Extreme anxiety for hypothetical future surgery

[Pinecone7288]

Hello everyone! I am new to this forum & was diagnosed with Chron’s Disease last month: (Nov 2021).

I have extreme mental health concerns with the future possibility of getting surgery one day. I read a Chron’s & UC book where they said about 70%-80% of people with Chron’s need surgery at some point in the future. I am 24 years old, I have hemophobia (irrational fear of blood) & the thought of being cut open just makes me terrified. Based on the guidelines on the surgery section I hope this is safe to post here, since it’s related to my mental stress/health.
Does anyone know if there are methods, diet requirements, or any personal choices that made you avoid surgery altogether? Pardon my naïveté with this question, as I am new to all of this, but can anyone help me to avoid surgery via advice?
I am also on the Specific Carbohydrate Diet.

Would appreciate any insight, wisdom, etc…

 

[wild_one353]

I had the same fear, I've used mainly diet and very few meds during the last 12 years, I use mostly diet and supps, it keeps it under control but difficult to follow. I do use some concepts of SCD diet too. I've never had any blockages or other issues that might require surgery. I mainly eat oats with soluble fiber, and just a little wheat (I rarely eat corn potatoes rice or beans this will mess you up), no red meat only chicken breast or salmon. for veggies broccoli is best, then cooked tomatoes with no seeds, no garlic or onions unless in a broth and remove the solids. I avoid every food additive especially emulsifiers, most supplements have then in there so its hard to find good supplement without them, I make my own mainly, I buy gelatin caps and fill them. eat a low calorie diet too, good fats etc avoid omega 6 like corn oil, eat canola oil. I do eat cheese but keep it to a minimum sat fat is not good really.

 

[my little penguin]

My son was dx at age 7
Now is 18 so 11 years and no surgery
Those percentages on surgery were before a lot of the current meds came out
My kiddo uses biologics (remicade ,humira, in the past ) and currently Stelara plus methotrexate
His colon is pink and healthy
No ulcers or strictures
That said there are never any guarantees
Please make sure to add a therapist to your care team
Being able to talk about things , the good ,bad and indifferent is very important for folks
Especially if there is chronic illness involved
Talking to a professional is a great idea

 

[Pinecone7288]

Thank you @wildbill_52280, & @my little penguin. These are some things for me to “chew” on. @wildbill_52280 I would love to know more on your supplement use (what kinds you use) {unless that’s personal/private}. I wouldn’t mind hearing any other helpful info, I’m at work right now( on break) so I can’t reply very lengthy.
@my little penguin: I’m glad your son is pushing along strong & healthy in the intestines/colon there! That gives me hope. When you said: “Those percentages on surgery were before a lot of the current meds came out” how can you be certain? I bought a book that was on its 3rd revision, makes me wonder if I bought a book that was updated in the 90’s?? This was the book I bought: Crohn's and Colitis: Understanding and Managing IBD https://www.amazon.com/dp/0778806197/ref=cm_sw_r_cp_api_glt_fabc_PR8TQ0ZTMSB5JGMDSE7V

i hope to learn more from this community!

 

[my little penguin]

Risk of surgery for inflammatory bowel diseases has decreased over time: a systematic review and meta-analysis of population-based studies
Alexandra D Frolkis et al. Gastroenterology.2013 Nov.
Show details


Abstract PubMed PMID
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Abstract
Background & aims: The inflammatory bowel diseases (IBDs) are chronic diseases that often require surgery. However, the risk of requirement of surgery over time has not been well characterized. We performed a systematic review and meta-analysis to establish the cumulative risk of surgery among patients with IBD and evaluated how this risk has changed over time.
Methods: We searched Medline, EMBASE, PubMed, and conference proceedings (2009-2012) on May 8, 2013, for terms related to IBD and intestinal surgery. Two reviewers screened 8338 unique citations to identify 486 for full-text review. The analysis included population-based studies published as articles (n = 26) and abstracts (n = 4) that reported risks of surgery at 1, 5, or 10 years after a diagnosis of Crohn's disease and/or ulcerative colitis. The trend in risk of surgery over time was analyzed by meta-regression using mixed-effect models.
Results: Based on all population-based studies, the risk of surgery 1, 5, and 10 years after diagnosis of Crohn's disease was 16.3% (95% confidence interval [CI], 11.4%-23.2%), 33.3% (95% CI, 26.3%-42.1%), and 46.6% (95% CI, 37.7%-57.7%), respectively. The risk of surgery 1, 5, and 10 years after diagnosis of ulcerative colitis was 4.9% (95% CI, 3.8%-6.3%), 11.6% (95% CI, 9.3%-14.4%), and 15.6% (95% CI, 12.5%-19.6%), respectively. The risk of surgery 1, 5, and 10 years after diagnosis of Crohn's disease and 1 and 10 years after diagnosis of ulcerative colitis has decreased significantly over the past 6 decades (P < .05).
Conclusions: Based on systematic review and meta-analysis of population-based studies, the risk of intestinal surgery among patients with IBD has decreased over the past 6 decades.
Keywords: CI; IBD; Inflammatory Bowel Diseases; Meta-analysis; Surgery; Systematic Review; TNF; confidence interval; inflammatory bowel disease; tumor necrosis factor.

From

Risk of surgery for inflammatory bowel diseases has decreased over time: a systematic review and meta-analysis of population-based studies - PubMed

Based on systematic review and meta-analysis of population-based studies, the risk of intestinal surgery among patients with IBD has decreased over the past 6 decades.

pubmed.ncbi.nlm.nih.gov

that was in 2013 states over 46%
Only 16% the first year

I am sure there is newer numbers
A lot meds my kiddo is on didn’t exist in 1990
1990 is a really old book

Even more didn’t exist when he was dx 11 years ago and were only fda approved in the past few years
Humira was a drug he took before it was approved for crohns in kids
It was approved for crohns in adults at the time
And approved for juvenile arthritis in kids

join the crohns and colitis foundation
They can provide you with local people to talk to

 

[my little penguin]

Homepage | Crohn's & Colitis Foundation

We are a non-profit, volunteer-fueled organization dedicated to finding cures for Crohn's disease and ulcerative colitis, and improving the quality of life of children and adults affected by these diseases.

www.crohnscolitisfoundation.org

 

[my little penguin]

ImproveCareNow

ImproveCareNow is a community restoring the wellbeing of all kids with Crohn's disease and ulcerative colitis.

www.improvecarenow.org

 

[Scipio]

Does anyone know if there are methods, diet requirements, or any personal choices that made you avoid surgery altogether? Pardon my naïveté with this question, as I am new to all of this, but can anyone help me to avoid surgery via advice?

The main thing you can do to avoid Crohn's surgery is to avoid damage to the gut by controlling the inflammation. Nearly all Crohn's - related surgery is done to either repair fistulas or other damage, remove strictures and other scar tissues, or to simply remove lengths of the bowel that are too shredded by repeated bouts of inflammation to be saved.

You can stop or at least reduce the damage by successfully getting the inflammation down - primarily with drugs and also to some extent with diet, but primarily drugs. It is due to the rise in recent decades of effective biologics that the rate of IBD surgery has gone down.

The key is to find a skilled GI you trust, preferably an IBD specialist, and do what that doctor tells you and take the drugs that doctors prescribes for you.

 

[Bufford]

Controlling stress can really help to improve overall health along with diet and supplements. Turmeric helped me greatly to reduce inflammation, and regular exercise like walking helps too. I avoid eating red meats, and favor poultry and fish. Reducing fiber intake will reduce the traffic going through the intestinal track, and chew foods well. Having a good GI doc that will work with you along with treatments can help. But I found with my system that I cannot tollerate medications very well and develop side effects that force me off the med. Following the diet can be difficult, but in the long run it has worked for me.

 

[Pinecone7288]

@Scipio thank you for your kind insight, I will be taking notes. @Bufford Thank you as well; this means the world to me to be able to reflect & learn. I am glad you both have figured ways out to manage your IBD & have learned info that is helpful to others.

 

[kiny]

Crohn's disease stories that end badly usually start like this....

"I can heal crohn's naturally, with:
-unpasteurized milk
-going vegan
-going paleo
-using herbs
-using diet 478974253 promising to cure crohn's
-I read this book...
-I saw this Youtube video..."

 

[kiny]

I bought a book that was on its 3rd revision, makes me wonder if I bought a book that was updated in the 90’s??

Up to date studies on crohn's are accessible to the public. The Lancet, Nature, and the BMJ have more info than any book could ever contain.

If you want a book to understand these studies, go to any public library and ask for a book about Élie Metchnikoff, innate immunity and phagocytosis.

 

[Pinecone7288]

Crohn's disease stories that end badly usually start like this....

"I can heal crohn's naturally, with:
-unpasteurized milk
-going vegan
-going paleo
-using herbs
-using diet 478974253 promising to cure crohn's
-I read this book...
-I saw this Youtube video..."

How can you be certain that certain things like Herbs can’t help with Chron’s remission? Don’t get me wrong; I just talked to a Nurse today about maintaining my medication (Mesalamine), but what Do you think is unimportant about herbal use?

 

[Pinecone7288]

Up to date studies on crohn's are accessible to the public. The Lancet, Nature, and the BMJ have more info than any book could ever contain.

If you want a book to understand these studies, go to any public library and ask for a book about Élie Metchnikoff, innate immunity and phagocytosis.

What do you mean by innate immunity? I could look into the book, sure, but in brief what does this immunity have to do with Chron’s - knowing that’s it’s an autoimmune disorder?

 

[wild_one353]

Patients with Crohn's disease commonly undergo surgery during their lifetime. Indications for surgical intervention include obstruction, intra-abdominal or perianal abscess, enterocutaneous fistulas, and complex perianal disease.

Efficacy and Complications of Surgery for Crohn's Disease

Patients with Crohn's disease commonly undergo surgery during their lifetime. Indications for surgical intervention include obstruction, intra-abdominal or perianal abscess, enterocutaneous fistulas, and complex perianal disease. As medical therapies ...

www.ncbi.nlm.nih.gov