Clean scopes?

[Mallory's Mum]

I'm sure this sounds silly, but what is the definition of clean scopes? No inflammation or sores?

I'm wondering as we just got my daughters done today. They (GI) were insistent going in that they expected clean scopes since her numbers were decent. However, going in on my end, unexpected otherwise. She's has acute pain around the navel, weightloss, low grade fevers, major joint issues that only get relief for about 2 weeks from remicade. Remicade not helping belly pain. They kept telling us IBS.

Everything was clear of ulcers from mouth to bottom minus the TI. It has a HUGE ulcer. Like an ulcer on an ulcer on an ulcer. Obviously, we don't have biopsy results yet. We knew going in that we are switching to Humira but the outcome of the scopes were to decide if she might need her TI out. Just wondering if this huge ulcer could contribute to these issues. How bad are the ulcers to the gut? Also, difference between abscess and ulcer. Thanks. I would have asked this to our doc but it was an associate that did it. There wasn't that comfort level and the same level of communication that I'm used to. Mthanks in advance. Kay

 

[Dunbar]

My understanding is that a clean scope shows no obvious signs of inflammation, sores, polyps, cancer etc.
That ulcer sounds extremely painful. I would think it would contribute to her symptoms, pain is an indication of something being out of whack. However, the fevers, joint issues and weightloss would suggest infection of some sort but as I am not a doctor I cannot say with any certainty that that is the case
An ulcer is an open wound, easily seen whereas an abscess is a enclosed wound that is felt rather that seen.
Here's to hoping you guys see some resolution rapidly and she feels better soon. I wish you well

 

[LindaS]

A clean scope would show no sign of disease. Not to scare you, but "good numbers" on a blood test don't mean there is no disease.

 

[Catherine]

Sarah scope was not considered clear due some red spots the size of pin heads. Further testing of these showed, one only was positive for Crohn's. Now looking at increasing aza.

I would say your daughter scope is not clear.

My daughter currently has no Crohn's symptoms.

 

[Mallory's Mum]

Thanks everyone. I thought it didn't sound clean and I figured the experts here would now. Sadly, I was hoping scopes would show something to validate all of the issues. I was hoping that the major joint issues were cuz of crohns instead of something separate. Then maybe when we fix crohns (even if for a while) it will help everything instead of having 2 issues...if that make sense. Course, this still doesn't mean the latter but we will see.

Hard when your regular doc doesn't do the scope because the other doctor doesn't know the case.

Do does humira do exactly the same thing ad remicade since they are similar? So if remicade sit working, still high chances of humira working? Also on 6mp but I don't think they are wanting to switch that to methotrexate unless crohns was anywhere else than TI? The waiting game for direction is so hard because we had a plan of action after her last scope because her doc did the scopes. Thanks a million. Kay

 

[723crossroads]

Hope you get some valid answers. Don't be afraid to call your Dr. and ask him his opinion. Seeing an associate for something like this really isn't what you want, but sometimes it's unavoidable. I try to wait till I can get an appt. with my Dr. unless emergency.

 

[my little penguin]

humira has a decent chance of working but the highest chance is for folks who have never had a tnf-blocker.
mtx has a better chance at resolving joint pain when combo with humira or remicade ( lots of history for JRA patients)

plus a scope can look visually clean on a macroscopic level ( your dd was not) and still not be clean on a microscopic level ( aka biopsies).

Good luck on the results
hope you get them soon.

 

[Twiggy930]

Hey Mallory's Mum,

I was wondering how the scope went. Do you feel like saying a big fat "I TOLD YOU SO" to the docs who thought the scope would be clean? While I am sorry to hear that the scope found a large ulcer I hope that it gives the docs something concrete to fix and makes them stop blaming ongoing pain on IBS. It is so infuriating to be told that the pain is IBS when there are all the other issues going on.

:hang:

 

[Mallory's Mum]

Little Penguin...you are always a wealth of drug knowledge. Thank you. We have discussed methotrexate as our rheumy has been requesting it for months now. The GI doc wanted to stay on 6mp because is supposably working. Guess they might figure differently.

Twiggy...I'm thinking of doing the "I told you so" jig next time I'm in the office. The sad thing is this pain has been ever present since November. They actually did a flexsigmoidoscopy in December trying to prove us wrong. If only they went further. The hubby said that he will never just let them waste a clean out for anything less than a colonoscopy. Hate to think she has been suffering since then. Currently we are on every 4 weeks remicade with no relief. Looking forward to hear their game plan next week. Glad I put my foot down and did not let them medicate her for IBS!

 

[araceli]

My son's scope looked clean but biopsies showed a lot of things. Blood tests don't show anything. I am going to write something that a read. Some patients with Spa have a form of sub-clinical CD in wish locomor inflammation is the only clinical expresssion. 6% of patients with Spa did not present any signs of CD but demostrate gut inflammation on biopsy. They developed Cd 2 to 9 years later. Ileal & colonic mucosal ulceration in patients with Spa can be detected in 44% versus 6% with other inflammatory Arthritis, Diagnosis was early CD. I don't know exactly your kid's story but from what I have read in this and another posts, is very similar to my son's.

 

[Mallory's Mum]

Thanks again everyone. Her biopsy results came in showing chronic ileitis; severe inflammation and ulceration. We are waiting to find out when we will meet with a surgeon for a recection. Hear some of the details before signing on the dotted line. I'll keep you posted. First she is headed for camp oasis and a much needed family vacation.

 

[DustyKat]

Thanks for the update mum. :ghug:

I am so sorry to hear about the biopsy results. But I hope she has a blast at camp! From what I read on the forum she will have a brilliant time!

My two have had resections, so any questions when the time comes please don't hesitate to ask!

Happy vacationing. :heart:

Dusty. xxx

 

[Mallory's Mum]

Thanks Dusty! I was just about to ask some questions about recovery etc:

I've seen your posts on phylum for the diarrhea after surgery. Where do you find that?

I've read a bunch of adults and their thoughts on recovery. What are your thoughts more related to pediatric? Time out of school etc. We go to the surgery consult on Friday so we should get a time frame of when we will have it. She goes back to school on August 20 so I will need to get tutors etc in line if we are out a bit.

What constitutes the need on a ileocecal resection to get a bag? He told us that he would anticipate a full hook up (LOL) but since she has chronic active ileitis. I'm sure that's just fancy words for active inflammation in the TI.

I'm sure I'll have more questions once I'm done with the consult. Thanks again for all of you worded guidance! Kay

 

[DustyKat]

Hey Kay,

:eek2: Sorry for the late reply!

I just get it in the supermarket and it usually comes packaged something like this:

Sarah's surgery was an emergency and she was in very poor condition. Matt's was planned and although he had lost considerable weight and had complications he was in a much better position than Sarah. That said they both went back to school three weeks post op.

I would say Sarah was functioning on about 80% by 8 weeks post op and it took about another 3 months to get to 100% but again she was not in a good place pre op.

Matt on the other hand recovered considerably quicker. I found the start of week 4 was the real turn around for him because it was at this point he was able to move freely without pain and twinges. Not that his pain was bad, just inconvenient when he was getting up out of chairs or from lying to standing, that sort of thing. He started driving again and training for soccer at 5 weeks.

Both of my children had open resections.

A temporary stoma is always a possibility simply because they don't really know what they will find until they get in there BUT chronic inflammation is far better than acute because it means that the area of inflammation is usually self limiting. A good example is Matt...

During his first admission to RPA hospital he was found to have a fistula and abscess. He was very sick and the flare he was experiencing was a tad out of control. Imaging suggested that his inflammation in the small bowel was quite extensive. The aim was to get his inflammation under control and in doing so bring the affected area back to original diagnosed area of 100mm. Matt did respond to meds so we were able to hold out for 3 months to ensure that the inflammation did indeed go from acute to chronic. As a result a stoma was not required.

However had he not responded to meds during that hospital stay they would have had no choice but to operate and therein lay the problem. If you have no choice but to operate when inflammation is extensive and active then a temporary stoma is the best option and it is done for two reasons that go hand in hand...a healthy anastomosis and the least possible amount of bowel removed. When you join (anastomose) the bowel you need to ensure that the margins are free of disease or it is highly likely the join will break down. Since CD tends to skip you could have 10cm of affected bowel followed 3 cms of healthy bowel, then another 5cms of affected bowel and so on. So as you can see it isn't viable to resect multiple small segments and you can't anyway because of the disease free margins required. So in Matt's case, should he have needed surgery he most likely would have ended up with a temporary stoma to preserve bowel and allow healing to take place before taking it down and joining him back up again.

It sounds as if your daughter has time on her side and is in a very controlled situation. Sure, the surgeon can never be 100% sure of what he will find until he looks with his own eyes but from what you have said I would be significantly more surprised if she did end up with a temp stoma than if she didn't.

Good luck with the appointment!

Dusty. xxx