I HATE Crohn's

We're back.

I hate Crohn's disease.

DS is vomiting again. He just dozed off, but he's dry heaving every 30 minutes or so. I just sit here and watch for the signs that he's about to vomit again and try to wake him up before it happens. I just want to cry. And not to sound selfish, but I'm soooo tired.

To recap... dx at age 8, no problems until age 11. Then the vomiting spells started. MRE showed a 6 inch stricture in the middle intestine area. No problems anywhere else. Two rounds of prednisone about 6 months apart in one year and started Pentasa, which I don't think is doing anything for him.

Now we have an MRE scheduled for later this month, though after today, I think it will be moved up to this week. Gastro wants to see if anything has changed with the stricture, which I agree is a good idea. Lukas is protesting, but again, after today, maybe he'll change his tune.

Gastro is really pushing for 6MP, which I am still questioning. That whole deal with teen boys and 6MP still scares me. Plus his TMPT was in the intermediate level. If 6MP fails, then what? Aren't biologics bad for stricture scarring?

I've asked about surgery, but our doctor isn't in favor of it. He said he'd provide a referral to a surgeon if we really wanted one. Do we want one?? I don't know. He hasn't given a reason for not being in favor of it.

... and he just vomited again. I'm giving him one more hour before we head off to the ER. He's never had pain before with these spells, but this time he says there is some. About a 2 on a scale of 1 to 10.

Just needed to vent.

I don't have experience with repeated vomiting or strictures but wanted to send hugs and support your way. I'm sure someone will be by shortly that can give you their experience with your questions about biologics and strictures as well as surgery. I hope you both get some relief soon!

Does he have fevers?
Of course if he's like Grace and not wanting docs around he'll say no to anything!
Sorry no real answers. Hugs to you both.

No fever.

My dear Mehita, hope you are able to get some rest. I do pray Lukas finds relief. Have they given him anything for his nausea and vomiting?? Weight dependant, there are a few options for him. Is he taking little sips ( about 15 minutes after vomiting) of warm fluids to stay hydrated? Electrolyte solutions/drinks are best but watered down apple juice or warm ginger water will help too. The added ginger is a natural way ( as is peppermint) to calm nausea. Room temp is better than cold as it tends not to upset the stomach more. Thoughts and prayers go out to you. - hugs-

Good on no fever.
Has it settled at all?

Thanks, achallova. He has a Zofran about 2 1/2 hours ago. The dr said not to give him any more until the 4 hour mark. I can't get him to drink anything right now. He's vomiting every 20 minutes or so and dozes off in between. He's so tired.

It doesn't look like it's settling, Farmwife. I actually think it's getting worse, but it's hard to get answers out of him because he keeps falling asleep. The ER gastro only seemed half interested when I called. I don't want to be given fluids and sent home... then again, I'm not sure I'm up for a night of lots of tests either.

My motto is- better safe than sorry. Depending on how long he's been at it, I'd take him in just for nothing else but piece of mind. Best wishes. Muah- hugs-

I agree if he's getting worse take him in.....:hug:

Sounds like a rough night. I hope things are better by now or that you have gone in to ER.

At least they should be able to stop the dry heaves and/or determine if there's a partial obstruction or something else possibly causing the vomiting. And yes get some fluids in him.

Keep us posted.

FWIW about the meds, vs. surgery vs. ?

The problem with surgery is that once you take it out that's it. No putting it back. And you have no way of knowing how much surgery he may need in the future. Plus surgery is not a magic bullet. It might fix the stricture (and it may be needed for that reason) but the disease will come back at the site of the surgery especially if he's not getting any other treatment.

Meds - so my then 10 year old son went on 6 mp and was on it for about 2 ro 2 1/2 years. Then I switched him to MTX oral. In between he also went on Humira. It took Humira to get him into solid remission. After he'd been on it for a couple years he chose to stop and stay on just MTX which has held him until this summer when he developed a small flare. That has apparently responded to increasing the dose of MTX.

I swore I would never put my son on these meds and then found that I actually had no choice if I wanted him to have any quality of life, if I wanted to preserve his health both in the short and long term, if I wanted to allow his body to grow and develop, if I wanted him to develop socially and attend school regularly.

All of those "knowns" were on one side of the scale. The other side of the scale was mostly unknowns. The tiny, tiny risk of developing cancer, the possible changes to his body that might become problems in the distant future, risk of infection and side effects.

For me it became simpler - not easy, but simpler - when I really "got" that for my child there really was no choice. That to refuse meds was to rob him of his childhood and possibly his adulthood due to the continuing damage this disease was going to do to his gut.

It may be that you are one of those families who can sustain EN for long periods of time and whose child responds really well and is able to handle staying on it for long periods. In that case, I would do that.

Otherwise, my honest opinion is you need to make peace with the meds and go forward instead of going in circles worrying at it without making a decision.

I would also say that I would choose MTX over 6-MP at this point although I'm not really sure that it's going to make that big of a difference.

All the best

Sorry to hear about Lukas! Is it possible to phone your GI and let him know how bad it's got? Maybe he would see Lukas instead of the oncall gastro.
I have to say (and it's only a personal opinion), that I don't seen how the med will fix a stricture. I would say it's worth getting a surgeon's opinion anyway - asap. If they operated and removed the stricture then they could keep him well on the meds afterwards. At least get the surgical referral going, it doesn't mean you have to go for the surgery. Good luck!

How did the night go?

I sure hope you both were able to get some rest last night. Lucas' story sounds a lot like my son's---he was diagnosed at 9 and didn't really have any problems until he was 13.

About a year ago he started Remicade and then was having vomiting about every other month. That went on for about 8 months. This led up to an ER visit about 4 months ago because of severe vomiting. Turns out he had a 4 cm stricture and had that removed. Surgery has made such a difference in him.

I would definitely at least have a visit with the surgeon to get their opinion.

:ghug: I hope Lukas is doing better this morning.

Good morning, everyone. Thanks for the responses. The dry heaves stopped around 1:30am. I was fully dressed and ready to head for the ER. Quite by accident, both Lukas and I ended up falling asleep around 2am. I told myself I'd just close my eyes for a minute before we left... but now it's 7:30am! He's still asleep. I will wake him up in a minute and start pushing fluids. We are on our GI's short list this morning and expecting a call anytime now.

I had lots of time to think last night. I'm going to request an MRE as soon as possible so we can see what's going on and compare it to last year. My biggest question: is it inflammation or scar tissue. Secondarily, has it gotten worse. Then we'll start 6MP (since he's going to end up on it with or without surgery), but also get a surgical consult.

Humira or Remicade would likely be the next if 6MP doesn't work, correct?

Does anyone see any holes in my plan? Things I'm forgetting to consider?

Thanks...

Mehita, you may consider enteral feeds.
When V was diagnosed in 2008, she had such awfully impaired gastric motility she was vomiting even water.
She lost 19lbs in 7 weeks.
Formula feeds of a "broken down" version of formula will ensure he gets the nutrition he needs while waiting for the drugs to work.
Formula was V's sole tx for three years, no drugs at all.

Sadly, it was insufficient to halt disease progression BUT her nutritional status has been/is stellar as has/is growth/development.
Many kids drink the fromula but with really bad motility a feeding pump as V used/uses is best.

I'm so sorry your son is having to endure so much. I'm too new to know anything about med choices but I pray he wakes up feeling much better.

Hi there, I was in the same situation as Lukas three weeks back....I was vomiting continously and had severe abdominal pain....

Is the vomiting bilious in nature? I was vomiting bile due to obstruction..

@shalinco - The vomiting, towards the end, was all bile. He's awake now and has a sore throat, yucky taste in his mouth, and still some cramping. So far two sips of Gatorade have stayed down. Wishing the doc would hurry up and call...

Mehita, I'm sorry he is feeling unwell. I hope you get some answers and a good game plan soon. Its awful watching ourk kids go through this horrible disease. My daughter is going in for an MRE tomorrow.

So glad something is trying to stay down. I've learned from experience that warm fluids ( room temp) cause way less discomfort and/or cramping. Hope everything goes well today. Keep us posted. Thoughts going your way! Muah- hugs-

My son had extensive stricturing at the time he went on Humira. It wasn't clear how much was inflammation or scar tissue.

It's not easy to tell I'm told - and was shown on the films - because the appearance is nearly identical. That's one reason why they do the glucose push on the MRE I believe. It stimulates peristalsis which should help identify areas that are "fixed" and don't move much. Of course you can still get that wiith swelling due to inflammation so it's still not that helpful I think.

Anyway, what I really wanted to say was that my son's recent MRE showed ZERO strictures. I could not believe it. I nearly cried. That was the result of 2 1/2 years of treatment with Humira plus 6-MP/MTX and continuing on MTX for another 2 years beyond stopping the Humira.

If I needed proof that using the meds had been the right choice - that was it.

That said I agree that some strictures have to be removed even if they're inflammatory. Hopefully that's not the case here.

And doing EN is always a good idea in my opinion. We did 2 stints and they were both good for my son, reduced his symptoms greatly. It just wasn't enough.

Hope you've gotten in to the doc this morning.

So sorry that your son is going through such a tough time. I know how exhausted you must be.

My son's first med was 6mp at age 12. It did very well for him for over 2 years. Not much in the way of side effects except hair loss. We have never had any experience with strictures, but he does vomit randomly every once in a while. GI has never found a cause for it, just calls it part of the IBD.

I like your plan. :thumright:

:hug:
DS took 6-mp for about 8 months .
It did elevated his alt and ast ( liver ) so we dropped the 6-mp dose and added allopurinol.
Hope it works for your child.
For DS it was not enough.

Your plan sounds great for a start. Way to think ahead. I do hope your doc takes everything to ask/tell him into consideration. That is an important part of therapy, getting the doc to understand what you are observing and documenting. They really have no idea, unless they too suffer from the disease. Unfortunately, a lot is trial and error for some individuals. I hope everything improves for Lukas. Muah- hugs-

I've said it before and I'll say it again... you guys are all so wonderful. While I don't really know any of you, it is very comforting to be able to ask questions and get support on this forum from people who "get it". And even at 2am my time, someone is usually up and awake Thanks!!!!

The MRE is scheduled for December 17th. Hopefully, he'll be feeling well enough by then to manage the drink (unlike last time!) and we'll get some answers. I'll take any tips and suggestions on the drinking though! We go to the U of MN Children's Hospital and have a child life person join us which is always great, but if you have ideas, I'd love to hear them.

After more research and reading, I'm over the 6MP hump. Thanks, Patricia56 and others for helping with that. If that's what we need to do next, that's what we'll do next to bring back a decent quality of life.

Again, thank you, thank you, thank you...

Mehita,
How is your son feeling? I didn't see this thread of yours until just now. I hope he had a better day today! They cant get him in any sooner for the MRE? I know when my daughter was having some issues in September our new doctor got her in for an MRE two days later. Usually if the GI calls directly they will get him in. If he continues to vomit I would push them to make that call. I think your plan is definitely reasonable and a good start.

Hey Mehita...:hug:

I am so very sorry to hear of all your boy has been going through. Have things settled for him at all?

My son was older when he had a CTE so drinking the contrast wasn't an issue. The only thing I can suggest if you do think it will be a problem is if he open to the idea of an NG tube then it could be given that way. Mind you, I don't imagine anyone is open to the idea of an NG tube! but it may be worth considering to decent films.

Patricia has laid out the reasons so well for medication. It is a ghastly decision to have to make, both of my children take Imuran and as much as I hate the thought of it it has been kind to them and assisted them to maintain full and healthy lives. The old saying about better the devil you know than the one you don't really suits this disease well. Crohn's is the devil we don't know, it is often silent, unpredictable and unforgiving but at least with the medication we know what may happen and we know what to look for and we know we can track it. I have been a companion to both of those devils and I will take the devil in the form of meds any day.

:hang: Mum, you truly are doing wonderfully well for your lad. :hug:

Dusty. xxx

How is lukas doing nw?

Thanks for asking, shalinico. He's "managing". Two nights ago he had a pretty tough stomach ache... rated it it a four on the 1-10 scale, which is high for him. He continues to show classic stricture symptoms. We're just taking things day by day (even hour by hour some days!) and hoping to get to the MRE on Monday.

Unfortunately, all his labs came back "normal" earlier this week. No inflammation.

Mehita,

Agreed, Crohn's Sucks.

Don't have a bunch of advice on what you might do for treatment, try to listen to your child's and his body, pay attention to his reaction to any new meds. And be prepared to stand up and make suggestions when you think the Doc's are going in the wrong direction. It is just a tough situation to be in, my heart goes out to you.

As for the vomiting from the blockage. That I know a bit about. Make sure to get him on a clear liquid diet after this event. Just like the hospital does, he need broth (I just use bullion), jello, popsicles, Gatorade, and probably some pediasure. He needs to be kept hydrated and you need to go easy on the restrictive area for a few days. No apples, broccoli, onions, corn, etc. Just let it cool down for a while.

Can you equate any food he ate to his reaction? Does he have a certain spot in his abdomen that is sore get sore, and does he notice it before the vomiting comes on? I am with the Doctor, avoid surgery whenever possible.

Normally, for me, the hole episode last about 15 to 19 hours. That is from the moment I feel the pain in my abdomen, and realize I am not going to pass, to the time I finally get things to pass the stricture. For me I know it is over when my ostomy bag start to fill up again. For him it may be having a bowl movement. But he probably has it going both ways. He will know, the pain will subside and he will be able to rest. If it were to ever go past 24 hrs. I would go to the ER. I am sorry it is such a helpless situation for you, but you been hung over before, or not, but this experience is something you can do little about. It rips my wife up everytime it happens to me, I have kinda learned to get through it, but it sucks just the same. Pain killers help some, and it seems that the acid blockers work a little as well. But, it just has to run it course.

Hope Lukas starts feeling better soon.

Peace and love.

I'm pretty sure of 6mp doesn't work, they try Remicade and Humira types of treatment. My son tried all of those and is now going to try Methotrexate. So there are still some options out there that can help him.
Hope he feels better. Crohn's stinks!!! And its hard to watch you child be sick all the time

It sounds like you and my son have a few things in common, higbonzo. For him, the tummy aches tend to become more frequent, his appetite drops, constipation kicks in, he feels full after a few bites. It all sort of builds up and then peaks with vomiting.

To my son's credit, he is really, really good about rehydrating after a vomiting spell. Typically within 24 hours he's completely back to normal and starving. While he understands the logic and need to for a liquid diet for a few days, the kid in him wants what he wants and he wants food. It's tough because he's gluten free (Celiac), low residue and low fiber. That's a lot of restrictions for a kid (and mom!) to manage. We've done food logs for months and haven't found any trigger foods or patterns.

I'm not hugely in favor of surgery either, but if the stricture is all due to scarring, I'm not sure there really are any other options. We need to figure something out soon though. Puberty is right around the corner and we only get one shot at that.

Thanks for the advice and support. I really appreciate it. This forum is so wonderful!

Hi mehita I to totally and utterly agree this disease is rubbish rubbish rubbish . I hope your soon is feeling a bit better , and the pain and vomiting is settling I'm so new to Crohns so dont have much advice .Lewis is on nfliximab and now aza as he is in pain and sickness has started with him we having the barium upper and lower to look for strictures to , hope u get some more sleep . Sending hugs ,xxx

Mehita said:

It sounds like you and my son have a few things in common, higbonzo. For him, the tummy aches tend to become more frequent, his appetite drops, constipation kicks in, he feels full after a few bites. It all sort of builds up and then peaks with vomiting.

To my son's credit, he is really, really good about rehydrating after a vomiting spell. Typically within 24 hours he's completely back to normal and starving. While he understands the logic and need to for a liquid diet for a few days, the kid in him wants what he wants and he wants food. It's tough because he's gluten free (Celiac), low residue and low fiber. That's a lot of restrictions for a kid (and mom!) to manage. We've done food logs for months and haven't found any trigger foods or patterns.

I'm not hugely in favor of surgery either, but if the stricture is all due to scarring, I'm not sure there really are any other options. We need to figure something out soon though. Puberty is right around the corner and we only get one shot at that.

Thanks for the advice and support. I really appreciate it. This forum is so wonderful!

Click to expand...

Yes, sounds very familar. It sounds like he might not be aware of when it is actually hitting him. Or, it is just not regestering. The constipation is probably the blockage already set up, and then it gets to a point where it starts to reverse itself. I have a teen age daughter, so I know how tough pre-teens can be, and truthfully, I am so greatfull my children are healthy. I really do feel for you. One thing that I have done over the years is I eat my food in sequence, or better stated, a couple of bites of one food, then the next, then the next, until I am done. I never eat to much of anything one item on my plate at once. I try to blend them as they go through my intestines. It does seem to help. I also always start the day with blended fruit shakes, or some type of shake in the morning. I like orange juice and banana, but I don't know if that is on his diet. I really believe there is probably something to the juicing. I know if I eat a banana by itself, and not blended, ouch, I can feel it pass. Anyways, I have found that this seems to get things started better in the morning. I can tell you what jams me up is when I wait till I am way to hungry and I just eat way to much of one thing at one time. And it usually is in the morning when I have a long void in my intestines.

Hope this help some.

Take care.

Hi Mehita,

I couldn't agree with you more - I HATE this disease too!!

I just read your thread and wanted to offer my take on your situation as you asked for.
(My son was diagnosed with Crohns 15 years ago - and we have been through it all unfortunately).

Due to your son's current state of health, I would not go with the 6 MP as it can take up to 12 weeks to work. It sounds to me that he needs more immediate relief. Also, once you start the 6 MP, if it doesn't work, it would be preferable to not be on a biologic med and 6MP at the same time - unless really needed.

I would consider Remicade. It would help with the stricture (unless of course it is due to scar tissue) and have a more immediate effect and better chance of putting him in remission.

While small risk of lymphoma is certainly concerning, the risk of severe complications of Crohn’s disease is much, much higher and needs to be balanced against the risks and benefits of medical therapy.

Of course the treatment of choice would be one with no side effects - and that would be NG tube feeding. Not everyone can do it - but, it truly can put you in remission if done correctly.

Lastly, if you do see a surgeon, before they remove this stricture (if it comes to that), I would ask if the stricture could be resolved by doing a simple balloon dilation (which is passed through a scope), or if the stricture is too long for that, I would ask if it would be possible to perform a strictureplasty. This is where they cut the stricture horizontally, and then sew it up vertically, thereby widening the stricture without the loss of bowel.

(And if he ever has shortened statue due to the IBD, see an endocrinologist for some growth hormone - which would have to be started before his growth plates have fused which can be determined from a simply hand x ray).

That's about it - I am so sorry that you are having to go through this. Just know that we will be here to help you as much as we possibly can. I know we all have very tough choices to make, and it certainly is not easy.

Still waiting on mre? Ugh, I'm so sorry. Stay strong as this too will come to resolution soon. I do hope lukas' pain is at least controlled. Best of luck to you. Muah-hugs-

After reading your post I will NEVER say that I'm MAD about geting DX with crohs right when I was ready to retire. I was 61 years old at the time. After reading your post I am now glad that I got it late in life. My heart goes out to you and your child and I will pray for you and your child. NO child should ever have to go through this. As I type I cry asking GOD to help you find calmness and remmision. I cannot find words to tell you how much people on this site will support you going through this. Stay here when things get bad and good. You are a insperation to ALL of us.
Pops.

Thanks for all of your support and advice, you guys. There simply are no words...

Two more days until the MRE.

It will go great and hopefully provide answers. Keep us posted as I'm praying for great results. Muah-hugs-

Just wanted to wish you luck with the scan - hope it all goes smoothly and you get some answers. We are also going to be starting the 6mp after the Christmas holidays!

Wishing you luck with the MRE! Thinking of you guys.

good luck!!

What a long morning. I'm not sure who's more exhausted - me or Lukas!

After it took him a good 30 minutes just to get 1/2 a cup of VoLumen down, I knew we were in trouble. He kept having BM's too, which they discourage, but he couldn't control them. Then the tears and nausea kicked in. Do all kids react like this or just mine? He gets so nervous and anxious... I'm usually VERY patient because I never want him to feel bad about having this disease, but at the same time I knew this MRE needed to get done. He protested big time, but I requested an NG tube. I kept asking him what he wanted to do - I think it's important to give him some say - but he couldn't decide... so I decided for him. I felt horrible.

After today, I don't think I will ever get him to willingly do another NG tube. The nurse and doctor all said he did better than most kids, but I think they were being nice? Is 10 seconds good?? He didn't struggle or fight us like I thought he might, just kept gagging (he had nighttime laryngospasms earlier this fall). I'm thinking we just nixed any possibility of tube feedings in our future.

On a positive note, he did well in the machine. Held his breathe, listened well, and followed directions perfectly. Because we were able to pump all the needed contrast in him via NG, she said the scan quality was really good. Now we just wait.

While we wait, I'd love to hear how you've managed MRE's, drinking contrast, and NG tubes so I can file it away for next time.

Mehita....Glad its over...:hug:

Its horrible what we have to put our kids through.

I can't really give you any advice for next time as my daughter had no trouble at all...it looked like water and she said it tasted like water so it might have been different to what your son had.

So sorry he had such a rough go of it. My son had actually taken his NG tube with him as he would have preferred to use it rather than drink some horrible drink but, he found the drink tolerable. I imagine there are different drinks available???

I'm sorry he had a bad experience with the tube (but, 10 seconds does seem like he did pretty good for a first time!) Hopefully, it won't completely deter him from ever trying EN if needed! :ghug:

:ghug:

Hugs to you! It is horrible when we have to put our kids through these things!

We didn't have any trouble with the MRE liquid but had HUGE problems with the prep for the scope. It was a hideous and traumatizing day for all of us.

I agree with Tess, if it only took him 10 seconds to get the tube in I'd say that was a HUGE success!

Hope you get the answers you need from the MRE.

Well done to him for getting through it all. It really is horrible watching them like that. And making decisions that cause them more pain/upset is awful - felt like that last week with my daughter.
Andrew really hated getting his NG tube in and he would never willingly get another one done! However I do think the nurse makes a difference. When we were in hospital last week there was a girl with Crohns that had the tube twice before and been fine, but last week it was really badly done and she was quite upset afterwards.
Hope the results don't take too long!

Hugs ....
DS did not have an issue . We use Kool aid single packets split between the three cups to get DS to drink it all.
He also drinks formula daily through a straw so maybe not a good measure .

Mehita said:

Then the tears and nausea kicked in. Do all kids react like this or just mine? He gets so nervous and anxious... I'm usually VERY patient because I never want him to feel bad about having this disease, but at the same time I knew this MRE needed to get done..

Click to expand...

I just can't imagine. My girls have no real issue, asthma, but they have outgrown it for the most part. Anyways, my oldest daughter is 20 years old and still chews meds, or has them prescrib meds in liquid form. We have had them get blood drawn before and that was a nightmare, I can't image trying to get them to swallow a NG tube.

I offer you all my patients and all my positive energy and a great big Hug.

Keep up the good work Mom.

Peace and love.

Phil

Reading your post brought back so many memories for me. It's just awful having to watch your child go through pain and suffering like that!

The only thing I would like to add is that the type and size of the tube makes a HUGE difference. The 1st time we used one, we had no idea they came in different sizes, and the nurse used this really thick hard tube which was a terrible experience. After I researched it a bit, I discovered that they make much smaller, softer ones, like the Argyle 8 inch French tube made by Kendall. It is very soft and flexible and MUCH easier to insert (especially if u bend the tip first, before inserting.

So please don't let this one bad experience leave you disheartened. It makes me mad every time I hear about a medical professional using a regular size tube for a pediatric patient.

On the good side, it looks like you are going to get a really good picture from the tests. It could not have been done any better than that. You are doing an amazing job as a mom! Don't ever forget that.

I suggest you find him a therapist who can help him learn some relaxation exercises to help him manage his anxiety in those situations. They are going to be a part of his life from now on and the sooner he learns and masters those skills the better. Aand they will serve him well in other areas of his life.

YOu may also want to consider asking for mild sedation.

Using an infant size NG tube that is super flexible can made a huge difference.

Let him insert the NG tube himself, with guidance/supervision of course.

Act matter of fact about it all.

Do not give him a choice where choice does not actually exist. You can give him a deadline and/or a choice about when something happens.

For example:
If you have been able to drink X amount by X time then the radiologist says that will be enough. A sip every two minutes should do it.

If you're not able to drink that much then they will have to place an NG tube. Would you rather have the NG tube now so you don't have to drink anymore?

It is very tough and painful to have to be the caregver in these situations. Your job is to be supportive and protective but not too supportive or protective, if you know what I mean.

For example:

My son hated blood draws like most kids. I didn't argue I just said it was time to go and if he didn't go he lost XX privilege until he went and got in the car. Same to go into the lab. I also explained to him why it was important to get his labs done which cut down considerably on the resistance.

I held his hand while they stuck him and coached him through it to the extent he wanted me to do that.

If a lab tech had done 2 sticks and failed I didn't let him/her do a third. I insisted on a different person if that was an option. If it wasn't they got one more try and then we left the lab.

If it was vital that labs be done that day we went to a different lab where I made sure they knew he was a hard stick and they gave us their best tech.

Hiope that helps.

Some things you just have to learn by living through them.

We got the MRE results back. No major changes from one year ago. The stricture is still there, maybe slightly shorter, and no Crohn's anywhere else. All one organs are good too. There is some inflammation, but very minimal. So minimal in fact, that the gastro isn't sure adding 6MP is going to be of any benefit. He did say that we could consider surgery but isn't strongly in favor of it. He suggested status quo.

That was not what I was expecting.

L has been doing fairly well for the last two weeks. Daily BM's, no stomach aches, no vomiting. The only issues is still the amount of time spent on BM's. Some days he is in there for an hour... but he truly is having ribbon-like BM the whole time, attributable to a stricture.

The gastro said its up to us on what to do next, if anything. Unfortunately, I have no idea what to do. My instinct is telling me not to do 6MP... but I'm not sure we're ready for surgery yet either.

I still need to schedule a surgery consult, just to get educated.

Glad to hear the results...hoping the decisions come as easily as possible for you. We didn't have any trouble with the mre either. (((Hugs)))!

Mehita,

Statas quo is not all bad. Hopefully you can get his diet down and keep things moving along with out surgery or new meds. I am not a proponent of either.

Good luck.

Later...

Mehita,
Sending all the support and love your way. You are a great mother and i know Lukas appreciates all you do on his behalf. I hope the answer to your questions on meds or surgery present themselves to you so there is no doubt n your mind that it would be in the best interest of Lukas. Hugs, kisses and strength to you both. Best wishes for the holidays. Muah-hugs-

Mehta,
Glad to hear the results were encouraging. It is a hard decision what to do about surgery. I know it was a hard decision for us but in the end we were glad we did it and I think it helped start caitlyn on her road to remission. Meet with the surgeons and get an idea of what it would entail from them. There is also a procedure that is done where they use a balloon to widen the area of the stricture and possibly avoid surgery. I would ask about that option as well.

Thanks for update Mehita. :hug:

It is good to hear that the MRI results have remained unchanged.

Waiting and watching can be difficult though and I can well understand your hesitation in knowing what to do.

To me, while ever L's symptoms remain at bay then you can afford to mull things over but I guess the other thing to take into consideration is his quality of life. Regardless of overt symptoms being absent is his time spent on the toilet impacting on his day to day functioning?

How is he going with his weight and height?

Dusty. xxx

That's good that things haven't got any worse. It is such a worry having to try decide how to treat things. We are supposed to be starting 6mp in New Year but I am starting to freak again - just want to stamp my foot and go "I don't want to". :lol:
It'll be good to get the surgeon's opinion, at least then you will have all the facts to make a decision with - good luck!

Thanks for the update and so glad to hear things have not become worse!!

If you do meet with the surgeon, ask him if the stricture can be treated by:

1) Balloon dilation. Scope is passed through intestine with tiny balloon which they open up to widen the stricture.

2) Strictureplasty. This is where they make a horizontal slit along the intestine where the stricture is, and then sow it up vertically, thereby widening the stricture.

With the balloon dilation, you might have to repeat it in 6 - 12 mos if it narrows again, but with the strictureplasty it is permanently fixed.

My son had a very severe stricture where he also struggled to pass stools, and after multiple balloon dilations done, had a strictureplasty back in 2010 and it never returned - and his was very severe. Hope this makes you feel encouraged

I still haven't been able to schedule the surgery consult with the holidays in full swing.

I've been thinking about L's quality of life lately and am starting to lean more and more toward surgery. Just looking back at this past week and how much time and fun he missed out on with his cousins and family because he was in the bathroom, was nauseous, or had a stomach ache... it's not fair and it's starting to take an emotional toll as well.

Not to mention his diet. Being gluten free is hard enough, but to add low residue and low fiber on top of that is really tough for a kid. It seems like we're always saying no.

And to answer Dusty - he is in the 8th percentile for both height and weight on the growth charts. Four years ago he wasn't even on the charts so we are fairly happy with his progress, but I attribute the growth to being gluten free. I do think the stricture is restricting his calorie intake and absorption. It should be noted, I'm only 5'2", but dad is 6"... so it is possible he could just be taking after me.

*sigh*

I'm off to post in the adult section. Get some thoughts on surgery from that group. Thank you again to everyone for all your advice. I have written it all down and will be taking it to our next appointment.

Hugs

:hang:

Really hoping that things get better for you and your son soon.

Thinking of you Mehita. :hug:

The food choices are difficult at the best of times but when it comes to the festive season the differences are all the more apparent and heartbreaking.

Dusty. :heart: