In hospital for a month now...help!

[kernelmom3]

My 14 year old daughter was diagnosed a month ago (my 16 year old son was diagnosed last year and had many hospital stays but is in remission now...yay!). She has two abscesses that are being stubborn with oral antibiotics, a fistula by those abscesses, and her recent (THIRD) MRI showed her bowels are pretty dilated. She was in a lot of pain so they gave her the second loading dose of Remicade and put in a PICC line so she could come home with IV antibiotics. We went home and came back three hours later! She's not eating, not drinking, still cramping, bloated....I can't manage that at home! Now they're talking NG tube!!! When do i say STOP and have a resection done? How much more can she take!? She's barely 80 pounds and she never feels great. She just missed her middle school musical that she had a great role in so mentally she's not doing great either. She keeps saying she wants her old life back! I am hitting a wall....I don't know what to do. How can I advocate for her when I don't know what to do!!??

 

[crohnsinct]

Yikes! Hugs! Sorry I have not been there so I don't have any advice.

Where are the abscesses? What two placed does the fistula connect?

Have you met with a surgeon yet? What are they saying?

What does the GI say about waiting for Remicade to kick in?

I have watched a few videos on surgery and there are so many things to consider...I can't say for sure but I seem to recall they like to get certain "things" to a certain point before actually going in and doing the surgery...how's that for no intelligent info?

While you are at the hospital I would give child life or psych a call and see if they can't help her navigate this difficult time. No shame in that. It has been a long while, she is suffering, she is missing out on life, it is holiday time, she is a teen, is she on steroids? ...no wonder the poor girl is having a tough time!

 

[kernelmom3]

So here's some answers haha:
Where are the abscesses? What two placed does the fistula connect? They think she had a spontaneous mini-perforation and then the fistula and abscesses happened when her body repaired it. They don't think the fistula is connected to anything.

Have you met with a surgeon yet? What are they saying?
The surgeon who did my son's perf repair last year has been seeing her everyday for the last week (I LOVE him!) and he's very conservative. He doesn't want to do surgery unless it's a last resort.
What does the GI say about waiting for Remicade to kick in? They watched her for 48 hours after she had it and she did seem better but it's going to take awhile to see any real improvement. The plan is to do IV antibiotics through her PICC line (here or home when she's feeling better) and another MRI in 2 weeks to check the abscesses and dilation. If they're better, continue Remicade. If not, most likely surgery.

I've had the social worker down here a few times and Child Life has been awesome (when she's here). Thanks for all the advice!!

 

[pdx]

So sorry to hear this. What a rotten month for all of you. My daughter had some microperferations and associated infection last winter and was in the hospital for a week, and that was hard enough.

I don't have advice about the abscesses, but I can tell you a little about NG-tubes. We spent the first two months after my daughter's diagnosis trying to avoid an NG-tube, because it seemed like something that my daughter wouldn't be able to bear. When she was finally so awfully sick and malnourished that we were forced into it, it turned out to be so much better than we had imagined, and it honestly ended up giving her her life back. We are only sorry now that we didn't start it the day after she was diagnosed.

We had the tube placed in the hospital, using laughing gas and ativan to help her stay calm. The first 2 days after it was placed were difficult. My daughter's throat was very sore, and the tube just felt uncomfortable. Also, the original formula we used made her nauseated, and then once we found a formula that worked for her, we had to adjust the flow rate until we found a rate that didn't make her feel sick. All the adjustments took about a week, and then it was easy for her. She hardly noticed the tube, and she gained back about 20 pounds during 10 weeks using the tube, along with regaining energy and losing all abdominal pain.

After the 10 weeks was up, her doctor wanted her to continue supplemental feeds at night, and E was able to put the tube in herself each night, and remove it in the morning. I would never have guessed that she'd be able to do that. By June, she was up another 5 pounds, and Remicade had finally kicked in, and she was able to stop the tube feeding.

So, I guess that's a long way of saying that NG-tube feeding can be extremely powerful, and I would definitely give that a try before surgery. Even if your daughter does eventually need surgery, the tube feeding can help give her the strength to be able to recover well from the surgery.

Best of luck with whatever you decide to do. My heart goes out to you and your daughter, and I hope that she gets some relief soon.

 

[Maya142]

I wanted to add more about NG tubes (though pdx really said it really well):

My daughter was VERY against an NG tube. She was drinking shakes, but couldn't gain enough weight and so her GI insisted she needed on. She was admitted to watch for Refeeding syndrome and an NG tube was placed (no sedation). M was miserable that night - her throat was sore and just uncomfortable.

The next night, she learned how to place it herself. She had a great nurse that walked her through it and was able to do it by herself on the first try! The tube already felt a LOT better the second night.

M inserted the NG tube every night after that, did overnight feeds and took it out in the morning before school, so no one had to know. It took about a week before she got very good at it.

We had some trouble finding a formula that she tolerated but after that, it was smooth sailing.

My daughter liked the NG tube way more than drinking the formula to gain weight!
There are videos online of kids inserting the NG tube and taking it out by themselves.

I also recommend a psychologist, one that has had experience with chronic illnesses. My daughter really really did not want to see one, but thankfully, her GI insisted and it has made a world of difference. Her psychologist actually works in the IBD clinic so has lots of experience with kids with IBD. It really helped M deal with medical things better and accept that her life is going to be different from her friends' lives.

Sending hugs and good luck!

 

[ronroush7]

Have you started the IV antibiotics yet! I,once,had an abscess that hung around for three months. They drained the abscess and sent me home the next day. A week and a half later, the abscess was active again. They drained it again and put me on IV medicine and kept me for a week. The medicine by IV is what did the trick for her. Keep pushing for your daughter and if you don't get satisfaction seek out a second opinion. Let us know how it goes if you have a chance .

 

[Sascot]

Not something we have dealt with although my son had a fistula and abscess operated on. Just wanted to send healing thoughts. As for the NG tube, my son did do the 8 weeks on Modulen with the tube and after a couple days he hardly noticed it. Hope things get better

 

[Robrich]

So sorry to hear about your daughter. The disease can be very aggressive in young people.
I spent over a month in the hospital when I was DXd at 15. All we had then was cortisone and it took 5 weeks over 2 stays to get it under control. But after that it was never as bad.
What I have learned about this disease is that when it is this serious and unresponsive you have to bring on everything at your disposal. Have you considered adding methotrexate or AZA to the treatment or even steroids or both to try and get it under control?
I would.

 

[my little penguin]

Big :hug:
No abscesses here
But hospital stays
Make sure someone is switching off with you to give yourself a break even if it's just at night
DH would switch with me so I could get fresh for the day and doctors by sleeping in my own bed .

 

[DustyKat]

:ghug::ghug::ghug:

I am so very sorry to hear about your daughter.

Just a couple of observations and questions. I will state now that what I am about to say are generalisations about ileal Crohn’s and its complications so they may not apply to your daughter’s situation…

• Fistula’s originating in the ileum are notoriously difficult to heal with medication, especially when they develop as a result of a spontaneous micro perforation.
• I am in no way doubting the expertise of the doctors attending to your daughter but I am puzzled as to why she was commenced on a biologic when there is infection present.
• Have the abscesses been drained? An intact abscess is very difficult to treat with antibiotics alone.
• If they have been drained have they reformed?

Thinking of you both. :hug:
Dusty. xxx

 

[CarolinAlaska]

I'm so sorry. Things will start turning around. Hang in there.

 

[kernelmom3]

They have drained one abscess with Interventional Radiology. That one is collapsed but still shows up on imaging. They are getting smaller and smaller with each image but not going away. They wanted to start Remicade because with one drained and both getting smaller, they wanted to treat the Crohn's before it got worse. No prednisone though...

She got the NG tonight and HATES IT! She calls it Satan's Tube (poor thing)!

 

[Maya142]

My daughter absolutely HATED the ng tube the first night, but it really does get better. The second night was better than the first, though she was still uncomfortable

Tell her to hang in there - after a while, it didn't bother M at all.

Is she going to keep it in all the time or insert it by herself at night?

Sending hugs and thinking of you. My daughter has spent a total of 31 days in the hospital this year, though not consecutively (thankfully!!). It's so hard.

 

[DustyKat]

This is such a difficult time for you both, your daughter having to live it and you having to watch her do so. It sucks.

We too had a lengthy stay with my son, 1 week followed by another 4 weeks and this time of year too!, due to fistulae and abscesses. In his case surgery was required. I hope your lass responds to the current treatment and is well home in time for Christmas, bless her. :heart:

This is an old thread of his story if you feel you want to read of how things progressed for him…
http://www.crohnsforum.com/showthread.php?t=14388
…just start at the beginning of the thread and you will get the gist of things.

Dusty. xxx

 

[Sumayya]

I'm sorry to hear all these stories. I'm 15 years old and just recently spent 3 months in hospital. I've had crohns for about a year. I was admitted with really horrible pains, weight loss, poor appetite and loose stools many times a day. On September 17th 2015 a CT scan made my GI to come to the decision to do a resection in my large bowel. After the operation the pain was horrible and I had many dialated loops in my small bowel. Allowing the bowel to rest didn't stop the pain so my stomach was opened up again and more active Crohn's was found in my small bowel. I am no longer on feeds I have a Hickman line where I have PN feeds. I feel a whole load better now but I can't eat anything at all. A NG tube was suggested however my bowel wasn't tolerating anything, I would hate to have a tube.

Hope everyone is feeling ok! xxx

 

[Kero]

:ghug::ghug: What a crazy month! I hope you get answers and relief soon. It really sucks as a parent having to watch and not be able to do anything. But you are strong and you will get things fixed. Keep pushing!

 

[Optimistic]

Everyone has given you great advice here. I'm just chiming in to let you know there are even more people out here sending healing thoughts, energy, prayers, and whatever else to your daughter. I can't even guess how she might feel.

I'll second that I wish I had gotten a psychologist involved early, that NG tub is horrible in beginning but works wonders so worth every bit, and Drs wouldn't do a biologic until infection gone so maybe you want to ask about that. I also wish I had asked for a second opinion earlier.
Sometimes you keep doing what you are doing and you'll keep getting what you've got... Or whatever the old saying is. Feel free to use this input or toss.

Best to you both and hopr to hear things turn in better direction soon.

Edit: is she on steroids? I'd think that would be an early step?

 

[pdx]

Tell her to hang in there with the tube--it will feel better soon, most likely by tomorrow.

 

[kernelmom3]

Thank you all so much!!! She's not eating or drinking but they will maximize NG since it's in there and give her feeding a during the day too for now and she'll stay on IV fluids. I had it out with the ped on the floor because she said she thinks my daughter is trying to control her environment by not eating/drinking. I said "I respectfully disagree. To her, food equals pain". Then ped was asking my daughter what happened when she left Friday because she "looked awesome" and was "eating tons and gaining weight". Um...no. That was the ONE day I wasn't here, but when I left for work that morning she didn't look great and they NEVER weighed her after they admitted her last Sunday (she actually said "we don't have to weigh her EVERY day" and I said "they NEVER weighed her!") But when the weighed her the same night she was discharged as they were re-admitting her....she had lost four pounds! She should NEVER have even left!! Still in pain, lost four pounds in four days...use your eyes people!!! I just want her better!!!! Surgery will come consult, they're saying maybe do surgery to place a G tube!? Also psych will come consult because she is VERY depressed.

 

[Maya142]

How frustrating!!

My daughter has a GJ tube. At our hospital, they won't place a GJ or G tube unless the child has had an NG or NJ tube for at least a month (usually longer) so that they know the kiddo really does need the G tube for the long-term. If it's just a short term issue - i.e. the child is flaring and cannot eat - then an NG tube would be used.

My daughter had an NG tube for about 8 or 9 months. Then we went to an NJ tube for 3 months (she has gastroparesis) and finally had a GJ tube placed in August (it's basically a G tube with an extra port that has a tube going down to the small bowel).

It took her about 8 or 9 days to recover (some kids are fine after 2 days though!). She was in the hospital for 3 and given IV pain meds for 3 days. She was quite sore and miserable for the first 3 days and moving (anything that used her abdominal muscles - which is basically every movement - sitting, standing, going to that bathroom) hurt. But she healed quite quickly.

We had some issues with infections and pain around the tube for the first two months but after that it's been smooth sailing. No more pain, the tube works well and we are so grateful for it because she is unable to eat enough to maintain her weight.

In her case, she is unable to eat now because of the gastroparesis, but her weight loss started with a Crohn's flare.

She also has seen a psychologist who has been incredible. She works with kids with IBD, in the GI clinic, and it has made a world of difference for M. M was very hesitant to go to therapy and it took her some time to warm up to her therapist but it's really been a HUGE help. She was very anxious and somewhat depressed and her psychologist has just helped so much. I know I keep saying it, but I really, really, REALLY wish we had gotten M to a good psychologist sooner.

I hope your daughter feels better SOON!

 

[pdx]

That's crazy what the ped said. (Although I must admit that before my daughter's diagnosis, I often thought she was just being stubborn when she didn't want to eat. Once she was diagnosed, though, I felt terrible that I ever thought that.)

I agree with Maya about the G-tube. If your daughter only needs tube feeding for a month or two, the NG-tube is a much better option.

I'm sorry that things are so hard for you and your daughter right now. :ghug:

 

[Mehita]

I am in no way doubting the expertise of the doctors attending to your daughter but I am puzzled as to why she was commenced on a biologic when there is infection present.
Dusty. xxx

For what it's worth, DS was inpatient with an infected abscess and fistula when he started Remicade. He left four days later with a PICC line and two more weeks of IV abx that we did at home for the infection. Everything was cleared up by the time he got his second infusion.