Surgery scheduled.....doing the right thing?

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Hi Guys,
Thanks for the well wishes, I just escaped surgery. They put in a drainage bag to drain an abscess. If i didn't respond to the antibiotics they would have done the surgery, was so scary nurses coming to you to talk about stoma bags etc. However doing well now still have the drainage bag on which will be removed this week. Thank you for the advice, hoping I get my crohns under control it was all too scary.
 
OMG Marni's Mom, I bet we WERE there at the same time (TCH)....it would have been lovely meeting you! Nico is 17, so quite a bit older tHan your little one. I'm glad hearing his story helped....there are many stories that helped us going through this. Do you know how soon they want to do the procedure? By the way, I'm a UT gal....is hook 'em a UT thing or Aggie....goes to show how much I know about football! Gosh, keep us posted on Marni!! Who are her GI and surgeon?

An update on Nico.....some good, some not. His appetite is good and today went to school for most of the day. He is still on a bland soft diet because I'm scared to change it. He is able to drink up to 3 peptamens a day, which he couldn't do before, so that to me is an indication something changed for the better! On the not so good side, he is still getting that complete crashing fatigue after some meals, which was one of his biggest complaints before the surgery.....so I guess it wasn't successful there. He is so disheartened, and I am so sad and anxious for him. Keeping a food diary but cannot find a trend. It seems almost like an allergic reaction of sorts. Not sure if he's gained any weight (scared to weigh him) but will see docs tomorrow and find out. So anyways my friends, we are slowly trying to move from a soft/bland diet to more variety. How many weeks after surgeries were your kids on a regular diet? It will be 3 weeks tomorrow and am not sure how rapidly to progress. Did you try one new food at a time or just switch all together. Any advice would be so helpful.

Zahid, It sounds like you didn't have to have the surgery right? Glad to hear you so happy!
 
Awmom!!!! You're a UT girl??? I'm a UT girl, too! But I'm a bit perplexed that you don't know if Hook Em is Longhorn or Aggie. LOL. Gig Em is Aggie, Hook Em Horns is Longhorn. NEVER FORGET THAT! LOL.

We were SO close, but not close enough in the med center because we go to Children's Memorial Hermann. In Houston, I suppose you know, there are two big Pedi GI groups and no one else. So, you're either a UT Physicians Pediatric Specialty patient, or Texas Childrens patient. UT docs are at Hermann. I have heard good things about both groups, but we ended up with UT because when Marni first got sick and I called TCH pedi GI to try to get her an appointment, they said the first one they had was in three months. I told them I had a four year old with excruciating pain and diarrhea that had lasted six weeks, and they said, "We can see her in three months". Needless to say, I was turned off. When I called UT, they said the same thing, but I was so upset by then, I started crying and asked what is someone supposed to do with a four year old in this much pain and withering away to nothing, and the scheduler said hold on....and then Jacob, one of our doctors' nurses came to the phone to talk to me....and then he said to bring her in tomorrow. Needless to say, I love Jacob!

Having said that, I've heard the same stories about how other parents ended up at TCH. I guess it's who you get to talk to when you call.

I have met a couple of the doctors from the TCH group, though, at CCFA functions. Do you go to any?

As far as Nico's fatigue....can it be possible that the crashes are still happening because he's still healing from the surgery? Keep in mind that he's been sick a long time, and because of that, his body may take longer to completely recover. I will check back to see what your doctor says tomorrow. Please post.
 
Gig Em....that's it! Couldn't think of it while writing previous post even though people here say it all the time! LOL....that's my senior brain these days! I'm so glad you like and trust your doc...that makes all the difference. I have never been to a CCFA meeting...are theyngood?

Visit at the docs went ok. GI doc Said he doesn't know why he would get fatigued after eating....it's been happening for over a year.....one of his biggest problems, and one that keeps him from eating and gaining weight. I was hoping the surgery would address this, but I guess we are back to square one. So we drove home from Houston, ate dinner, and Nico tells me a bit later that he just went to the bathroom and had bloody diarrhea!! This is something he has never had before, other thana few days post surgery! He was white as a sheet (he's been rather pale lately anyways) and my heart just sank. We talked for a minute and then I had to go around the block to cry.....he just can't get a break. I know so many on this forum feel the same at times.....if they could just get a little break. To top it all off, he now has 5 exams to makeup tomorrow and he doesn't want to space them out. I know the stress is not helping him and have offered to see if he can do a home bound program.....he couldn't even talk about it. So sorry to be rambling on.....I am just so sad, and frankly don't know what the next step will be to help him get better.....he looked pretty bad tonight....sigh......
 
Awmom,

My heart goes out to both of you. I'm sorry you're feeling down. Many of us know that dark and empty place, and we are all here for you.

Reed was resistant to our school district's Home Hospital program at first, and he too didn't want to consider it. He was mourning the thought of not seeing his friends. Also, he was afraid of having to teach himself the curriculum. The program was a relief, but it did put a lot of burden on us as a family to help Reed keep up with his hard classes. Our district released funds to hire the AP and Honor's teachers to teach Reed at our house for one hour a week each. Ask for it. If need be, get the school board members on the phone, and get them to accommodate his classes. I think I recall that he's in tough classes, right? If you do it, make sure you have it written into the 504 that he has a reduced work load. We didn't do that, and it killed us.

The unknown is a scary time. I hope things improve quickly. It sure seems like the healing is still quite new. I hope time will help.

Hugs.

Kimberly
 
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Sorry to hear that! It is such a worry. I hope it is just the stress of exams causing the extra symptoms - hope his exams go well!
 
Thanks Kim, Sascot and MM,for your words of support and for the info about doing homebound exams. Nico went off to school this morning and without making a big deal I just told him to do his best and to call me if he needs ANYTHING. We will wait one more day before calling his GI about the bloody BM to see if things change today.

These kids have so much pressure their Junior year with this whole ranking system and needing to apply for college at the end of summer. He is taking all advanced classes and doing well until now.....we shall see what happens after today, and will talk to the counselor tomorrow if I see him too stressed out. He actually would love to do his studying from home so that is a plus! And I would love it too just so I can try to fatten him up a bit.....hard to know what to send to school!
 
Awmom, I hope Nico did well at school. We are going through the 504 process right now. We've had the meeting, and all that's left is the letter from the doctor saying Marni isn't able to attend school, and then the school district will send a teacher to our house twice a week for two hours to teach her what her classmates are learning at school. If she has a good day and wants to go to school, she is allowed to do that, but if she can't, she's not counted absent. It's the best of both worlds. It sounds like Nico is just too close to surgery to really feel 100% and it sure doesn't sound fair that he had to make up five exams all at once after surgery.

Did the bleeding stop? Could it just be part of the post-op process of healing after surgery? I'm going to keep checking back to see what you find out.

Stacey
 
Awmom

There is a "stop the clock" measure you can add to the 504. It allows your son to leave during a test to use the restroom, and to not have that time counted against him.

Also, I wonder if you could add a measure that stipulates the maximum number of tests he can take a day. Remember, just because it's in the 504 doesn't mean you have to use the option.

How did he do? Did his symptoms let up a bit after the tests? I bet he's really looking forward to the weekend!

Kimberly
 
Wow, thanks for all the info on the 504 plans. Nico went off to school this morning....said he felt fine. I think he was relieved to have almost caught up with tests (took 4 and will take 1 today). He is very pale and there was A LOT of blood in the toilet bowl last night. Have the feeling he must have a Bacterial infection.......he' never had this before or after surgery (well, a couple of days post surgery only)But called his GI and they will do more tests to see what cooking. To bad it Friday and unless the labs are open on Saturday, will not be able to get samples to them till Monday. Hopefully he will feel well this weekend so he can enjoy it!!

MM.....I'm glad Marni is getting a lot of flexibility so she can work at home but join in the activities she can!
 
Hi Kimberly,
I hope Reed is home and fine and that he had a great trip!
Nico is fine and said he had a good day at school. Appetite is good, and has not gone to the bathroom anymore.

In the meantime I spent half the day trying to get the lab order faxed to the clinic here, and also trying to figure out whether I should start the 6mp when all of this is going on. The doc also prescribed iron supplements because he is anaemic, but in the past iron proved to be irritating to him. Anyways, barely got the collection receptacles when the lab was closing, so I guess nothing will happen before Monday. If he starts to feel even a little bad I will take him to ER. It does not seem like his GI is very concerned, so I am hoping for the best.
 
Thanks Kimberly. He still hasn't used the bathroom, but hopefully all is ok. I do hope the doc isn't worried VS that the issue was not well communicated to him. Nico is nervous that it could be something wrong at his surgery sight, and I'm worried about everything. He started taking his 6mp today and I'm also so i hope he doesnt have some sort of infection, but his GI said it was ok to take it. So......I will try to sleep.
 
I'm sorry you don't have an answer. Waiting is hard.

It's also hard when your child is worried, because it puts you in the cheerleading/supportive role, when you don't always feel up to the part.

I hope you sleep. That always helps. Hang in there.

Kimberly
 
Sorry so long to post an update...Ben has been fine post op. Off pain meds by about day 7 then just tylenol a couple of times. He started a regular diet day 3 in hospital, I thought it was a bit much, but they ordered it!

Sorry to hear Nico is having issues Awmom, if I saw blood post op in Ben's stool I would be on the phone with the surgeon & GE. That should not be happening and could be a really big issue. Hope he gets seen soon!!
 
It's good to hear from you Ben's rn.....i have been wondering how Ben was doing!!! Is he back in school and feeling well? Is he eating a completely regular diet with normal amounts? I am so glad all went well for you guys!!!!!!!

Nico's GI ordered some stool tests which we just took in this morning. He seemed fine this weekend, no visible blood like the other two times. I switched some foods around and that seems to have helped. He is still eating a blandish diet because when we were going to expand, the blood started. I will wait to see if the tests show anything (everything looked normal so I don't know). Can you tell me what a regular day of food is for Ben? I think I have lost all sense of normalcy where eating is concerned.

So glad to hear form you and thrilled that Ben is A-OK!!!!!
 
YEs, Ben went back to school April 1st. His only restriction was same as Nico - no lifting anything over 5 lbs. He is doing pretty good, it is taking time to eat much in one sitting but he is getting there. I stopped tube feeds at night (what he had been getting past few years) mostly because I discovered that they are putting a known GI inflammatory ingredient in his formula (carrageenan). For breakfast today he had 2 scrambled eggs in butter, 2 slices of bacon, 1 slice of cinnamon toast, 1/2 glass OJ. For lunch he only has a cottage cheese, yogurt, pretzels, we are working on a higher calorie lunch. For dinner probably chicken, potato, applesauce....still afraid of raw fruits & veggies. He drinks whole milk at meals too. The other night near bedtime he had 2 servings of oatmeal made with whole milk....so, appetite improving. Energy is good, not overly fatigued, he was sore from being very active over the weekend (he was out of school and doing sedentary stuff for 3 months prior to surgery with his nausea). I signed him up for soccer so he went to practice Sunday and again today. Getting used to school and homework again too.
Yes, energy is really really good. That is why I was worried when I read about Nico with his fatigue and bleeding....
 
Gosh, that is so good that Ben's energy and appetite seem to be so good. Ans that he is backin school and ready to do sports! He is really on a regular diet so you have lots of options and thanks for sharing his menu. I am starting to expand as we are able...he is so ready for more variety! I know what you mean about the carrageenan.....its in so many supplements...you'd think they would cut it out no? I didn't know ensure powder existed Catherine...thanks, I will check that out! Nico drinks peptamen jr...but a change might be nice if he tolerates it.

I don't know what's up with the anemia.....if it was there before the surgery or if it is a result of it, or maybe something that happened after. I am going to dig into the matter tomorrow. Hopefully it's not an inflammatory thing rearing its head! All I know is that I have to get some weight on him ASAP....... I can't imagine what would happen at this point if he went into a major flare.

I hope things keep going well for Ben and that his remission lasts forever!! Keep letting us know how he is doing.......it's inspiring to hear good things! Thanks for being there Bens rn!
 
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