My 4 month hiatus & D's changes in health

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SupportiveMom

SupportiveMom

Joined
Mar 17, 2013
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The last time I was on the forum was back in October right after we were in the hospital and told D got to keep her colon and no surgery over Columbus Day/Thanksgiving (Canadian) weekend. After we came home I started to realize how much Crohn's had taken over my life. Every day I was spending hours researching, talking to people, hanging out here in hopes to find some answer that the doctors couldn't. After we were told D got to keep her colon (for now is how the doc worded it), and all the antibiotics and meds we saturated her with she started feeling better. Was able to be off the prednisone for the 1st time in 2 years! The doctors wouldn't even speculate why all of a sudden she got better, just were glad it was happening. They think it might have been a combination of everything, but I think they still aren't sure. She actually only went the bathroom 4-5 times a day! Compared to 26 at her roughest period, and 8-10 right before being admitted, this was amazing!

Because her symptoms went from night to day all of a sudden we were able to go out again, her energy picked up. I felt like she might be in this "remission" everyone talks about and I was so happy. D has reduced her medication to the lowest it has ever been, Prevacid, Imuran, & Simponi and she has been out of the hospital the longest ever, 4 months. She had started enjoying school again and attending regularly and even signed up for swim club!

About 3 weeks ago things started coming back. She has slowly progressed in the last few weeks to now having loose stools at every bowel movement, winces in pain, and goes 14-16x a day. Oh yeah, and waking up in the night to go the bathroom, having accidents, and missing school again. Now that we know what remission feels like we want it back! Hope we can nip this in the bud soon and she can get into remission again.
 
I'm so sorry about the down turn.
Ironically this seemed to be Grace's period, 4 months of improved health and then the down turn.
She always seemed to be the revolving door.

So is the a plan in place yet to get her feeling better?
 
That is heartbreaking. I hope you can keep each other strong and work into a new plan for remission.
 
So wonderful that she had a period of feeling better, but how disappointing that it only lasted four months! I hope you can get it under control fast so that she can go back to enjoying her life :hug:
What about something like Entocort or Uceris? Less side effects than Prednisone.
 
glad she had that 4 months but sorry to hear she is not doing well again. This disease so stinks. It seems like the good times don't last for some of our kids. Sending big hugs your way and hoping this is just a little blip in the path!
 
Thanks everyone. I have to say the 4 months were fantastic. I actually got to go shopping with her, go downtown and not panic over where a bathroom was. I had a teenager with regular problems that weren't clouded by her health. She has a boyfriend and felt well enough to spend time with him. It was blissful (accept maybe the boyfriend part... not really ready for that ;-) )

Plan of action is just starting to determine what is going on. Nurse is trying to get her in for a scope in the next week, but it is one of those things of fighting for a spot. Now that we are at SickKids, things move a bit slower than her old GI. Her old GI though probably would have had her admitted to the hospital again immediately. We would rather avoid it if possible. I would be shocked if she isn't back in by the end of April though. Call it Crohn's intuition.

Entocort is still a corticosteroid. I think it only masks the problem and would like her to avoid it. Prednisone was a necessary evil for 2 years, but I felt it was like putting a band aid on a stab wound. Still has the osteoporosis potential. She already has poor bone density thanks to prednisone. Can't complain about the cost of that med, especially compared to Remicade or Simponi!
 
Just wanted to say thinking of you...I know the feeling (Crohns has taken over) and wish remission was longer for you.
So glad you were able to enjoy "normal"...isn't it fabulous!!
Wishing some more relief for you!
 
I'm sorry to hear of your daughter's renewed struggles. This is such a perplexing and unkind disease, and especially one that no child deserves. I hope that your daughter reaches hiatus again very soon. Peace be with you.
 
it is frustrating that you never know and can never put your guard down. We can't be sure what makes them better or what makes them worse.... Hugs your way.
 
OMG PREDNISONE? REALLY?

This is now the answer to next steps? I am so fuming. 2 years on prednisone, and now 3 months off prednisone and she is to go back on it full dosage? I am screaming inside! Why is there nothing else to help her? I have never heard my daughter so angry about her crohn's until I told her the doc said prednisone. She said she wanted to call the doc and swear at her and get it through her thick skull it wrecks her and turns her into a shell of herself. Now all she can tell me is to just rip her guts out. She is so angry and upset.

I am right there with her. This sucks.
 
Couldn't her GI up the dose of Imuran or Simponi instead? My daughter had a flare last month and we are increasing Imuran (and possibly switching to Simponi, incidentally) to get it under control. Or could she add something like Flagyl, just for a while?

Sending hugs - Prednisone is the worst and D deserves a LONG, LONG break from it.
 
Sorry to hear she had a setback! I do hope it's shortlived though and she'll quickly get back to remission.

Also sorry that she has to return to pred. :( Wish I had any ideas for you. Did they consider antibiotics? It seems that that treatment helped push her into remission??
 
How awful for you both! Can she not try the EN instead of Pred? Wasn't sure if it's something that she's tried.
 
I can sympathise with you at least in part as my son is back on pred but never had to take it initally as long as your daughter. He was dead set against it too as he doesn't like the side effects.It does do the trick but it is hard on these teenagers who just want to feel 'normal'. Sending good wishes to you as I know how awful this condition is for us as desperate parents.

I hope you get some relief from this treadmill soon.
 
SupportiveMom said:
OMG PREDNISONE? REALLY?

This is now the answer to next steps? I am so fuming. 2 years on prednisone, and now 3 months off prednisone and she is to go back on it full dosage? I am screaming inside! Why is there nothing else to help her? I have never heard my daughter so angry about her crohn's until I told her the doc said prednisone. She said she wanted to call the doc and swear at her and get it through her thick skull it wrecks her and turns her into a shell of herself. Now all she can tell me is to just rip her guts out. She is so angry and upset.

I am right there with her. This sucks.
Click to expand...

Me too. Jaedyn would be crying with her. I'm so sorry! Surely there are options?! :ywow:
 
Uping Imuran is part of the longer term plan. Once we up Simponi & it stops working she has NOTHING LEFT. I think the doctor is holding off as long as possible on uping it. Prednisone works fast. I think that is why she is going to it. D spirals pretty quickly and if she gets much higher for bathroom trips she will get hospitalized again. If she gets hospitalized I don't think she will leave unless they finally remove her colon. She is so past done, so angry, so frustrated, and beyond hurt. I know when she got to keep her colon in October it was a "keep it for now" but if we knew all she might get was 4 months we would have opted for her to take it out then.
 
Ugh! So sorry to hear. My daughter hates prednisone too. Can't blame them really! What about trying flagyl?
Also aren't there some other things she hasn't tried? What about entyvio? We are hoping to start entyvio in the next few weeks.
 
Entyvio was ruled out a while back but it is worth a revisit discussion. EN Sascot you refering to Enteral Nutrition? D did an NG tube only for exclusive enteral nutrition back when we had her 1st GI. No go on that. Flagyl doesn't help her at all and she doesn't respond to it except when she had a bacterial issue back when 1st diagnosed.

There isn't much else she has not tried unless something has come out in the last few months i missed. That is why we moved to SickKids to get her meds not available to other pediatric GI's in Canada and to get a second consult before surgery. She is just one of those difficult cases that even stumps one of the top ped GI's. I think all that is left is LDN, and her GI hasn't seen good results in her experiences with others. If you look at my signature at the beginning of this thread the meds list is so ridiculous. You know things are bad when you actually hope your kid has cdiff cause at least that is more treatable.

To think all these she has taken during puberty, it is a miracle she has grown at all. I think when I get home today it is time for a big cuddle & netflix fest this evening, and probably a good cry.
 
Has she been on Cimzia? I know it's not approved for kids yet but there are pediatric trials taking place here.
I hope you can get this under control soon :ghug:
 
I'm so sorry, this is just not fair. Keeping my fingers, toes and everything else crossed that spontaneous remission suddenly appears again!! And I hope if it does come to surgery she has a very long remission to follow while lots of new meds are being developed.

Big hugs!!:ghug:
 
So sorry.

Paging Xeridea, maybe they have ideas on other possible treatments.

They put together a great list of treatments.
 
Catherine said:
So sorry.

Paging Xeridea, maybe they have ideas on other possible treatments.

They put together a great list of treatments.
Click to expand...

Though I curate that list I don't think I can suggest any alternate medication than what's already been tried.

The only thing I can contribute is that since it seems to be primarily colonic involvement, perhaps FMT has an off-chance of stabilizing the situation a bit.
 
xeridea said:
Though I curate that list I don't think I can suggest any alternate medication than what's already been tried.

The only thing I can contribute is that since it seems to be primarily colonic involvement, perhaps FMT has an off-chance of stabilizing the situation a bit.
Click to expand...

Fecal transplant came to my mind too, and helminthes. I'm digging deep...
 
Here they won't approve them unless it is to treat c diff that doesn't seem to respond to normal treatments. Either her doc, or someone part of the IBD team wrote a paper on why we shouldn't do fecal transplants on kids yet. If we go that route it would have to be completely on our own I think.

When I collected her stool sample this morning she has a lot of mucus, soft to liquidy stool, and blood. Little pieces here and there. From experience her descending colon has definite inflammation. It is amazing that 4 months and it would come back.

Still wishing it was c diff instead. Hope it isn't both.

Helminthes? Never heard of it. Have to go google it.
 
Parasites.... well that would be better too. At least that is treatable. She probably isnt a high candidate for it. She is not around soil or sand (not with a few feet of snow on the ground!), not around young children that might ingest that stuff. We live in a big city, so no contaminated water. But if it exists, she would be the one to get it.
 
Yeah, I read a testimony on this forum of a man who gave his daughter this and she responded well to it. That is all I know. They used hook worms... Interesting, but ranges right down there on the bottom with fecal transplant in the "I want to do this in my lifetime" list. However, having my colon removed probably is even further down on the list... Always terrible choices with IBD treatment...
 
Treatment? Nah... not high on my list either.

Convinced nurse/ doc to try cortifoam until at least the c diff test comes back Tuesday. I could tell she want happy we are trying to avoid prednisone. if not much improvement by Tuesday I know she will push prednisone. Not the best answer but liveable. I better go stock up on Proactive and meditation music...
 
Mega hugs to you SupportiveMom. :ghug:

Tacrolimus worked for Angie’s lass for a couple years, has this been thrown into the mix?

In my thoughts. :heart:

Dusty. xxx
 
I had never heard of trying Tacrolimus before. The studies I find online aren't very conclusive. Is Angie still online? Hoping I tagged her correctly. Anyone else try it?

So for the cortifoam is not making any difference. Last time she did it there was pain (I am assuming because she had inflammation at end of her colon & rectum.) This time no uncomfortability, so I am thinking it isn't going far enough up into the inflamed area. Tuesday is going to mean prednisone, I can so see that now. Yuck. I need t go find a place that gives discounts for facials if you buy them in a package, that & a discount on wine for me to manage her mood again.
 
Tacro was a godsend...nothing else has worked and we got over two years of remission from it (we were facing surgery as well).
I will link my Tacro thread here, but know that the docs that put her on it (at boston childrens) stressed that it was a bridge therapy-not meant for long term use. I have seen children on it long term for post - transplant use and after careful discussion, her GI and I decided to leave her on it.
She still takes it but it is only taking the edge off (she is at 8-12 bms day/night with daily accidents and pain...when I tried to quit tacro after starting simponi she got drastically worse).

We still may be facing a subtotal colectomy, but IMHO 2.5 years was worth it regardless, and it's possiblt that one of the drugs that has come out since then will work for her and get us a few more years.

http://www.crohnsforum.com/showthread.php?t=58975
 
If D got 2.5 years I would think something was worth it too. I think we had just come to accepting the colon removal in October thinking that would be the most reliable relief. When the doc said to hold off, healing had visibly happened, and most of the inflammation was gone with such dramatic healing in a few months after starting simponi I was thinking it was such a great wonder drug for her. I still think it is doing her a lot of good.

When trying to accept losing her colon we started going to the ostomy meetings and talking to some of the people that have been through the other side like Jessica Grossman & her mom, and other people. It was great to have a role model for D in Uncover Ostomy that Crohn's didn't have to define D and she could become the successful person she has always meant to be. I even met with an amazing mom who's 8 yr old has an ostomy and has never regretted the decision. I know there are plenty of problem stories too.

Three years of this with only a 4 month break... I am not sure D is willing to keep dealing with more failed medicines. It just might finally be time to say enough and do the surgery. I want to see another scope or MRE for her and then decide. It is just so frustrating to know when enough is enough.

So izzi is on Simponi & Tacro & still 8-12x with accidents? How do you manage that? D is not at 10-12x thanks to adding cortifoam this weekend, but accidents are still happening. I think D handled the accidents better when she was in middle school. Now it is downright embarrassing in high school.
 
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Well after a 3 month break from predinsone she is now back on, and to full dosage of 40 mg. She has dropped 6 lbs in 1 1/2 week. Cortifoam not doing the trick. She doesn't even feel the stinging it normally brings, so I am guessing the inflammation is higher up in her colon. More blood in the stool too so doc told us we have to do prednisone now & I think I don't have much other choice in the matter.

C Diff was negative. I actually wished it was positive. I can't believe I wish she had c diff over what she is facing right now.

This roller coaster of health is so hard. How do you deal with it with your kid?
 
SM,
The roller coaster is really tough. I am also on a Facebook Crohn's and colitis group there are a number of kids who have had their colons removed maybe you want to join and get some advice?
Send me a PM if you are interested.
 
Ditto, it's a tough ride.
I deal with it because I don't have a choice.
My faith, friends and this forum are the only things that keep me staying in the seat some days.

Of course not all of us are facing the same choices you are but we're all here to help if it's needed.
 
Hugs, hugs and more hugs to you SupportiveMom. :ghug:

Yes, the roller coaster ride is one I wished I could have stepped off many a time. *sigh* :(

In my case whilst I found friends and family a comfort to a degree they didn’t really understand and I still felt something was missing, it was the forum that filled that void. It still doesn’t stop the nagging fears and heartbreak as such but it did help me to voice my concerns, frustrations and overwhelming feelings of helplessness here. It helped immensely that I knew the folk here truly understood what I was feeling and thinking and I knew they would be here with support any time I needed it. :)

As to what you wish for….oh man, I have so BTDT! In my case it just turned into another way to beat myself over the head with the guilt bat! :eek2: :lol: See, we so understand hun. :hug:

Thinking of you and :hang: mum!

Dusty. xxx
 
Sorry to hear that. Hope the Pred at least brings some relief until they can figure out what to do
 
Kim we have probably liked /commented on similar things. I am part of that group along with the Ostomy group too. Though I like the facebook group I like our community here best. Maybe it might help to get some addition advice too. Thanks for the suggestion Kim
 
I'm sorry that D, you, your family are all dealing with the struggles! When I've had worries, scares, concerns, etc., etc., I also found my forum friends to be the best support. While family and friends do care and offer their support, they really don't understand the concerns that come with every decision and, unless it's your child who is ill, I think it's hard to truly grasp our fears and worries.

It's hard but try to keep believing D will get to remission and stay there!!
 
We're all thinking of you and D. Hope prednisone can get her back on track!
 
I'm right there with you. It is very frustrating at times. I hope she won't have to be on prednisone long....
 
I ran out to the pharmacy & grocery store and returned to find my kids physically attacking each other. It was over D taking her older sister S's things. I know normal teenage stuff, but not expecting the physical stuff but guess it was boiling over over issues between them. Strange behavior as they are very close sisters.

After a 1 hr talk S shared how difficult it is for her that D is sick. She misses hanging out with her and doing things with her. D is retreating into her room (her bathroom is 5 steps away so it is easier to be there ). I am glad S shared the root of what is bothering her. Lesson learned. Crohns effects the entire family.
 
Yes, we sent both girls to psychologists. Both are sick but the younger one is much sicker, and it's hard on her older sister since she gets a lot more attention. It leads to a lot of guilt and resentment.
It's so so hard but having them see therapists really helped :ghug:
 
We did family therapy for a bit, 6 months I think. Looks like it's time to go back or have individual counciling. How do u feel it helps the on CD kids MLP? is individual better than family for this?
 
We have a combo
Family for a while then individual

The big thing that helped the most

Each day.
30 minutes of mom or dad time for each kid without distraction from the other kiddo
If the Ibd kid is sick then DH can handle for the 30 minutes

This really has helped things
 
Having individual time for my teens? They might think it's a punishment. Not that they don't like us, its just all about ANYONE else but the parents.
 
Now 8 days on prednisone. Thought I would see better improvement by now. Down to 10-11x a day. 1/2 with blood. Getting up in the middle of the night happens every other day. There is improvement, but IMO, not fast enough. I worry prednisone isn't doing what is used to do for her. Or maybe it is that bad inside and its just a lot of inflammation. Into SickKids we go in Tuesday for next steps, scheduling the scope or MRE. Weight loss is slowing down, but that is probably because of the prednisone and now her eating a little more + water weight gain.

I don't know what I hope for in the appointment anymore except for Crohn's & Colitis Canada's campaign - "Make it Stop. For Life." That is all I keep thinking about, just making it stop!
 
Very sorry to hear the pred is not working well. If her insides are so inflamed she may not be absorbing it well. We think my daughter is having absorption issues as well.
 
I am finally seeing improvement with prednisone at day 10. Normally doesn't take this long though. Absorption never thought of that. What made you come up with that possibility?
 
SM,
What made us think of it is caitlyn not gaining any weight on the prednisone even though she is eating. She did get very slightly the swollen face but that was just recently and she has been in the pred since October. It makes me think she is not properly absorbing things.
 
Doc appointment today. Scope scheduled for 2 weeks beginning of April. Surgery consult being scheduled too. Doc says enough is enough. Though she thinks as soon as there is supply of Entyvio she will apply for D to be on it, but it will probably happen after surgery. After scope we will have a new timeline. She was surprised the flare happened so fast, but thinks prednisone is now working since she is going 8 versus the 16 before prednisone. I guess I just expected quicker reaction. Blood 50% of the time doesn't show me it is working, but I will give it more time.

Entyvio was just approved here in Canada I understand. I'm told it has a few years before approval for children. Infusion appointments again... this better work. I like Simponi and would rather use it.
 
Lady organic thank you for the suggestions. Trials also happen here too, but rarely include children. They mostly happen through SickKids, or connection to I understand as they receive quite a bit of funding for this as an IBD centre. D has never formally been in a study, but has recieved drugs part of the study and included antidoctally. At this stage I wouldn't send my kid south for treatment as There isn't anything she can't be offered here.

Fecal transplants are out. I have seen first hand some issues that convince me not to offer it to my kid. Until they get the science better on it and the risk lowered I won't chance it.
 
SupportiveMom said:
Fecal transplants are out. I have seen first hand some issues that convince me not to offer it to my kid. Until they get the science better on it and the risk lowered I won't chance it.
Click to expand...

Could you share your knowledge on possible known or observed bad consequences please? Im highly interested in this treatment and I wanted to enroll in a trial in Calgary last fall, but finally I was not illegible. Thanks.
 
I met someone recently that perforated her colon during a FMT. She had to be rushed to emergency. She had to have emergency surgery and now has an ostomy because of it. Please keep in mind this in 1 person. I don't mean to bad-mouth the procedure, but she did it on her own as her doc would not perform it. She (& a friend of hers) did this to her, so she is the one taking the risk and has to live with the consequences. I couldn't do that to my kid as I wouldn't forgive myself for it. Her pediatric GI does not see the benefits yet for kids and says it has a far way to go before she will think of it as another form of treatment.

Why were you in-illegible?
 
Really sorry to hear about D's flare and possible surgery :(. Your poor girl, she's had to deal with so much.
M is starting Simponi tomorrow and we are really hoping it will be her miracle drug.
 
Ok I understand. Do it at home rectal enemas procedure is definately risky. I agree. Some people do it the gastric way which seems easier. I have chose not to try it at home for now. The dr who leads the trial in Calgary finally refused me because I was out of province. I was even considering moving to Calgary for 3 months, because the trial involves multiple visits, but that didnt convince them. Moreover, my colitis escalated pretty fast and I was no longer in the mild-moderate category required for that trial, so I had to abandon that project. My GI was ready to collaborate with me on this, share and explain my case to the researcher.

Now I am in remission, but if I am in a flare again, I'd be more than willing to try it under the supervision of medical GI research staff. Dr. Suskind who is the author and doctor of the latest encouraging study I posted above, works with naso-gastric transplant with pediatrics. He is still recruiting at this time as seen in the clinical trials going on.
 
Maya Simponi has been fntastic! It was easy enough for D to do all by herself so you won't have issues for your kid. No burning like Humira. I hope it works! keep me posted.
 
Lady I think there is a trial in Toronto too. Did you look at the trials page on the health canada website? I will look for that link. I thought it was cool to see what trips were available.
 
Thanks -M has heard all about how much Simponi does not hurt from her older sister who was on it from AS. I think she's quite excited. She's on a much higher dose than her sister was though, makes me nervous even though it shouldn't considering she's been on high dose Remicade for months now.
 
An update... waiting for a cancelation for another scope and we should have the date for the surgeon appointment soon. Hope is to have surgery mid to late June so she might have a summer to enjoy and tries to ginish grade 9. She may not be able to wait until June.

Doc is having her taper prednisone now. Down only 5 mg and blood is coming back stronger. Stool trips have mellowed to 7-8. Not sure how low I will let her go on prednisone with symptoms like this. She also has to be strong enough for surgery. At least prednisone is making her eat!
 
I hope she will be able to make it through the school year. IBD is hard enough without adding school stuff in. (Though Im sure if she did need it prior the school would make accommodations)

Pred sucks that way is is side effect ridden but effective. Tapering can be a hard choice.

I hope she doesnt get to much worse. Thinking of both of you.
 
I’m so sorry I am late to this SupportiveMom and so very sorry to read of all your lass and yourself have been going through. :ghug:

How are you getting on now?

Just to touch on the pred side of things…many people find that after the first course of Prednisone subsequent courses do take longer to kick in and often a higher starting dose is needed.

Thinking of you both. :heart:

Dusty. xxx
 
Thursday she had tapered to 25 mg of prednisone & had her Simponi needle. She seems to be doing well (knock on wood). Staying steady at 6 trips and no significant blood the flare seems to have ended. Figures because our scope is soon & I would rather them get a better picture during a flare. I am almost tempted to cancel/delay it. I am waiting for her to be on the other side of 40 mg - say 10-15 mg of prednisone and see how her symptoms do. If she stays steady then her flare has truly subsided.

The surgery would be so easier to justify if she kept flaring, but I have that stupid voice inside me head saying "what if this is the start of a long remission?" that makes me hesitant. It is as if her colon really is mocking us all!
 
Is surgery definitely happening then?
Hope the Simponi + pred continues to work -- fingers crossed!
 
Surgery is supposed to happen regardless as she can't stay in remission. 4 months is not technically remission, at least to her GI.

She can't stay on prednisone again long term. Her GI didn't even want her on it but we had no choice to get her under control fast. (even though it took 5 weeks or so!) She is to be on it no more than 11 weeks (3 weeks full dosage, then taper 5 mg per week), and if she could handle it we would have her taper faster. Our next appointment is in 3 weeks.

Being on prednisone for surgery is not ideal but either is flaring so we have to see how it goes. Every 3-4 days she gets this one bowel movement that dumps a ton of blood out in the toilet. Something is still happening so I can't imagine why we would not proceed. This bloody bowel movement is red color (not dark so I know it is lower in her colon) & comes with a solid (but soft) stool. All the rest of her bowel movements are formed solid, & soft. Anyone else have this before?
 
Ugh, that sucks she isn't doing well and has to be on prednisone. Any ideas on the timing of surgery? Though I'm guessing it depends on how she is doing, if you can afford to wait or not. Sending good thoughts your way.
 
Thanks for the update SupportiveMom. :ghug:

Such a difficult time for you hun. I hope you soon have answers one way or the other as the waiting and wondering surely does take its toll. :(

Dusty. xxx
 
Thanks. It is this fine line of health we walk with our kids. It is exhausting. I don't want to wave the flag at the hospital IBD clinic because she has been worse, but I'm afraid of how worse she can get once we taper more. I won't let her go below 15 mg if she is like this still. But maybe it will all just subside? She isn't at the top of the surgery list, with worse cases filling the hospital & I hate being squeaky wheel. what if this subsides & she can make it if I just give it time? Oh this will drive me crazy. no wonder I don't sleep...
 
It is so hard not to be thinking the way you are mum. :ghug: When we have seen our kids at their worst it is little wonder we never want them to go back to that place again, it is just too heartbreaking. In the meantime our thoughts and imagination run rampant and are easily our worst enemy when we least them to be. :ghug:

:hang: mum! You are doing a fab job and our thoughts are with you. :heart:

Dusty. xxx
 
Thanks everyone for the support! It means a lot.

Scope now moved to Friday April 24th & surgeon appointment on the 28th. I hope he plans on giving us the surgery date at that appointment. I hate not being able to plan anything because that will need lots of recovery time.

This is her 1st prep for colonoscopy as an outpatient. Any tips or tricks? It is an afternoon appt. so it will be a long day I'm sure.
 
It would be easier to plan with a date for sure. Scope prep, ugh. Softest TP you can buy, tablet, or some sort of electronic for the bathroom, maybe with movies or games. Don't wipe, dab. Which prep is she doing?
 
Tucks wipes or any kind of flushable wet wipe always helps with me as far as sensitivity when going so much. Which prep is she taking? I always drank mine through a straw and chased it with sprite to help with the taste.
 
I will buy her a big bottle of ginger ale & nice toilet paper. We always bring the computer & tablet. Maybe I should get some artist pencils and sketch pad for drawing. It will be a long day. Surprised she starts the prep the day before when she scopes at 3 pm. We have only ever done it 12 hrs before or sooner. Guess you can't be too careful.
 
For O preps at home were infinitely easier than inpatient. More comfortable etc. We have also had an afternoon prep time and still started the day prior. The only thing the afternoon time changed was the NPO cut off time.

Good Luck!
 
Yeah even for 2 PM appt I always get the same instructions, just midnight NPO vs 2AM NPO. Glad she is doing one she has done before, nice to know what to expect. Sketching stuff might be nice for the end period of 'feeling sucky but not 100% tied to the washroom'.
 
For the 1st time in all of this I am asking my mom to come with me to the scope. My mom is a "hands off" type of parent but I really am feeling a need for extra support for this appointment. I don't know why this time I feel like I need it. My husband on most days "can't deal" with this stuff, and his choice to be uneducated about where D is with this disease and choosing not to step up in making decisions has gotten me down. D decided last September she doesn't want him at appointments anymore cause he starts talking about things that don't matter and have answers to at least a year or more. I'm not sure if I'm asking for more trouble with my mom to come or it will make things worse.
 
One tip I recommend is the cranberry pico salax. I prefer the cranberry flavoured Pico compared with the orange. Costco was the only place around here that carried that flavour.

A small tube of diaper cream may help at the end of the prep.
 
If your mom can lend some extra support then I see no harm in having her there. I can't imagine being the only involved parent for D. My dad (I'm an adult) is rather hands off. We don't really talk about it and he just drops me off for appointments. I know that's hard on my mom being the only one, you are not alone in that I suspect.
 
Very sorry to hear your husband is not supportive in this. I think some people just get overwhelmed with medical stuff and they shut down and so say inappropriate things. Hopefully your Mom will be able to be a support for you. Wishing her luck with the scopes!
 
My husband is in support of what is happening, just shuts down and flees when the tough decisions happen. You hit it on the head with overwhelmed. He can handle picking up meds & always remembering to have good toilet paper in the house, but ask him to participate in the decision of surgery or changing of a medication he turns to mush and says "whatever you think". Finally I am learning to use him for his strengths. I just hope my mom can fill in the gaps. Not holding my breath but thinking positively!
 
I understand, believe me I understand about the mom thing.:wink:

Can you talk to your mom before hand and tell her why you really want her there.
Explain it's not for criticism but support and a sounding board.
I would opt not to have my mom come if she wouldn't say she could do these things or make you believe it.
Like I said, I understand the mom thing.
 
Good idea Farmwife. Actually I just want her there to verify to me what the docs say in case I go numb if they same something scary. If she criticizes I think D will lose it on her grandma herself!

Now how to have the conversation tactfully...
 
:lol: D sounds like my daughter. M was recently inpatient and the attending GI told his entire team they wouldn't be waking her up for rounds because he was afraid M would punch him if he did!

Good luck SupportiveMom, thinking of you and D.
 
On Maya D & M sound like 2 peas in a pod. D was angry with her GI but was so mad she couldn't come up with words to say tactfully so she kept her mouth shut. Afterwards I encouraged her to write a letter to her we would never give her to let her emotions out. Oh boy if her GI saw it she would drop her as a patient or at least not help much. She said things like " you asked me why it is I think I got sicker. You are the one with all the medical degrees and you have to ask me? I shouldn't have to do your job, try doing your own job and get me better!"

I guess kids get hardened pretty quick dealing with this.
 
Our poor kids :( Poor D. She's been through so much, no wonder she's mad. We have a lot of "why don't I get better when my sister and dad got better" here. It's so tough.
 
Dads always just want to fix things, I think, and IBD isn't "fixable". My DH is similar. He needs tasks that he can accomplish and be done with like picking up meds, paying bills, washing out the puke bucket. I just go with it.

Maybe you can ask your mom to simply take notes? Tell her you want to focus on the info as it comes, but if she could take notes for you that would be wonderful. She'd also be so busy taking notes that she might not have enough time to think of questions or interrupt. KWIM?
 
I give you credit. I am too much of a control freak to let DH have a say in anything:redface: I don't even want him to come to scopes, appointments and such now because he muddies the water. The doc and I have been together for 3 years, we have our own shorthand, catching him up will just slow us down. Love him to death and like you say he has his own strengths but there is a clear division of labor in our home. He is just too busy with work to have the time to research the way I do so it is better to let him off the hook also. Besides, he would just do whatever the doc said, no questions asked.
 
I will let my hubby come to 1-2 appointments a year, but he knows the rules, sit and listen. Questions are pre-screened by me cause if he asks something I already know answers to I don't want to lose time with the doctor (boy I just realized I sound mean, I swear I'm not!). When I was the one that had to make the choice to move to Remicade & he couldn't deal with it this is how we established our roles. It actually affects D's role with her Dad in a negative way & she is normally the one that says she doesn't want him to come.

I am normally a control freak. Since October when we canceled the surgery I have been holding my breath waiting for where we are now, surgery, cause I knew it was coming sooner or later. In all the ups and downs of this IBD ride this part has been the scariest for me. It took me quite a bit to get over this feeling like I failed because all that I did. (I know irrational thought but still had to get through it). I think that is why I'm looking for that support person. I envy those couples that get through this together by each others side. My controlling side would probably never let it happen though.
 

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