Back from Boston and.....

[awmom]

Ok, I think it's official....I must have an anxiety disorder!!! Just got back for Boston Children's where I took N for. Second opinion about surgery to remove a stricture. The affected area is right at the TI. Basically the doc said. Just take it out take out the ileocecal valve. He went through his history, and then reviewed the barium swallow which was done when he was first diagnosed...said he would have started the remi even then, or even considered surgery at that point!! He asked me what I had against surgery. I said I didn't, unless it caused other problems, or if it didn't solve the problems he is having. So he said it wasn't Walmart so There were no guarantees(ha!)!! He did say he would have diarrhea for a while.

So, when I left there I was saying "ok, let's do the surgery!". And now I'm freaking out because I'm afraid of doing it an then having his problems continue, and adding more! His symptoms are not typical of an obstruction....ie, no nausea, vomiting, constipation, pain, None of that. He has lack of appetite, MANY foods bother him so he can never eat out with friends, etc.... His gi in Houston wants to do a ileocecal dilation to see if that helps. Even though it's a temporary fix, at least we would know it it is the narrowing of the bowel that is causin the problem...now I'm starting to feel more comfortable with that even though it means postponing what may be the inevitable, and his possibly feeling better. I wish I were an unthinking person sometimes!!

 

[Twosons]

I'm so sorry. I too just returned to Texas with my son after seeking a 2nd opinion at Cleveland Clinic. We went because we knew his disease was progressing and felt we needed a better idea of what to expect.

Our goal is to postpone surgery as long as possible. The GI feels like with Remicade we may hold it off a couple of years. I don't have any real input. Just wanted to wish you the very best for your son.

 

[kimmidwife]

Awmom,
I know how you feel we were terrified of surgery but I want you to know my daughter did well and it definitly did help somewhat. It was not 100% but she did improve. Lots of people on here their kids have had surgery. While it is a scarey experience and we all would like for our kids to avoid it just know it is not the worst thing in the world. Whatever you decide know we are here supporting you!

 

[DustyKat]

Hey awmom...:hug:

What does N think about the resection versus the dilatation?

Where is he at with his schooling and what does wish to do when he completes high school?

Okay, I can well see the attraction of the dilatation to see if it does indeed alleviate his appetite issues and it would likely be a something I would seriously consider but I would like to see it in the context of the above questions. The reason I say that is because regardless of the what the dilatation tells you it seems resection is going to be a necessity anyway and how it that best going to fit in with his future plans.

My two have had the same surgery that N would be facing and bile salt malabsorption diarrhoea can be problem, it is treatable though. Surgery for my children has been very successful thus far as it put them into immediate remission and they have stayed there. I can see though that it is a much tougher decision to consider and contemplate when symptoms don't appear to match the treatment the doctors are suggesting. It is the silent aspects of the disease that make it so hard to grasp, although even without the 'classic' physical in your face symptoms your son's quality of life is being quite significantly impacted.

Good luck hun, sending you both love and well wishes. :heart:

Dusty. xxx

 

[jmckinley]

Seems like there are never easy choices with this disease. We are forever second-guessing ourselves, backstepping, then kicking ourselves for not moving forward. If the dilation would give you more comfort that it is a stricture causing the problem, then I would try it. If it doesn't work, then you can do the surgery. I would want to be sure also considering his symptoms don't match up.

Hugs to you and I hope that making a decision brings you some peace of mind!

 

[awmom]

You guys know all the right things to say and questions to ask. Thank you for your support and words of encouragement. Dusty, to answer your questions, I think he is ready for a resection, if it helps him eat a larger variety of foods. Not so comfortable with the diarrhea that might come with it (would probably be ok if it is treatable). We actually have not spoken about the dilation much. He will finish high school in one and a half years and is planning on going to college. He knows it would be difficult to be on his own the way things are now.

I actually have no problem with the surgery if I can be pretty sure it will help him. It's that little bit of fear that that maybe there is something else at play that is causing the trouble. He has been on remicade for a year and the rest of his bowel looks fine. And he would stay on it post surgery.

Another thing is just last week he started having very loose bowels which is very unusual for him, and he can no longer drink peptamen because it upsets his stomach. Not sure what this is, but will keep track. I guess we will try to see his gi and rehash things. I'm not sure what questions I can ask him that will give me the answer I need to feel comfortable, but your sharing your children's positive experiences certainly takes the fear factor way down. Thanks guys. Twosons, I hope you find the right treatment for your son. I send you all the best.

 

[Patricia56]

Is he in remission?

How do you know? What meds is on if any?

I ask because my son had dilation of a stricture at the ileocecal valve done twice by a previous GI.

That GI insisted my son was in full remission. I didn't agree. Turned out I was right but it took several months for that to become clear.

Anyway when he was scoping my son for the first time after we had transferred my son to him, he did a dilation of a stricture at the ICV and injected the area with steroids.

He did it again about 4 months later when he scoped him again due to continuing sx.

I am under the impression that neither really worked for long.

However I believe that was because my son was not in remission and the stricture was not scar tissue so it makes sense that it would rebound despite this treatment.

2 months after the second dilatation SBF showed extensive stricturing in multiple locations in the small bowel and we transferred my son's care to his current GI.

At that point we upped his meds from 6-MP and Entocort to 6-MP, Entocort and Humira. Over the next year we weaned from Entocort, switched to MTX and he went into rock solid remission - the main evidence for that was the complete disappearance of constipation and perianal disease.

AFter about 2 1/2 years my son chose to stop the Humira and continued on MTX. He had a small flare late this spring and an MRE at that time showed that there was NO stricturing anywhere in his gut.

None. Including the stricture at the ICV.

So that is why I asked if he is in remission.

If you are sure it's scar tissue but you don't know if it's causing the problems then if it were me I would do the dilation first. You have nothing to lose and everything to gain. But I am certainly not a doc and I am basing that on our experiences.

Hope that helps.

 

[awmom]

Wow, that is some story! Could the doc not tell there was active inflammationwith the scope and biopsies? How did he assume he was in remission,mand what made the second gi think he wasnt. What were his peri anal symptoms? asking because N may have some. It is so good that you persevered and found a gi that worked so well for him. according to two gi's, after his las colonoscopy, There is no inflammation on either side of the stricture. He was on 6mp for a year, and then was switched to remicade and has been on that almost one year (he was on entocort and prednisone before that)I am assuming they did biopsies whereby I am assuming one can tell wether or not it is scar tissue. However, he is still having symptoms. He is not as fatigued anymore, has no mouth sores anymore and no more pain, but his appetite and food tolerances, and his weight have gotten worse.

So I am wondering can one be 100% sure that it is scar tissue? And can a colonoscopy by itself give you a complete picture of gut health (within the limits of its reach) I too am leaning, if it iis in fact scar tissue, to do the dilation first...like you said, it can't hurt. I am also left wondering if a switch in meds might be something to think about. Thanks Patricia, it is so helpful to hear your experience.

 

[Sascot]

Sorry, but I'm not much use on these issues, just wanted to send my best. Hope it all goes well, no matter which option you choose. Wish it wasn't so difficult to find out what's happening inside their bodies!

 

[Tesscorm]

Just sending hugs!!! These decisions are so difficult to make And it seems like we have to make them with lots of missing or questionable information... well, maybe, we think, no guarantees, etc., etc.! :ymad: You're doing a great job exploring all the options! Perhaps another apptmt with his GI to 'rehash' the info might alleviate some of your concerns??? :ghug:

 

[my little penguin]

Also get a copy of the pathology results .
They will tell you what the docs saw on the biopsy.
If you got a second opinion their pathology dept would have created a report as well .
This may or may not be the same .

 

[Patricia56]

Could the doc not tell there was active inflammationwith the scope and biopsies?

the first gi took biopsies of the colon which were normal as I recall. But he did NOT take biopsies of the ICV and he could not get past the stricture to take biopsies in the TI. Eventually we discovered that even if he had gotten into the TI the inflammation was further up into the proximal TI/distal jejunum and not accessible by scope.

How did he assume he was in remission

He asserted that Badger was in remission because his labs were relatively normal (mostly), he didn't have D (had never had D) and he was growing (hadn't grown even 1/2 CM in the 9 months we'd been with that GI and only 1 inch in the year before that when he was on EN).

What made the second gi think he wasnt?

The same reasons I felt he wasn't in remission. Badger wasn't growing , he had fissures that refused to heal, he continued to have some abnormal labs (ESR, platelets, albumin) and he was continuing to have severe constipation to the point of requiring hospital admission for cleanout despite 5-6 doses a day of laxatives, high fiber diet, etc. Plus the 2nd opinion doctor did a very thorough physical exam especially of the perianal area and expressed concern that if his treatment wasn't stepped up soon he was likely to develop more severe perianal disease (fistulas and/or abscesses).

What were his peri anal symptoms?

Painless fissures with swollen tissue around the edges, skin tags, bleeding at times although not by the time we are talking about.

his appetite and food tolerances, and his weight have gotten worse.

Has he been tested for or treated for SIBO (small intestine bacterial overgrowth)? As you can tell I think this is worth getting excited about and pushing the GI to explore as a possible explanation of his S&S (signs and symptoms) It could be caused or worsened by the stricture at the ICV. .

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2890937/

Read the part about clinical symptoms

Has he been tested for celiacs or food allergies? Have you considered a trial of EN or supplementing with this?

can a colonoscopy by itself give you a complete picture of gut health (within the limits of its reach)

A colonoscopy can only tell you about the colon. A very strict person would say that it only tells you about the 20+ spots where they take a biopsy because everything else is by "eyeball". Every GI ought to tell you that the colon can look fine and still have microscopic level inflammation with damage to the crypts and villi and other tiny structures that make the gut work. That's why we do labs and imaging studies and look at signs and sx including indirect measures like growth.

can one be 100% sure that it is scar tissue?

Probably not but I am not a doctor and that is a good question for one of them.

to do the dilation first...like you said, it can't hurt.

I think you should get him tested for SIBO and do a careful review with his current GI regarding the evidence for/against his being in remission before you decide what to do.

Glad to help.

 

[izzi'smom]

Just wanted to chime in- I have no experience regarding strictures, but have been to Boston Childrens. While I *love* them there, I feel that they are quick to recommend sx. Izz is nearly symptom free on Tacrolimus, but they STILL recommend surgery as Tacro can cause kidney failure. While I am not trying to trade one disease for another, there are kids on Tacro long term due to organ transplantation.
At any rate, best of luck with whatever you decide...I have a little one and am hoping to eek enough time out of tacro for her to become old enough to have a voice in the decision to have an ostomy. It's a tough decision for each of us regardless but I think the right decision can be different for each one of us. (((HUGS)))

 

[awmom]

Thanks to all, I know you all have also gone through your share of uncertainty and anxiety. You have given me also a lot of valuable information. I absolutely need to get the path reports, and I will most definitely ask about SIBO? It's interesting because I have always felt that part of his problem has to do with carb intake, and his stomach did best when he took flagyl for a few months. I have always had my doubts about his being in full remission, but his docs have said he is.....time to revisit the subject. Thanks again to all, your stories strengthen me and help me feel less like a maniacal person who is never quite comfortable with what is being offered. I really do not have anything against him having surgery, I just want to know that it is the the right treatment. It is good to hear from you that your instincts and educated decisions have come with good results for your kids.

 

[awmom]

We went ahead with the dilation of the IC valve last week, but the doctor said it was very stiff and fibrous and he couldn't stretch it much, so as you can imagine, ti did not make a difference. The path reports also indicated mild inflammation in an area of the colon....doc said possibly due to the fact that the other GI spread his remi appointments 10 weeks apart because of a low WBC count. So he is still saying surgery should help him feel better. I briefly mentioned the idea of bacterial overgrowth but he said while its a possibility, he had no indication of malabsorption (labs), no bloating, diarrhea.....I actually have a call in to his nurse to ask him again, if it might not be worthwhile looking into a little more. So, barring him wanting him to do SIBO testing, or a course of antibiotics i guess we are looking at surgery. I will also ask the surgeon (am supposed to call him this week) exactly what the path report said and if they took biopsies of the IC valve per se. how much they will take out, etc. Patricia, you had mentioned the possibility of his not being truly in remission, and I guess at this point, since there is still inflammation present, he isn't. Because he has already tried Entocort, Pentasa, Pred., 6mp, and REmi, his GI's have said they do not think he would respond to other meds (I had asked about the possibility of Humira). I am freaking out because I keep feeling like we are missing something, but I also feel like we need to do something soon because he is so thin. That's the other thing I'm worried about.....doing surgery when he is so-o-o-o thin and afraid he will lose more weight. I also am not sure what I need to ask the surgeon before we go through with this....any suggestions? Thanks for letting me vent all my worries.....it seems that is all I think about yet I feel completely ineffective in making decisions or in coming to firm conclusions that I can turn into action.

 

[my little penguin]

Can he drink EEN ?
Even for a week before the surgery to "beef" him up.
Have you tried peptamen jr or boost ?

 

[awmom]

Thanks MLP. He has been drinking Peptamen for several months, but he can rarely take in more than one a day and it ends up replacing a meal/snack. If he drinks it with his meals or at bedtime it doesn't sit well. We are trying now to drink a little with each meal instead of an entire container. The problem is that he will not do it at school and he is afraid to do it at breakfast on school days because he has a big breakfast (eggs, toast), so in the end it just ends up being one a day. He has tried drinking one at school several hours after lunch, but for some reason it either doesn't sit well there, or he feels he has to go to the bathroom afterwards. I have suggested an NG tube for night time on many an occasion and he will not consider it.

He did 4 weeks exclusively of boost several years ago. I think he can only fit so much at a time, and he always prefers the actual food since his appetite is fairly good, and he has always loved eating.

I also think he needs some "beefing" up prior to surgery....I just don't know how I will be able to do that. I really need to push the Peptamen somehoooo.

 

[Sascot]

I can understand your concerns about doing surgery while he is so thin. However, hopefully the surgery will allow him to do better and put on weight again, so the small dip in weight just after surgery will be made up and more once he has recovered. Good luck!

 

[CarolinAlaska]

How old is your son? I don't see why the formula doesn't sit well if he is able to eat. Maybe it is the flavor of the peptomen? Perhaps he'd do better with the Boost again if you are just using it to supplement his diet and help him gain?

 

[my little penguin]

Bribe bribe bribe at least until the surgery.
We don't leave important things up to DS.
If doc orders x amount of peptamen a day we treat it like any other med.
You either drink it orally or ng tube.
Not a punishment just a matter of fact .
He gets to chose which method but not how much.
DS drinks one after his cereal , one when he gets home and one at bed.
Even if he didn't feel well or not want to eat - formula is not something he doesn't get to take .
There is also resource breeze - has he tried those
Or slim fast , carnation instant breakfast etc...
Some like the pre mixed bottles some like the powder to mix
You could add butter under his peanut butter toast
Avacados to things
But shakes are easier on his system

 

[Mehita]

When you say it doesn't sit well, do you mean it makes him nauseous? Or does he just feel full?

I don't know if it helps any for perspective, but my son was 71 lbs prior to his resection, lost two pounds in the hospital the week after the resection and now 5 weeks post-op is up to 78 pounds. We're having a party when he hits 80 pounds

 

[awmom]

Thanks for your responses. Nico is 17. Actually, the peptamen per se doesn't make him feel sick, it's just that if he drinks it with a meal, it gives him D right away. So he can either have the drink, or a meal, but not both. For some reason, when he has taken it to school he always has to run to the bathroom. Today after school I gave him just a med snack and had him drink one. He will try drinking one before bed tonight and see how he does. I think trying boost is a good idea....have never heard of resource breeze but will look into it. MLP...I do need to be more firm!

Mehita, I am SO GLAD your son is doing well after his surgery! What a relief no? And like Sascot said, the dip in weght was short lived. Can I ask you Mehita why your son needed a resection? His symptoms and type, and how the surgery went?

Thanks all for your words....you keep me grounded.