Does Crohn's always require surgery? Can it just be okay or always severe and remission?

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Regular Member

Date Joined Aug 2006
Total Posts : 64
   Posted 2/3/2009 7:42 AM (GMT -7)   
So I don't know what to expect from Crohn's. Seems like reading the message board everyone needs surgery, or is severely ill. Now I know that might be because people usually only posts when they are unhappy or scared, but is it possible for Crohn's people to just have some bouts here and there but not that big a deal?
Or are these horror stories inevitable?

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 2/3/2009 7:47 AM (GMT -7)   
I have had Crohns for over 33 years. I have had many more good years than bad. Most of the folks here are usually sicker than most. The rest who are feeling well are just out there living their lives. Hope that helps.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Apr 2006
Total Posts : 686
   Posted 2/3/2009 7:10 PM (GMT -7)   
God no. I doubt I'll ever need surgery. I eat what I want and lead a normal life. I had all of my scopes re-done over the summer and from the results you would never know that I was sick.

Remicade and 6MP

Regular Member

Date Joined Mar 2008
Total Posts : 176
   Posted 2/3/2009 7:23 PM (GMT -7)   

Hi Brinycbri,

You ask a good question.  Everybody is different, and there are no absolutes.  For the most part, I generally have NO outward symptoms of Crohn's---hardly ever have diarrhea (usually have constipation, instead); and only have occasional cramping which may occur when I eat something with a lot of fiber.  When I go to the gastro and he presses on my lower abdominal area, I feel some tenderness---but on a daily basis it's generally not something I notice.

As for surgery, I've been fortunate so far to not need it.  The stats say that there is a high percentage that a person with Crohn's will need a surgery or two SOMETIME in their life.  But once again, there are no absolutes.

It also seems (& even according to research) that there may be several different TYPES of Crohn's; some of which may be more aggressive and symptomatic than others.

Even though I don't generally have OUTWARD symptoms, I do have the characteristic inward signs of Crohn's---Stricturing (narrowing) and inflammation (and probably some ulcerations) of the terminal ileum.  Just keep in mind that it's not the outward symptoms that do the damage; it's what's going on internally.  Therefore, I still need to be on medications to hopefully shove this into remission to delay the progression of the disease, at least temporarily. 

So PLEASE don't lose hope, and understand that everyone is different.  Typically when you read information on the Internet about Crohn's, it discusses the "typical" and sometimes worst case scenarios.  The articles simply generalize.

I wish you the best of luck, and hope that you're one of the fortunate ones to be in the category of a less aggressive type.


53 year old female;
Have had Crohn's of terminal ileum for over 8 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 2/3/2009 7:23 PM (GMT -7)   
They're not inevitable. Like Nanners said, most people are on here for the very reason that they are severely ill, while those that are less so are out doing their own thing.
It just depends on the person really :) Although, surgery is not always as scary as it sounds. It can really turn your life around.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 2/3/2009 7:37 PM (GMT -7)   
Yup, I concur, I have rarely been here over the past couple of years - managed it fine with diet alone. yeah

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 2/3/2009 7:43 PM (GMT -7)   
There are varying degrees of severity, mild, moderate and severe, although we can experiance all of them, many generally experiance one or even 2 types of severity...according to a reseacher (Dr. Kevin Rioux) in one of his findings he said that there have been genes that predict the behavior and severity over time for each patient, we all vary so much with symptoms too so don't be scared by the posts you read....many go into remission for decades and live very full lives.

My bum is broken....there's a big crack down the middle of it! LOL :)

Regular Member

Date Joined Jan 2009
Total Posts : 80
   Posted 2/3/2009 7:46 PM (GMT -7)   
When I was diagnosed I had a complete blockage. My doctor started remicade, prednisone,pentasa and antibiotics. He told me I may need surgery and then ended up I didn't. A couple months later I developed an infection and fistula. Doc put me on TPN for a month and talked about surgery again. I ended up not needing it again. A whole year has gone by, with some ups and downs and I think I'm doing pretty good! But I think if anything happens, I'm ready for it--this has made me a very strong person. And I have learned that every case is definitely different.
age 41,diagnosed with CD in 11/07, Rx Pentasa 4000mg and Remicade.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 2/4/2009 12:43 AM (GMT -7)   
Most people with severe crohns will have to have surgery in their lifetime, but that could be 20 years down the road.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 2/4/2009 9:29 AM (GMT -7)   
I have mild Crohn's. It was so mild that doctors said it was just IBS. Turns out that after 20+ years of this disease it did massive damage to my lower colon. I did have to have the last half of my colon removed but only because I wasn't being treated for Crohn's. As long as you stay on top of it and treat each emergency as it comes up, you might be able to avoid surgery.
Vicky / 49 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
Daughter (28) also has Crohn's since she was 12.
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor, Lisinopril

Regular Member

Date Joined Dec 2008
Total Posts : 63
   Posted 2/4/2009 11:28 AM (GMT -7)   
Not every one needs Surgery but most are, sorry to say that. I have had Crohn's only for one year and I have been very sick since then. Currently I'm @ the hospital for over a week and waiting to have surgery. Don't be scared. Crohn's Differ from one to one so take it easy and pray god that you are among the 20 % who doesn't require surgery, and your crohn's remain in remission or stays your life and watch for your health.

best of luck
Age: 28
Diagnosed with CD JAN, 08.
Meds: Prednisone(40mg), Pentasa (4mg), Hydrocodone, prilosec, Fish oil, Multivitamins untill(01/27)
Surgeries: Right now I'm at the Hospital (Hotel) waiting for my Abscesses to be drained then I will have a Laparoscopic Resection Surgery. I’m very excited.
New med's at the hospital: Flagyl (1500mg/Day), levaquin(500mg/Day),Hydrocortisone(300mg/Day) ,Lovenox(40mg/Day) for clotting, regular insulin, dilaudid as needed (1 mg/4 Hr's)
TPN with lipids at night.
Words are, of course, the most powerful drug used by mankind.

Regular Member

Date Joined Jul 2004
Total Posts : 422
   Posted 2/4/2009 11:53 AM (GMT -7)   
Whatever you do, at the very least stay on a maintenance Blossom said, to help delay the progression of the disease - because as of today it is not a curable disease.

My GI has told me he has patients he diagnosed with Crohn's and has NEVER had to see them again because they've never had any more problems. He has other patients who have severe Crohn's and have had multiple surgeries. I fit somewhere inbetween, so the severity of your disease does make a difference in whether surgery is on the horizon for you.

The BEST thing is to be smart by taking the recommended medication prescribed to you; lead a clean/healthy lifestyle and be positive in your thoughts. All of that can go a long way in keeping you feeling good.
Diagnosed in October, 2004 at age 32.
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date

Regular Member

Date Joined Mar 2004
Total Posts : 265
   Posted 2/4/2009 6:41 PM (GMT -7)   
Hi. I haven't checked this board in awhile because I've been in remission and busy chasing after my almost 3 year old. I was diagnosed pretty early on and it took me about a year to get my meds right. I took prevacid and asacol (and a vitamin). I took both meds during my pregnancy and the asacol during the first year and a half of nursing, but have been off of all meds (I still take a vitamin) for a year and 2 months now. I don't know how long my remission will last, but I am grateful for it.

Veteran Member

Date Joined Nov 2005
Total Posts : 1340
   Posted 2/5/2009 7:27 AM (GMT -7)   
I'm like Curly, I've been in remission for 5 years with maintenance meds with only a brief blip after the birth of my daughter. When I was diagnosed I was told surgery was inevitable because I have a sever stricture. I'm planning on proving that prediction wrong. So far so good.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 2/5/2009 1:18 PM (GMT -7)   
Most of the time I do quite well. I've had this for about 10 years now. I only take Asacol as far as Crohn's medications go. I also take Questran, which helps from having no gallbladder, and bile salt diarrhea that I have.
As far as surgery goes, I don't think everyone has to have it. I still have all my intestines, and I hope I can hang on to them. I have had my gallbladder out (it was quite inflammed), and I did have to have surgery to fix a rectal fistula. I consider those pretty minor surgeries compared to a resection though. However I was diagnosed when I had a major GI bleed, but that was before treatment, an ulcer got really bad in my TI. Even with those things, I do well most of the time. I've been in remission again for almost a year. I had a flare up last May, and before that I was in remission for 2 years.
It is an unpredictable disease, and no one knows how it's going to behave. The best advice I've ever gotten was on the anxiety board here. It's to live in the moment. We don't know the future, so it's best to not worry about it. Worrying doesn't do us any good, and with this disease stress and worry can make our symptoms even worse.
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Lexapro.

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