so good. As I understand it, I'm on a pretty low maintenance, and I've been relatively symptom-free for the past 5 years. Pretty happy with my treatment, everything's been very smooth since my diagnosis. I didn't even require a colonoscopy.
07-21-2011, 03:35 PM   #2
Your Story Forum Monitor
xJillx's Avatar
Join Date: Jan 2011
Location: Pennsylvania

My Support Groups:
Thanks for sharing your story. That is great that you have been in remission for 5 years. I hope you have many, many more years of blissful remission!

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
07-22-2011, 05:32 AM   #3
To save time...Ask Dusty!
Dexky's Avatar
Join Date: May 2010
Location: Kentucky

My Support Groups:
Welcome Artheta!! Have you only been on Pentasa all 5 years? I'd say yours is a very promising success story! Thanks for sharing
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
07-22-2011, 08:46 AM   #4
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Hi Artheta,

Its great to hear success stories such as yours!

I'm happy to hear about your ongoing liquid diet... My son was diagnosed in May with moderate Crohns; his initial treatment was Tolerex (a liquid diet) for six weeks (with no other foods other than broth, jello, etc.) and 5 days of flagyl. He responded well almost immediately to the antibiotics and Tolerex treatment. Once the six weeks ended, his maintenance plan is to continue with the Tolerex (half dosage) with a normal diet (only medication is Nexium (antacid)) for one year.

There has been no discussion re his treatment beyond one year as he is currently being treated at a children's hospital and, almost to the day of his one year maintenance therapy, will turn 18 and transferred to an adult facility and new GI.

I'm curious, what is your current liquid diet? Is it a prescribed enteral diet formula?

Hopefully, my son is lucky enough to respond to his liquid treatment as well as you!

Thanks for posting your story and wishing you continued health!!
07-22-2011, 08:50 AM   #5
Senior Member
SdN's Avatar
Join Date: Sep 2010
That is awesome to hear Artheta thanks for sharing! It gives the rest of us a bit of hope I'm happy to say i have been in remission for 21 days. Not quite 5 years but hey you've gotta start somewhre!
Diagnosed with Crohn's September 2009

50mg Imuran - Jun 2010
increased to 150mg Imuran - Jan 2011
5mg/kg Remicade every 8 weeks - Mar 2011
stopped Imuran - Aug 2011
7.5mg/kg Remicade every 8 weeks - Nov 2011
Remicade is still working - Nov 2014
Colonoscopy shows no Crohn's! - Dec 2014

Current meds - 7.5mg/kg Remicade
07-22-2011, 09:44 AM   #6
Join Date: Jul 2011
Location: Aberdeen, United Kingdom
Thanks so much guys for making me feel welcome here!

@xJillx: Thanks very much, I hope so too. And I wish everyone here were able to join me.

@Dexky: Thanks. Yep, just Pentasa. But I think diet has played an important role too, it shouldn't be overlooked as maintenance. Even so, I'm counting my lucky stars!

@Tesscorm: Yes, I believe so. I don't know that much about it to be honest, but I can tell you the name: Elemental 028 Extra. You can find some info on it on the web: h ttp:/ /w (had to insert spaces in the address because I don't seem to be allowed to post links yet). I get them prescribed on the NHS, I'm not sure about availability in other countries. After diagnosis I took 8 cartons a day and nothing else (not even broth, jello or anything), I now take 4 as maintenance.

When it comes to solid food, I started with the LOFFLEX (Low Fat / Fibre Limited Exclusion) diet a few weeks after diagnosis. I can't find anything about it on the web, but it's pretty simple in that it prescribles a number of foods known to be "safe" in almost all Crohn'ies (Soya, rice, you know the like), and slowly (re)introduces foods.

Thanks again, and I wish your son the best of luck! Crohn's is a horrible illness, but it can be defeated!

@SdN: Thanks, and long may it continue! After 5 years you almost forget what you were like at your worst, when even a few days of relief can seem like a godsend.
07-22-2011, 11:56 PM   #7
Jennifer's Avatar
Glad you've been doing well for the most part these past few years. How often do you do the liquid diet (just curious as you don't usually hear it used for maintenance)?
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
07-23-2011, 04:13 AM   #8
Join Date: Jul 2011
Location: Aberdeen, United Kingdom
I take 4x250ml cartons every day, and have done since coming down from 8 shortly after diagnosis. My dietitian seemed happy enough for me to continue with it indefinitely.

Though I do have solid food too, so I'm not completely missing out. Quite the contrary... sometimes I get a bit adventurous, and then I regret it for the next couple of days (only pain though really, movements are usually pretty normal... except with cheese). It always settles down again though.

Nice to see you've been in remission for 12 years! Though you've been through much more than I have, from reading your story. Same goes for just about everyone on here. I'm very conscious of the fact that I've been VERY lucky!
07-23-2011, 01:21 PM   #9
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Thank you for sharing your story Can you share what your daily diet might look like that causes you no issues and what foods (besides the cheese you mentioned) DO cause you issues? Thanks!
It's good to be back
07-25-2011, 07:16 AM   #10
Join Date: Jul 2011
Location: Aberdeen, United Kingdom
My diet looks something like this... Rice Krispies for breakfast, a toastie for lunch, breaded chicken or fish with (some) veg for dinner, elementals interspersed between them; and diluted fruit juice with every meal.

I avoid dairy and fruit, though not having conclusively eliminated them... the reason is more that they commonly cause problems in Crohns patients, and I can live without them (but I do miss chocolate ). I probably reintroduced foods too fast, but my gut feeling is that most foods are okay in moderation (and I have been well for 5 years).

Maybe it's not completely honest to say that my diet causes me no issues at all... but any disturbances are very mild, and not persistent. I strongly suggest everyone looks into an elemental diet if they haven't tried it already!
07-25-2011, 08:26 AM   #11
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

My Support Groups:
I agree regarding the elemental diet. While we're in VERY early stages as my son was only diagnosed in May, for now, he seems to have eliminated 95% of his symptoms and his only treatment has been the elemental diet and a daily antacid. Prior to being diagnosed, he'd lost a little more than 15 lbs., since leaving the hospital, he has gained 20 lbs. (His only symptoms have been two occurrances of mucus with specks of blood but in both occurrances, it was the only symptom and went away in a day or two.)

The plan is to continue his elemental diet to control his symptoms, at least until he is transferred to an adult GI. But, as Crabby said, I've been told by his dietician that this is not commonly used as maintenance for adults so I'm hoping that his next GI (next year) will be open to continuing this same treatment (assuming that it continues to work for him).

I'm going to start him on some supplements (thinking some type of fish oil, vit D, probiotics plus multivitamin), however, I've held back as he's been reintroducing foods over the last 2-3 weeks and I didn't want to add too much to the mix.

Also, while at the hospital, I was told that the use of these elemental diets is much more common in Europe than in North America and that, in Europe, it is often used as a first treatment option.
07-25-2011, 10:37 AM   #12
Join Date: Jul 2011
Location: Cambridge, Massachusetts
I've found the "Paleo" diet to work exceptionally well for me living with Crohn's disease. There are a number of great free resources available on the web although I prefer listening to/reading Robb Wolf's website.
09-20-2011, 06:15 PM   #13
New Member
Join Date: Sep 2011
Does Ensure work as the liquid diet?? We are new to CD and the GI team told me to let him eat what ever he wants - no limitations or suggestions!!
09-20-2011, 09:01 PM   #14
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Hi Robin,

I'm sorry that your son is going through so much! I hope he starts to feel better soon!

I'm not sure if Ensure is the same as my son's liquid diet. I've read on this forum that there are different 'versions' of Ensure - I know that in Canada, the Ensure that is sold here is NOT the same as the formula that my son has. My son's formula is called Tolerex (made by Nestle) and is ingested through an NG tube. However, there are drinkable formulas that are available in the U.S. (the drinkable formulas were not available to my son).

As far as eating... my son's initial six week treatment was formula only (other than clear fluids), foods were reintroduced gradually until all foods were included. The only foods not allowed were seeds (multi-grain breads, sesame, etc., tomato, cucumber, etc.), nuts (smooth peanut butter, nutella allowed, just not 'pieces' of nuts), corn, and 'peels' (apple skin, potato skins, etc.) and, of course, any foods that 'bothered' him. Our GI gave us the same 'advice' - eat what you like (other than the seeds, etc.) but, I'm a little wary of this... If you search the forum, there are many foods that bother other people... To be on the safe side, I have limited (not completely eliminated) milk (sometimes alternating skim milk with soy), whole wheat (more white bread), high fat foods (McDonalds, etc.). His maintenance treatment, so far, is 1/2 dosage of the formula, 5 nights a week.

My understanding is that the success (for children) of formula (or enteral diet) treatment is comparable to that of steroids with none of the negative side effects. For some reason, this treatment seems to be more often used in Europe than in NA - not sure why??? At my son's last GI appointment, I was given more info regarding the treatment and posted the explanation - I've attached the link.

As the steroids didn't work, perhaps this is something that can be discussed??? I don't have any experience with any of the other medications that you mentioned in your other post but I'm sure you will hear from other members.

Good luck! I hope something starts working for him quickly!

Crohn's Disease Forum » Your Story » Success Stories » Remission for 5 years and counting
Thread Tools

All times are GMT -5. The time now is 12:51 AM.
Copyright 2006-2017