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Back after our Surgery

First I would like to say, Mayo in Minnesota is fantastic.
Brian had a loop ileostomy done. The surgeon took time to go inch by inch and look at every section of bowel. He went in thinking the terminal ileum would need to be taken out. But to the surprise of us all he felt it didn't need to come out. So we just did the ileostomy. Brian recovered really well. I think that's part that he's pretty tough, but also that the surgeon is good. The evening after the surgery he was eating goldfish!! First food (besides an occasional broth) in over 14 weeks!! The next day he had breakfast, lunch and dinner. (Small portions tho!) But before surgery he was having blood and cramps from broth. After.... No Pain at all! Brian is so happy. Right after surgery I could tell he was a little sad looking down at his stoma.... but within a day he was fine with it. He has taken ownership and he empties it himself. They had him changing the appliance all by himself. They cut his TPN way down. We came home with that for a week for the food transition to go smoothly.
Yesterday we got the picc line out!!!!

Plan is to stay on the same medicines and scope in 6 months. We will be doing that in Minnesota also.


Super Moderator
So good to hear from you Kathy! And absolutely brilliant to hear that all went for Brian, what a champion! :thumleft::thumleft::thumleft:

I SO hope the stoma works wonders for his lower bowel, bless him. :ghug:

Now I have to ask…what is a goldfish?! I assume he hasn’t raided the fish tank in the hospital foyer! :lol:

In awe of you lad.

Dusty. xxx


Super Moderator
Thanks for that Mehita. I can now go to bed and sleep easy knowing that Brian isn’t condemning the hospital goldfish to the fate of Wanda. :ybiggrin:
Great Update! Glad things are improving. Jack just finished off an entire bag of goldfish last night, he has not had them in ages but we were at the store after baseball and he asked if he could get some. He started eating them in the store and by the time we got to check out 1/2 the bag was gone. It's so great to see and hear that these boys are eating!
:ymad: Why did you have to tell her Mehita:ymad:
We could have had such fun convincing Dusty that Americans eat "gold fish":rof:.

:hug:I'm so glad Brain is doing better.
I was just thinking of trying to find a way to get Grace back to Mayo. Hugs


Staff member
So glad to hear that Brian is feeling better! I hope you guys get a LONG break from all of this:ghug:


Sadly only found this out after putting the turtles into pond with the goldfish. The turtles seen to be doing fine. Only fast goldfish left!!! Which breed!!!
Brian's appetite just continues to grow. He said its the first time he can eat and has no pain. He's hungry like a 14 yr old boy is supposed to be. This part makes the ileostomy easier for him to deal with. He actually doesn't seem to care much at all. I think he just knows this is where he was at with his crohns. Not really any other choice. I keep wondering what summer will be like. I've googled all kinds of things 'to swim in'. Brian just simply said, "I'll wear a swim shirt...I should anyways because I'm on Mtx and need to be careful of the sun". Boys...things so simple I guess!


Kathy - The "in" thing here is to wear under armour or nike compression shorts under a looser board short. I'm sure those compression shorts would hold it for him if you don't want to spring for a Speedo! I'm so glad he's doing well. :ghug:



Super Moderator
What a brilliant update Kathy! It must fair make your heart sing to see him with a normal 14 y/o appetite and accepting of what needed to be done. He surely is an amazing young man. :):):)

Wishing you both all the luck in the world that the stoma does the trick!

Onwards and Upwards Brian!

Dusty. xxx
I hate to post this because I don't want to scare people. But I am because I want to stress how important regular labs are. And staying on top of things... and admitting our children when we need to is so important.
My son's aunt that was in her 30's also had IBD. She had Ulcerative Colitis. She had struggled like crazy. Did the 3 part surgery a few years back. Her final surgery to reconnect and form a j pouch was about a year ago. She could never get a hold of her diarrhea and she seemed to get worse. She also had c diff several times, and although she tested negative recently...she was worried she had a false negative. She also had pouchitis. Friday she collapsed and she stopped breathing. Her heart was fibrulating and they got it back but she went too long without oxygen and she had a lot of brain damage. She died on Monday when they took her off life support. It turns out that upon admission her potassium level was dangerously low. They think that is what caused her heart to get out of rhythm. And the levels got low due to all the extreme diarrhea. She also had a WBC of over 30... so she was pretty sick. So devastating. No one realized she was this sick. And I believe she didn't realize either. She lived with so many symptoms and I think she got used to feeling awful.
In lieu of flowers her parents asked for donations to CCFA. I thought that was sweet of them and That's good for all our kids too! CCFA Please find a CURE!!
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Super Moderator
Oh Kathy, I am so, so sorry to hear this. What a heartbreaking time for you and your entire family. My heart goes out to you all. :ghug:

You aren’t scaring anyone hun, these stories need to be told so people realise that what they are dealing with. Thank you for posting. :ghug:

In my thoughts and prayers. :heart:

Dusty. xxx
So sorry to hear about your loss. This disease is so complicated and hard to get a total grasp on. Sending prayers your way.