Just diagnosed and looking for support - Help :(

[arose1980]

Hey fine folks,

Seems I just got the tap to join the club of 'my stomach may suck but she's the one i have' club.

41 years of age, male, no other healthy issues. I work out, eat right, etc. Diagnosed with IBS at 15 years of age, went through the process of learning trigger foods, how to manage it, the ups and downs, etc. For the past few years it was clean sailing. Then a month ago, my wife I cooked dumplings for the first time and we packed those babies with tons of the good stuff (Garlic, shallots, pork, etc.) as these foods really don't bother me and they taste great, right??

Well, a few days after, my stomach started to get real mad at me. The flareup lasted a month, all the greatest hits (diarrhea, abdominal pain, side pain, etc.). I had already scheduled a colonoscopy awhile ago after chadwick boseman died as i also have health anxiety, yay!.

Yesterday was my colonoscopy and I went in without being put under. Didn't feel great but better than going to sleep (yep, I'm weird). Doc looks at everything and then tells me I have the Crohns. Talk about a shot to the gut. My life flashed before my eyes (I have a daughter, trying for another too and my cousin died of IBD related issues at 70 years old last year). He put me on 4 grams of Mesalamine (1 gm 4x daily). Says I have mild inflammation and is hopeful if i follow his advise I can get and keep it under control.

My question to all of you fine folks is, am I guaranteed future surgery? A future of losing my colon or intestine? A future of colon cancer (doesn't run in my family)? These are the things that are in my head and I can see the fear in the eyes of my wife.

We both are foodies, love cooking and love to eat well. Chocolate is my weakness. Chips are my weakness. Ice cream is my weakness. Steak is my weakness. (Damn, I have a lot of weaknesses lol).

Dark chocolate NEVER gives me issues. Steak NEVER gives me issues. So do I need to still avoid these foods because they literally damage my insides even if they don't cause me pain, or issues that I can directly feel? I love fruit and same thing, NEVER gives me issues. Vegetables NEVER gives me issues (unless it's garlic and I eat a ton of it lol).

I'm willing to adjust whatever I have to if it means reducing the chances of surgery as that is a HUGE fear of mine.

Please help calm down my nerves and provide some much needed clarity to this new member of the club.

Thank you!

 

[Jo-mom]

Hi there, sorry about what you are going through. Did your doctor take a sample from inside your intestines during your colonoscopy. Normally to verify crohn's, this is done and results aren't known until lab work is done - it took a week or two to find out definitely if my son had crohn's, although you did have inflammation during your scope.

Diet doesn't necessarily trigger for some people - so the medication might be all you need to help with the inflammation. If you think you might have a trigger food though, you could try eliminating it from your diet and see if that helps - keep a journal of what you eat, etc., although you might be fine after the medication takes affect, if in fact it is the right medication for you.

Your situation doesn't seem that bad compared to many who have crohn's, and if you keep the inflammation at bay, you will be fine. Don't overthink all the bad stuff. My son has crohn's and is 22 now - was diagnosed at 19 along with arthritis. He likely had crohn's at age 15 but was undiagnosed. The point is, his medication is helping him and I don't think of all the possibilities in the future. He doesn't either. He is just happy to be feeling well right now. Diet doesn't seem to affect him so he hasn't really had to adjust it, although eating a well-rounded diet is alway recommended. His diagnosis was moderate to severe crohn's, as well as arthritis in both hips and Si joint.

Just enjoy life - if you think of everything that might go wrong, you really will miss out on today.

Good luck.

 

[scottsma]

Hello and welcome, but really sorry you have to be here.Please don't get into a panic about surgery.Yes,you MAY have to have it in the future,but you may have to have surgery for a number of things.I was dx'd 15yrs ago and I have managed OK.Yes,I have problems but it's become part of my life now.We all have different symptoms,there are so many,but lots of folk on the forum lead normal lives,have jobs,go to Uni and school and raise kids.So take one day at a time and don't expect the worst.It might never happen.Like you I like chocolate and icecream and those dumpling sounded delicious.....

 

[arose1980]

Hello and welcome, but really sorry you have to be here.Please don't get into a panic about surgery.Yes,you MAY have to have it in the future,but you may have to have surgery for a number of things.I was dx'd 15yrs ago and I have managed OK.Yes,I have problems but it's become part of my life now.We all have different symptoms,there are so many,but lots of folk on the forum lead normal lives,have jobs,go to Uni and school and raise kids.So take one day at a time and don't expect the worst.It might never happen.Like you I like chocolate and icecream and those dumpling sounded delicious.....

Thank you!! Do you still eat chocolate and ice cream?

 

[Scipio]

Welcome. One thing I have learned from having Crohn's and from reading all the other accounts here is that no two cases of Crohn's are exactly the same. Someone else's surgery experience or their foods they cannot tolerate may or may not be similar to yours.

I'm in my 60s and was diagnosed 10 years ago and had symptoms for at least 10 - 15 years prior to that. And I have not had bowel surgery and I have never found that my diet made much difference in my disease. My disease has responded to changes in medication but not to changes in diet. So I try to eat a more or less healthy diet, (but I proably eat more meat and sweets than a truly healthy diet would recommend) but in general I eat whatever I want, since adding or avoiding certain food just doesn't help me.

The medication that is currently keeping me in a solid remission is Stelara. I've been on it for over 3 years now, and I wish I had started taking it sooner. The key to avoiding surgery is staying in remission and avoiding inflammation in the gut.

So except for occasional arguments with my insurance company over approving and continuing to pay for the Stelara, I live a life that is more or less the same as before I came down with Crohn's. And I hope you are able to manage as well yourself. But like I said - no two cases are the same.

The key, IMO, is to find a GI that you like and trust - one who is apparently smart, is up on all the latest advances, and who listens to you, and then do what that doc tells you to do. There is no point in paying for a specialist's expertise if you are not going to follow it.

 

[my little penguin]

Same here
No surgery
My kiddo was dx at age 7
Gi issues since birth
He is now 17 and on Stelara for over three years
No issues
Mild inflammation in the gut
Finding a good Gi is key
Good luck

 

[scottsma]

Thank you!! Do you still eat chocolate and ice cream?

Unfortunately yes.I have to admit that my diet is limited.I've experimented for 15yrs with everything that's healthy but now I find that food doesn't interest me.I'm a "picker"which keeps me satisfied. Choc.and ice cream is my treat of the moment, but it could change.

 

[DougUte]

Welcome to the club! I had surgery right after diagnosis in 2010, but that does not mean that you will. It sounds to me that your case may not be headed to surgery. There are many IBD patients who have not had surgery. One thing I've learned about Crohn's Disease is all of us are different. You most likely would not have a colon completely removed for Crohn's. Now for Ulcerative Colitis that would be a possibility. The small intestine, I had 3.5 feet removed in my surgery and it was the best thing I could have had done. It was so inflammed that it was folded up like an accordian. I would have died if I did not have surgery. However, you cannot have the entire small intestine removed. It is the organ that absorbs all nutrients from the food. You cannot survive without it. I had to eliminate roughage from my diet because the intestine was so inflammed that a piece of corn could have blocked my digestive track. After surgery and the 6 weeks of recovery, I slowly added cooked vegetables back to my diet. I do not eat raw vegetables to this day because I'm afraid of getting a blockage, but cooking vegetables gives me most of the nutrients and I think they taste better anyway. I never quit the really good stuff for you, like Chocolate and Ice Cream. I've never had an issue with dairy.

I have been on biologic medications to control the inflammation. Humira for about 5 years. It stopped working as I developed anti bodies to Humira. Switched to Entyvio. My Crohn's is totally under control. I do not have any symptoms. The only thing in my life that I do for Crohn's now is a 30-45 minute I.V. infusion every 8 weeks. It seems like no big deal now. If I was you, I would do what I need to control the inflammation. Your G.I. should be able to direct you in that. Good Luck!

 

[arose1980]

Thanks everyone!!! Just started taking Pentasa yesterday and today and I'm having diarrhea even worse now smh lol. I had my first really normal bowel movement in sometime yesterday before Pentasa and another today before I took the pills, and now my stomach hurts even worse and the runs.

Ugh. Part of me wants to go off the meds to see if it really is contributing to worse stomach issues but that probably isn't a good idea?

 

[DougUte]

You should give Pentasa some time to work. Diarrhea is the symptom I have most often. If that becomes an ongoing issue talk to your GI about Loperamide or Lomotil.

 

[my little penguin]

Yeah that
Pentasa takes 30 days to work if it’s going to work
Sometimes after a scope your Gi tract get more upset -especially if you were flaring before the scope
So I wouldn’t blame the meds
What were you given to reduce the inflammation?
Pentasa is maintenance med
Meaning it maintains things and tries to prevent inflammation from returning
Steriods are used to get the inflammation down while Pentasa builds up in your system
Then steriods are stopped .

Some use Een (exclusive enteral nutrition-formula only ) instead of or in combination with steriods
This method is used mostly in kids
for 6-8 weeks

good luck

 

[arose1980]

Yeah that
Pentasa takes 30 days to work if it’s going to work
Sometimes after a scope your Gi tract get more upset -especially if you were flaring before the scope
So I wouldn’t blame the meds
What were you given to reduce the inflammation?
Pentasa is maintenance med
Meaning it maintains things and tries to prevent inflammation from returning
Steriods are used to get the inflammation down while Pentasa builds up in your system
Then steriods are stopped .

Some use Een (exclusive enteral nutrition-formula only ) instead of or in combination with steriods
This method is used mostly in kids
for 6-8 weeks

good luck

Thank you! The doctor said to try Pentasa for a month and if it doesn't help then he will put me on steroids.

 

[arose1980]

Another question (Apologies but they continue coming to me). I learned that my cousin died last year at age 62 of Crohns actually. Apparently he had his entire colon/intestine removed which caused a lot of damage and side effects leading to his passing. Based on what the doc said, I have it in the terminal ileum. How common is it for someone with inflammation based in the small intestine to have the entire small intestine removed?

Are people without a small intestine just screwed? No bag/j-pouch? I realize I'm getting way ahead of myself and I should focus on the here and now but I just find it very difficult. I'll probably end up going back to therapy (have health anxiety which makes this worse).

Thanks again everyone, so appreciative of you all.

 

[Scipio]

You can remove the entire large intestine and live but not the entire small intestine. The small intestine is where nearly all the nutrients are absorbed. I doubt that your cousin had his entire small intestne removed, because I don't think any doc would do that. It would be certain death.

 

[DougUte]

What Scipio said. Removal of the entire small intestine would cause death. Probably had the Large Intestine aka Colon, removed