Newbie needs advice. 1 Doc says I have Crohn's 1 Doc says No I don't. Any advice?

[Mercy Foundme]

Hello. Brand new. Looking for some guidance. Over past 15 years, have had a handful of "attacks" as I call them. Feels like labor pain but in my stomach. I am bed ridden and have to breath like I am in labor because of the pain. One attack led to an appendectomy and the final doc report said the ileum looked effected and the appendix was okay. Recently landed in hospital for a week because of the pain. They gave me pain meds and antibiotics. I was back to normal a week later. Colonoscopy and the Follow through Xrays show stricter and bum terminal ileum. Other than the few attacks. I have no other symptoms. I feel bad saying that after reading all the misery other members have endured. One doc said I have Crohns and wants me to start the TNF meds ASAP. She says it will heal the stricter and I am hurting myself by not starting the meds now. I can't imagine taking such a strong med when I have not symptoms. The other doc says I don't have Crohn's and just need to get my terminal ileum cut out. I think, why? Why can't I just leave it all if I don't have any symptoms? None of this is making sense. I am going to go for a third opinion but in the meanwhile, thought I would ask you good folks for guidance. I am overweight. And oh, that follow through test, when I drank the barium, they said it should take a long time, but it only took me 20 mins. It went through my system that fast. I am in my 40s.

 

[DJW]

Hi and welcome.

I'm sorry you're going through this.
Have you had biopsies done to check for Crohn's?
Did each doctor say why they came to their conclusion?

Biological meds are heavey duty meds. If it is Crohn's it's important to get it under control quickly befroe the damage is done. Crohn's can simmer quietly with no symptoms while causing damage.
Strictures are also very common from Crohn's.

Does the doctor who doesn't think it's Crohn's have any thoughts on what caused the stricture?

Are both doctors gastroenterologists?

Would a third opinion be an option?

You are faced with some tough decisions.
Sending you my support.

 

[ronroush7]

Welcome. Do you know what TNF they are thinking about? Maybe a third opinion may be good. Best yo you and Happy Thanksgiving.

 

[David]

Were biopsies taken during the colonoscopy? Are both of these doctor's GIs?

 

[Robrich]

Yes really before you follow either course it is imperative you get a proper diagnosis. The colonoscopy and biopsy is the best. Fecal calprotecttin is a also a good indicator.
If you don't know for sure what the cause is best to go slow in treating the unknown.
A bottom up approach with steroids, AZA is probably a better way to start.
Diet and lifestyle changes are indicated regardless of the diagnosis.
Surgery is a very drastic and irreversible treatment with or without having Crohns.
A stricture though is likely Crohns and may eventually need surgery but not before drug options have been fully tried
Did they rule out diverticular disease and or other possibilities?
Good Luck

 

[Mercy Foundme]

Thanks you everyone for reading my post and commenting. It is all so helpful to me. I appreciate it so much. Here is some more info to answer your questions:

I had biopsy and the results said they were compatible with Crohn's. The two docs are GIs. They couldn't give me a solid answer. THey said I was not a typical case and can't answer why or how I have it.

If it is Crohn's, why is starting the meds important? If the illium is already bad and I already have a stricter, what will happen if I do nothing? Can the meds really heal the stricter? I read if I cut it out, I will just get another one.

She said the TNF is injected. I would have to inject myself at home. She said i wouldn't need steroids right now.

THey have not ruled out anything else. That is why I am so baffled. To have two docs give two totally different opinions.

If I get the illuim valve cut out, how does that effect your bowel movements?

Why when I drank the barium, did it go so quickly through my system? Is that a clue as to what is wrong? It made through in 20 mins. I asked the female doc and she told me she did'nt know. I lost confidence with her.

I am learning from what I a reading on this site. I didn't know the strange and loud noise my stomach makes is Crohn's.

For sure I will get a 3rd opinion. Thanks again for the warm welcome and sage advice. Very helpful to me. So kind of you folks. Even though you are in your own struggle and own pain, you answer all my questions and help other people. So kind.

 

[my little penguin]

Ok my simple explanation
If you have a cut on your arm your body heals it by making the area inflame the tissue first so it get red then it forms a scab so the skin underneath heals

In Crohn's your body thinks there are "cuts " it has to heal over and over again
The constant cycle of inflammation caused scar tissue making the normally flexible intestine think garden hose turn ridged in the area of the stricture ( clogged pipe )
The opening is much more narrow so the intestine works harder to push things through the stricture.
It can result in a obstruction ( blockage ) or perforation.

The meds injected at home would be humira .
The rest of your intestine is probably going through the inflammation scarring cycle as well but hasn't yet formed a stricture yet.
Your large bowel or colon can be completely removed
But your small intestine is needed to survive so without meds the potential for more damage occurring increases

Removing the stricture could prevent some complications but won't stop the inflammation cycle of crohns only meds do that

The med Humira can only fix the inflammation part of a stricture if you have any but it can't fix the scar tissue

It's hard when you can't see the damage
But Google colon or small resection images

 

[ronroush7]

I had a resection five years ago. One of my doctor's associates said the disease will eventually return but I think I would have been a lot worse if they had done nothing. About the barium going through so quickly, right before the resection, the barium was taking an awful long time to go through. This was because I had a blockage.

 

[Mercy Foundme]

Ok. Penguin. That was awesome. Why couldn't my doc say that? That makes sense. A lot of sense. Thanks. Ron so sorry you had to had to go through that. Glad it brought some relief though.

 

[David]

Ok. Penguin. That was awesome. Why couldn't my doc say that? That makes sense. A lot of sense. Thanks. Ron so sorry you had to had to go through that. Glad it brought some relief though.

Because MLP is more educated about Crohn's than many doctors