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Mehita, how much smaller bowel did your DS have removed? Did it include the IC valve how about cecum? From SBFT and CT scan I remember the doc saying that there was much disease beyond IC valve. I remember him saying accuracy of measurement can be distorted by imaging from one test to another but I can't for the life of me remember exact measurement. I remember Hubby asking the doc it would be less than 1-2 % of the small bowel.

I have a lot of questions for the surgeon, thanks everyone. And thinks for all the research MLP!
 
Haven't been around much lately but I try and pop on and catch up even if I don't get a chance to post, just wanted to let you know you and C are in my thoughts
 
When the terminal ileum is involved there is no choice but to remove the ileocaecal valve and caecum even if they are disease free.

Unfortunately the only way to successfully anastomose the smaller aperture of the small bowel with the large bowel is to take out the those two structures in-between.

The ileocaecal valve is quite small and the caecum is a large pouch, that is the problem with the anatomy of that area when resecting...

Colon-Diagram-New.jpg


Dusty. xxx
 
Dusty, it is his IC valve that is diseased, seen visually and biopsy, cecum looks good visually but histologically shows inflammation. So his surgery is to remove those anyway.

The Doc said the disease/fibrotic tissue goes only a bit further up past the the IC valve.
 
DS's resection was in the jejunum of the small intestine so we didn't have the IC valve issue. On film it looked like six inches were strictured, but during the operation they actually removed ten inches because they had to go far enough on each side to find healthy intestine to reconnect to.

Something else to ask about... will they remove his appendix? Some surgeons remove it no matter what, some leave it in. DS had his removed. They said if he complained of stomach pain in the future, they could immediately rule out appendicitis.
 
Caitlyn's appendix was removed during her resection as well. The doctors said exactly that once it is out you don't have to worry about it ever again.
 
Hi Clash, you have been on my mind for some time and can completely relate to the anxiety of simmering disease, lack of weight gain, and now impending surgery......it's mind boggling especially because there are no guarantees. I can tell you that even though N's surgery last year did not help 100%, it did help and we have not regretted it. I do think it is important to be clear on post op pain management....this was not handled very well in N's case and it took several hours after the surgery to get it under control. Also, they did not place a catheter in and his bladder shut down and he was miserable, so I highly recommend placing a cath before he wakes up! The rest of the recuperation went smoothly. He was in 5 days total and rested for another 2 weeks or so. They removed 12cm plus the IC valve and cecum.

In terms of weight, he gained about 14 pounds from his lowest (87lbs post surg!) and has stayed there. He still has issues with foods not sitting well especially if he eats larger portions, but he feels much better over all and can tolerate more foods and has more energy. The surgeon told us before the surgery that he did not believe removing the stricture would help all of his symptoms, but post surgically, after seeing the condition of the section removed, he said it absolutely was the right thing to do. I felt so much relief then because I was digging my heals the whole time!

Hang in there Clash, and please keep us posted. Sending warm thoughts.
 
We are back from the surgical consult and now are waiting on a phone for the schedule of the surgery.

The doc was great. He explained the surgery. It is close to 10 inches that will be removed. He will go through the entire small bowel to ensure there isn't disease lurking elsewhere but doesn't expect there to be. He explained three main risks with this surgery wise and gave their percentages. He explained why the GI thought surgery was necessary and he agreed and why. He explained recovery time.

Then he asked C if he had questions. C asked about epidurals and he explained that portion then C explained that he had a colonoscopy and afterward could not empty his bladder and had to have a catheter while he was awake, the doc said they would be inserting one while sedated.

And that was about the just of it. The risks somewhat worried C, even though the doc gave the percentages C was quick to say well what are the odds that I would have CD or now AS. Next, he worried about the six week recovery and not being able to lift in relation to his job.

As soon as I get the surgery date I'll call J's GI and schedule her oscopies. Btw, she is supposed to be dropping that sample off for the FC test and no bm yesterday and so far no bm today. Ughhh.
 
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awmom, thanks so much for your concern. It is such a daunting decision but I really think, like you, we are at that place where it needs to be done. We can only hope for good outcome.
 
Glad the apptmt went well. You seem comfortable with the surgeon and decision (at least, as 'comfortable' as possible in making the decision!). :ghug:

From all I've read on here, it seems the outcome from surgery is very often a positive one, so fingers crossed, C has great results!

And great for C to ask questions and even challenging the stats! ;) He must've learned from his mom!

(Will be away for a couple of weeks so, likely won't be able to respond to many updates but will be thinking of you and C and J.)

:ghug:
 
Glad the appointment went well. I wonder if seeing a psychologist maybe once or twice would help C.

Our rheumatologist says that the odds of having SpA when you have CD and vice versa are much higher than statistics report. I don't know if this might reassure C, but a fair number of people with SpA do NOT go to develop AS (you need to have a certain amount of damage on x-ray to meet the criteria for AS). People with SpA do not fuse, if that's what he's worried about.

Sending hugs:hug:
 
^^^ yeah that we were told similar for DS and JSpA( no AS yet).

Good luck with the surgery
Hope it brings good results quickly.
 
He just calls it AS because that is what the GI calls it and he says he forgets how to pronounce the long one. And C really doesn't differentiate between two because he has no idea what fusion feels like.:ycool:

As far as dealing with his dxes he's fine he was just trying to point out to the doc that statistics mean nothing when it happens. His only concern about the surgery is that he be asleep when the Cath goes in and the fact that he might not get to work for six weeks:(
 
Clash,
Glad to hear the appt went smoothly. Hopefully he will be up and around quickly. It is amazing how fast kids heal from these things. Keep us posted on the surgery dates. I will be adding him to my prayer list!
 
Thank you all for your support and knowledgeable advice! It means a lot.

I'm a lot better in the day about compartmentalizing everything but when I lay down my mind starts racing and all the fears rise to the top!
 
Hope you don't have to wait too long for surgery to be scheduled. I don't blame C for worrying about the catheter! Most unpleasant and rather embarrassing - something I dread ever needing. Must be a relief he will be asleep.
 
So they scheduled the surgery for Aug. 26th, next Tuesday. But they need C to come in for an HMP)or something) tomorrow. He's trying to get his work schedule covered for tomorrow so we can go if not then I guess it will be to call and reschedule the surgery for the following week.

Ugghh. Had they told us there would be this HMP or whatever it is before today this would not have been a problem.
 
That is quick! :ywow: Hope you can get the HMP sorted out and not delayed! I'll be thinking of you and C! :ghug:
 
Okay, so it's all sorted, HMP is tomorrow at 5:45 and we have to be at children's hospital next Tuesday at 10am. So what is HMP? The scheduler said it is where you go over the surgery but nurse said something about a physical?
 
I don't know what HMP stands for but in every case of planned major surgery you need to have a pre-op visit. For Matt it was about a 4 hour exercise and included bloods, ECG, chest X-Ray, admission details, physical (obs, weight, height and quite a few questions most of which weren't applicable to a young person), consult with the anaesthetist, the surgical registrar and then his case manager.

In my thoughts. :heart:

Dusty. xxx
 
I recall T's Gab's was 7 hours! But Gab's surgery was far more complicated, bless her.

Much of the paperwork involved with the physical, outside of relevant admission details, was to assess the risk of post op complications and the expected outcomes once the patient was discharged and if home follow up would need to be flagged. So very much for a much older and/or far more debilitated cohort.

It is a perfect opportunity to ask questions though and it was here that I raised the probability of a stoma for Matt as he didn't have the stoma therapist ticked on the form of people he needed to see that day. I only raised it as it had never really been ruled out from his previous admission.

Dusty. xxx
 
Ok so it is an HNP, history and physical. So, normally, like when my husband or I had our gall bladder removed we just had vitals taken and med. history, spoke with surgical team including anesthesiologist. I assume it will be the same here.

I'm also assuming if C decides on epidural then this is the appt to state that since it requires bringing in the pain managent team?

We will be leaving for the appt about 11 to give ourselves plenty of time in traffic.
 
All went well with the appt today. We are set to arrive at the children's hospital at 10am Tuesday. They said surgery usually starts two hours later.

The appt today was just an in-depth explanation of the surgery, a vitals check and medical history. C chose to go with the pain pump instead of the epidural. I made sure he was well informed of what both were and of what would be required of him after surgery before he made the decision.

We will go up the day before and stay in a hotel so C will do bowel prep there. C seems good at this point and the doc said he was really impressed with C's attitude toward the surgery.
 

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