Crohn's Disease since 1983 - Crohns Disease Forum - Support group and forum for IBD, Ulcerative Colitis and Crohn's Disease

bjeffrey · 10-27-2009, 03:57 PM

Hello GROUP!

I recently found this Group online and thought it would benefit me and hopefully benefit others with our lifelong disease.

I was diagnosed with Crohn's Disease in 1983 in Boston. I had lost 25 pounds and was in 'terrible' shape during my later college years. I was told by a surgeon and my new GI that I was not needing surgery. Instead of surgery they decided on something different, bowel rest. So for 12 days, I was living life hooked up to 3 IVS; TPN/Lipids, Prednisolone, antibiotic with no food for 11 days. It worked! For the next 9 years, I learned the technique well. When the GI Tract gives me 'problems', eat bland, little portions and the purest foods possible. I was medication free and in remission most of the time.

It was around 1994 that I met and attended Elaine Gottschall's event in San Francisco about her book, "Breaking the vicious cycle intestinal health through diet". She made complete sense. What we put in is what we get out. I noticed I was eating and drinking tons of white sugar, ate and baked lots of yeast/flour products and on occasion, I would take vitamins. I was a typical Crohn's patient. How did this happen? How did I match the profile of malnourished and vitamin deficient? It was the vicious cycle she explained was not my fault but that our the food marketing companies.

I was diagnosed with a fistula from the ileum to the bladder wall. My GI offered Remicade, Prednisone and all the other experimental drugs of the time. I opted to change my diet completely.

I followed Elaine's Specific Carbohydrate Diet for 6 years. I was a fanatic. I was in remission with an occasional UTI, but then, the fistula was not closing. And I thought, is it possible to close a fistula simply by changing diet? i accepted the answer as a No. I did the best I could, not become a surgical statistic. Unfortunately, the disease had more control than I did. I held on to my intestines as long as I could until 2003.

I was ill and knew my surgery was inevitable. I lasted 20 years without any surgery. I was in the 20th percentile who survived without surgery. I felt like I won over the disease and yet, I was giving in and having the operation. In March 2003, I had a bowel resection and fistula repair or technically known as Ileal-right colostomy with takedown of ileovesicular fistula. It was bad. The surgeon was amazed I lasted as long as I did.

I picked the Chief of Surgery because my GI referred me. Unfortunately for me, the Surgeon did not do a very good job. In November 2004, a month after arriving in Florida to help my parents with their move, I was deathly sick. I was misdiagnosed at a famous hospital as having a sore back, but it was an abscess in the psoas muscle caused by the first surgery. So, I had an excellent surgeon in Miami who saved my life and performed a Exploratory laparoscopy, ressection of small bowel and colon, Ileotransverse colostomy. Drainage of large psoas
retroperitoneal abscess. Oy!

After 6 months of recovery, I felt normal again except there was a 17 inch scar from my pubic bone to the sternum. But I was alive and well and full of spirit and strong heart.

In May 2005, I felt something unusual going on when I had a bowel movement. It was sore. When I sat down it hurt. Well, as it turns out I had an anal fistula. I was operated on in Miami for a Crohns disease with perirectal ischiorectal abscess with fistula. I later fired the surgeon for improper follow-up after consulting with an expert at another teaching hospital.

Since then, I have been surgically free. The only med I took was the Lomotil, vitamins and watched my diet.

In July 2008, I was taken to the emergency room by a fellow employee because I was fatigued out and pain all over. They found nothing and I went home and slept for 14 hours. I was coming home from work at lunch to eat and falling asleep, sometimes hours later. Coincidentally, my employment contract finished, but I was left fatigued everyday. After months of follow-up with my Primary Care, he only found me to be low in Vit B-12. It was 140...OUCH! I convinced him to allow me to self administer B-12 at home, which he did. Then, I fired him. He was not knowledgeable enough about Crohn's and did not seem the bit excited to find the fatigue source. Even claiming that he did not believe in Chronic Fatigue Syndrome.

A friend gave me a referral to her Chiropractor, who in turn recommended his Primary Care. I was tested by my Primary Care and Infectious Disease docs, who found a slight B-12 and Vit D deficiencies along with osteoporosis and disc degeneration in the neck and lower back. Along the way, I had email trails from my Primary and GI. I was happy both gave me their emails to stay in touch. It works out well.

My latest CT Enterography and Colonoscopy, I waited 5 years from the last one, found 10 1mm to 10mm ulcers throughout the colon and ileum. I tried Asacol and was sick to my stomach. I did a bout of prednisone but had no real positive effects. It was not the miracle drug it used to be. I told my GI I would do anything even Remicade. He said that recent studies are showing that patients who have received Remicade for 10 years or so, don't respond anymore.

I was always afraid of Remicade and those drugs that 'played' with my immune system.

He suggested that maybe changing my diet again, maybe the best solution. So 4 weeks ago, I went on Elaine's diet again. I feel so much better. I take 50,000IU of Vit D once a week, 1mil of Vit B-12 intramuscular every two weeks, up to 6 tabs of lomotil a day, a tablespoon of Centrum Multivit liquid a day and Extra Strength Arthritis Tylenol. I am still a tad fatigued. I am going to buy DRibose which works well for Chronic Fatigue.

I was accepting SS disability as possible the only option and now, I maybe able to return to work. I'll keep you posted.

I learned a few things along the way about Crohn's disease, be an informaed consumer, eat the purest unprocessed foods, stay positive, remove the negativity in your life, reduce stress to a minimum and stay strong for you!

jeffrey

farm · 10-27-2009, 05:45 PM

Jer's Girl · 10-27-2009, 07:07 PM

Thank you for your post! It really helps to hear about what others with this disease have gone through and how they survive it. I was born in 1983, and was diagnosed when I was 14, but I am a newbie on here too and have gotten so much support and good advice already. Welcome!

imisspopcorn · 10-27-2009, 07:28 PM

Welcome to the forum. I am always amazed at people who can do the SCD diet. Well, you are amazing in my book

Thanks for sharing your story. I'm sure you will have a lot to contribute around here.

bjeffrey · 10-28-2009, 12:33 AM

Thank you!

Mazen · 11-02-2009, 08:32 AM

Hi jeffrey. It was nice resding your story, since I'm now in the same situation you were. I was diagnosed in 2000 when I was 26, and managed to keep my flares down with prednisone and antibiotics, and Pentasa as maintenance meds. Also a low residue non-processed foods diet most of the time. Unfortunately my last flare, for 3 months now, seems to be not quieting down. The MRI shows a fistula that isn't closing.

I'm seeing 2 GI's. One is recommending surgery, the other is recommending I try Remicade in the hope that it will close the fistula. I have a huge lump now in my lower right quadrant from the fistula pushing upon my intesinal muscles, and I'm finding it more and more difficult to stand and move. I don't know which choice to make. I'm trying SCD, but like you said I don't think it will help now!!!

Claire617 · 11-02-2009, 06:44 PM

Hmm after reading how you coped well by controlling your diet I kinda feel cheated by my consultant, because I've just been chucked from one drug to another and they always pretty much insisted it wouldn't matter what I ate it wouldn't help.
I was young when I was diagnosed so I didn't question my doctor, appointments were usually a conversation between my doctor and dad but this is definitely something to think about and atleast try, thanks

misscris · 11-02-2009, 07:42 PM

britt_l_andy · 11-07-2009, 12:22 AM

Lishyloo · 11-10-2009, 08:10 AM

Wow - you are amazing, and you keep on going!

Inspirational.

Lishyloo

dingbat · 11-10-2009, 08:19 AM

welcome to the forum, Jeffrey

CrohnsHobo · 11-10-2009, 04:12 PM

Welcome!

forum contributor · 11-10-2009, 09:38 PM

!

Peggy · 11-14-2009, 06:12 AM

Hi, and welcome to our club, I have had CD for 23 years, My hubby has had it 25 years, not anice illness, still we understand each other when unwell. Stay strong. Peggy

Pirate · 11-14-2009, 11:48 AM

Welcome Jeffery.
I too was lucky enough to have a GI that was against going right to surgery. I was put on Prednisone and soft diet and it worked for me. That was back in 1985 and that was how we dealt with it every time I had a flare-up. The prednisone did some damage like breaking down the calcium in my body to the point I had to have all my teeth pulled. I had beautiful teeth on the outside, but they started rotting from the inside. I had never had a cavity my whole life till than.
Now my GI has retired and my new GI wants me to jump into the big meds because of a minor flare. I am balking because I don't feel it is bad enough to warrant going to them yet.
Funny thing is when my new GI first seen me in the hospital she questioned me about my surgery and all I could do was look at her like I was dumb. I've never had surgery, but my old GI had put in my file that I had. She didn't want to believe me but my wife and my mom kept shaking thier heads saying that I had never had surgery. Must have been some new thing cause I never even got to have a scar.

10-27-2009, 03:57 PM	#1
bjeffrey New Member Join Date: Sep 2009 Posts: 12	Crohn's Disease since 1983 Hello GROUP! I recently found this Group online and thought it would benefit me and hopefully benefit others with our lifelong disease. I was diagnosed with Crohn's Disease in 1983 in Boston. I had lost 25 pounds and was in 'terrible' shape during my later college years. I was told by a surgeon and my new GI that I was not needing surgery. Instead of surgery they decided on something different, bowel rest. So for 12 days, I was living life hooked up to 3 IVS; TPN/Lipids, Prednisolone, antibiotic with no food for 11 days. It worked! For the next 9 years, I learned the technique well. When the GI Tract gives me 'problems', eat bland, little portions and the purest foods possible. I was medication free and in remission most of the time. It was around 1994 that I met and attended Elaine Gottschall's event in San Francisco about her book, "Breaking the vicious cycle intestinal health through diet". She made complete sense. What we put in is what we get out. I noticed I was eating and drinking tons of white sugar, ate and baked lots of yeast/flour products and on occasion, I would take vitamins. I was a typical Crohn's patient. How did this happen? How did I match the profile of malnourished and vitamin deficient? It was the vicious cycle she explained was not my fault but that our the food marketing companies. I was diagnosed with a fistula from the ileum to the bladder wall. My GI offered Remicade, Prednisone and all the other experimental drugs of the time. I opted to change my diet completely. I followed Elaine's Specific Carbohydrate Diet for 6 years. I was a fanatic. I was in remission with an occasional UTI, but then, the fistula was not closing. And I thought, is it possible to close a fistula simply by changing diet? i accepted the answer as a No. I did the best I could, not become a surgical statistic. Unfortunately, the disease had more control than I did. I held on to my intestines as long as I could until 2003. I was ill and knew my surgery was inevitable. I lasted 20 years without any surgery. I was in the 20th percentile who survived without surgery. I felt like I won over the disease and yet, I was giving in and having the operation. In March 2003, I had a bowel resection and fistula repair or technically known as Ileal-right colostomy with takedown of ileovesicular fistula. It was bad. The surgeon was amazed I lasted as long as I did. I picked the Chief of Surgery because my GI referred me. Unfortunately for me, the Surgeon did not do a very good job. In November 2004, a month after arriving in Florida to help my parents with their move, I was deathly sick. I was misdiagnosed at a famous hospital as having a sore back, but it was an abscess in the psoas muscle caused by the first surgery. So, I had an excellent surgeon in Miami who saved my life and performed a Exploratory laparoscopy, ressection of small bowel and colon, Ileotransverse colostomy. Drainage of large psoas retroperitoneal abscess. Oy! After 6 months of recovery, I felt normal again except there was a 17 inch scar from my pubic bone to the sternum. But I was alive and well and full of spirit and strong heart. In May 2005, I felt something unusual going on when I had a bowel movement. It was sore. When I sat down it hurt. Well, as it turns out I had an anal fistula. I was operated on in Miami for a Crohns disease with perirectal ischiorectal abscess with fistula. I later fired the surgeon for improper follow-up after consulting with an expert at another teaching hospital. Since then, I have been surgically free. The only med I took was the Lomotil, vitamins and watched my diet. In July 2008, I was taken to the emergency room by a fellow employee because I was fatigued out and pain all over. They found nothing and I went home and slept for 14 hours. I was coming home from work at lunch to eat and falling asleep, sometimes hours later. Coincidentally, my employment contract finished, but I was left fatigued everyday. After months of follow-up with my Primary Care, he only found me to be low in Vit B-12. It was 140...OUCH! I convinced him to allow me to self administer B-12 at home, which he did. Then, I fired him. He was not knowledgeable enough about Crohn's and did not seem the bit excited to find the fatigue source. Even claiming that he did not believe in Chronic Fatigue Syndrome. A friend gave me a referral to her Chiropractor, who in turn recommended his Primary Care. I was tested by my Primary Care and Infectious Disease docs, who found a slight B-12 and Vit D deficiencies along with osteoporosis and disc degeneration in the neck and lower back. Along the way, I had email trails from my Primary and GI. I was happy both gave me their emails to stay in touch. It works out well. My latest CT Enterography and Colonoscopy, I waited 5 years from the last one, found 10 1mm to 10mm ulcers throughout the colon and ileum. I tried Asacol and was sick to my stomach. I did a bout of prednisone but had no real positive effects. It was not the miracle drug it used to be. I told my GI I would do anything even Remicade. He said that recent studies are showing that patients who have received Remicade for 10 years or so, don't respond anymore. I was always afraid of Remicade and those drugs that 'played' with my immune system. He suggested that maybe changing my diet again, maybe the best solution. So 4 weeks ago, I went on Elaine's diet again. I feel so much better. I take 50,000IU of Vit D once a week, 1mil of Vit B-12 intramuscular every two weeks, up to 6 tabs of lomotil a day, a tablespoon of Centrum Multivit liquid a day and Extra Strength Arthritis Tylenol. I am still a tad fatigued. I am going to buy DRibose which works well for Chronic Fatigue. I was accepting SS disability as possible the only option and now, I maybe able to return to work. I'll keep you posted. I learned a few things along the way about Crohn's disease, be an informaed consumer, eat the purest unprocessed foods, stay positive, remove the negativity in your life, reduce stress to a minimum and stay strong for you! jeffrey

10-27-2009, 05:45 PM	#2
farm Captain Insaneo Join Date: Jun 2009 Location: NC Posts: 6,359	__________________ Have you sharted lately? (Just wait.)

10-27-2009, 07:28 PM	#4
imisspopcorn Punctuation Impaired Join Date: Aug 2009 Posts: 5,945	Welcome to the forum. I am always amazed at people who can do the SCD diet. Well, you are amazing in my book Thanks for sharing your story. I'm sure you will have a lot to contribute around here. __________________ ~~~~~~~~~* Instead of hiding in the darkness of a grey cloud, why not look for the silver lining?

11-02-2009, 06:44 PM	#7
Claire617 Senior Member Join Date: Nov 2009 Posts: 195	Hmm after reading how you coped well by controlling your diet I kinda feel cheated by my consultant, because I've just been chucked from one drug to another and they always pretty much insisted it wouldn't matter what I ate it wouldn't help. I was young when I was diagnosed so I didn't question my doctor, appointments were usually a conversation between my doctor and dad but this is definitely something to think about and atleast try, thanks __________________ Diagnosed Feb 2003 Surgery Apr 2010 Life is finally looking great again

11-02-2009, 07:42 PM	#8
misscris Senior Member Join Date: May 2009 Location: Washington Posts: 2,059	__________________ Crohns Diagnosis: March 2009 Resection and Abcess March 2009 W.C.C.....Charter member Facebook: www.facebook.com/misscris214 Myspace: www.myspace.com/misscris214

10-27-2009, 07:07 PM	#3
Jer's Girl Senior Member Join Date: Oct 2009 Posts: 283	Thank you for your post! It really helps to hear about what others with this disease have gone through and how they survive it. I was born in 1983, and was diagnosed when I was 14, but I am a newbie on here too and have gotten so much support and good advice already. Welcome!

10-28-2009, 12:33 AM	#5
bjeffrey New Member Join Date: Sep 2009 Posts: 12	Thank you!

11-02-2009, 08:32 AM	#6
Mazen Senior Member Join Date: Nov 2006 Location: Beirut, Lebanon Posts: 1,047	Hi jeffrey. It was nice resding your story, since I'm now in the same situation you were. I was diagnosed in 2000 when I was 26, and managed to keep my flares down with prednisone and antibiotics, and Pentasa as maintenance meds. Also a low residue non-processed foods diet most of the time. Unfortunately my last flare, for 3 months now, seems to be not quieting down. The MRI shows a fistula that isn't closing. I'm seeing 2 GI's. One is recommending surgery, the other is recommending I try Remicade in the hope that it will close the fistula. I have a huge lump now in my lower right quadrant from the fistula pushing upon my intesinal muscles, and I'm finding it more and more difficult to stand and move. I don't know which choice to make. I'm trying SCD, but like you said I don't think it will help now!!!

11-07-2009, 12:22 AM	#9
britt_l_andy Member Join Date: Aug 2008 Location: Cali Posts: 31

11-10-2009, 08:10 AM	#10
Lishyloo Senior Member Join Date: Jul 2009 Location: Hertfordshire, UK Posts: 617	Wow - you are amazing, and you keep on going! Inspirational. Lishyloo

11-10-2009, 08:19 AM	#11
dingbat Forum Administrator Join Date: Oct 2007 Location: Planet Confusion Posts: 4,006	welcome to the forum, Jeffrey

11-10-2009, 04:12 PM	#12
CrohnsHobo Senior Member Join Date: Nov 2009 Location: San Diego, CA Posts: 778	Welcome! __________________ http://www.facebook.com/people/Chris-Auger/652606298 Diagnosed in 1996 Currently on: Humira- 1 shot every other week Methotrexate- 1 shot a week Prednisone 5 MG/day Past Treatment: Remicade Asacol/Lialda 6 MP Prednisone Cipro/Flagyl

11-10-2009, 09:38 PM	#13
forum contributor Captain Obvious Join Date: Mar 2009 Posts: 4,687	!

11-14-2009, 06:12 AM	#14
Peggy Member Join Date: Aug 2009 Posts: 85	Hi, and welcome to our club, I have had CD for 23 years, My hubby has had it 25 years, not anice illness, still we understand each other when unwell. Stay strong. Peggy

11-14-2009, 11:48 AM	#15
Pirate Senior Member Join Date: Oct 2009 Location: Freeland, MI. Posts: 1,167	Welcome Jeffery. I too was lucky enough to have a GI that was against going right to surgery. I was put on Prednisone and soft diet and it worked for me. That was back in 1985 and that was how we dealt with it every time I had a flare-up. The prednisone did some damage like breaking down the calcium in my body to the point I had to have all my teeth pulled. I had beautiful teeth on the outside, but they started rotting from the inside. I had never had a cavity my whole life till than. Now my GI has retired and my new GI wants me to jump into the big meds because of a minor flare. I am balking because I don't feel it is bad enough to warrant going to them yet. Funny thing is when my new GI first seen me in the hospital she questioned me about my surgery and all I could do was look at her like I was dumb. I've never had surgery, but my old GI had put in my file that I had. She didn't want to believe me but my wife and my mom kept shaking thier heads saying that I had never had surgery. Must have been some new thing cause I never even got to have a scar. __________________ I'm the Captain of my own pirate ship. You'll find me on the POOP deck! Greg Yancer Diagnosed w/ CD Febuary 1986 No surgeries Current meds:REMICADE (CATS SCARE ME), Pentasa, Nexium, Probonics.