My 4 month hiatus & D's changes in health

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Hang in there SupportiveMom :ghug:

Both my girls don't want Dad at appointments even though he has AS like them. M definitely would NEVER talk about GI stuff in front of him either. I think this must be pretty common with teenage girls.
I catch him up after appointments, but I'm the one that does the research.
 
This will sound strange, but I figure if anyone understands this you all will. The last few weeks leading up to D's scope I have been hoping the prednisone helps heal her enough for symptoms to subside, but not too much that the scope doesn't show what needs to be cut away clearly. Since she started to taper prednisone she has been reduce to 4 a day bowel movements, no blood. Now down to 10 mg, Thursday she found her 1st blood back in her stool, but has only happened 2 xs. Yesterday she went 8x. Granted she has her period, but doubling bowel trips because of her period is odd, even for her. Must be inflammation coming back. The next few days will tell.

Now I am upset, and slightly relieved because the scope is Friday. Mostly upset though. Did I jinx myself?
 
I totally understand that thinking. I've got a similar thought process going on this week too, related to Remicade dosing. Hope your daughter's scope prep and scope go smoothly this week, and that you get the answers you need to move forward.
 
I can totally sympathize!! R has his scopes in 2 weeks and I feel the same way. I want him to feel better and the scopes to show improvement over February's but at the same time I want them to correlate with his worsening symptoms so we can figure out how to help him. I hope that yours go smoothly and help you make the necessary decisions to move forward with D's surgery.
 
Ugh. It's a lose-lose scenario. You want to "see" that there is something so you can do something about it, but at the same time you want healing because healing is good. Both frustrating. Hope scope goes well ( and prep is survivable, I won't say well).
 
D had her Simponi on Thursday. She normally gets a bit of a boost to feel better afterwards for a few days. This time no boost. Looks like Simponi could be coming to an end sooner than I thought. That could lead to inflammation returning. Stinks there is no antibodies test for Simponi.
 
Last night was horrid. Up 3x last night! Neither of us was awake enough to check for blood. She is supposed to taper to 5 mg prednisone Thursday. I don't think I will continue the taper. I'm almost tempted to increase it but will wait it out. I'm going to send an email to her nurse. I have no idea if we will even see her doc for the scope (last time it was some doctor I had never met, got to love a teaching hospital!) So I want to have direction for the weekend after the scope. Maybe I'm jumping the gun, a bad 24 hrs, but I don't want to see her tank fast. At least she hasn't lost weight yet!
 
Ugh that sucks. I agree on not tapering and letting the nurse know. Hopefully it is just a blip but it isn't worth her getting even worse to go down a bit on the pred.
 
My girl is so amazing. As of noon has already gone 8 x, still dragged herself to school so she could participate in Earth Day events today. I told her to stay home she wouldn't have it. Hopefully the half day of school doesn't exhaust her too much. Blood is definitely back. She had it 2x so far. Tomorrow starts low residue diet for colonoscopy /endoscopy prep.

I got a reminder on facebook to look at memories from previous posts on this day in years past. Last april she was admitted & the year before. April is not a good month for her. Wonder why...
 
Sorry things are getting worse. Really hope the scopes go okay and they can come up with a plan to help quickly
 
Sorry things are getting worse. We have seen a pattern with a certain time of year being the worst. For us it is September. I have heard this from a lot of other parents as well.
 
April is M's worst month too. She was admitted this year and last in April. Weird.

Way to go D for getting to school! Hope they can get her feeling better SOON!
 
Our GI said the that in her practice the danger time appears to be September/October/November.

This is the end of the school year and the beginning of our spring. This may point to Vitamin D playing a role for some patients.
 
Catherine you may be onto something. it is our spring here now and this winter has made it tough to get any vitamin D. Wonder if there is a study about this?
 
Lots of studies in vitamin D and inflammation plus seasonal
Component to inflammatory diseases .
DS takes 2000 IU a day to keep up
 
MLP I didn't know about seasonal studies. I will search.

I am worried about tapering any further on prednisone. she is at 10 mg and now consistently back at 8x a day, blood 1-2 times a day. I want her off prednisone but know if I do its just going to get worse. sent an email off to the nurse yesterday. hope I get a response today or I will be calling. Pico Salax tomorrow afternoon means she will be going even more and it will be hard to tell what's the crohns and what's the pico.

I now don't have to worry about my mom not offering the right support coming to the scope. She cancelled on me last night. Something about a sick puppy (my parents are breeders). It is probably for the better. She still believes surgery isn't the right choice. She also has NO idea how bad D is because she prefers to wear blinders. Looks like I'm on my own again!
 
Sounds like a blessing in disguise re: your mom.

Can you record the meeting so you can reference it later? Might be easier than taking notes.
 
I'm sorry about your mom but agree it might be a blessing in disguise.
Recording it might be a great idea.

HUGS
 
Yeah, we're Aug/Sep (usually correlates to wildfires and smoke filled air) and Dec/Jan (inversion time no sun and yucky smoke filled air from fireplaces).
 
Sigmoid colon & rectum... they have to go. Finally know what we are looking at for what needs to go, but of course a Fellow did the scope, has no idea what that means for surgery. I had to educate her since she was saying things like, "have you considered rectal therapies?" HA HA HA cortifoam, steroid enemas, been there, done that!

So the million dollar question is, permanent ostomy or temporary ostomy?

Based upon the notes I can see her GI is really banking on her having UC now & not crohns. The last testing we had they had her diagnosis listed as Crohn's Colitis. This time she has listed " UC/?" At first this bothered me, but I thought back on the last 2.5 years since diagnosis and realize they have listed her as every spectrum. Why would they finally settle on which it is now? Sometimes I think they really have no clue.
 
I can't imagine how frustrating it would be not to have a firm diagnosis. When you do you see GI or Surgeon to make some decisions?
 
I actually think the spectrum of only 3 types of IBD aren't enough. As research gets better I think they will expand it. Meds are the same treatment is the same, surgery success is the only part that makes the difference. Switching her to UC diagnosis on the form could not necessarily change her diagnosis, and I have heard many a UC patient have surgery and down the road have their diagnosis switched to CD. I'm still banking on Crohns Colitis (crohns limited to her colon) as her diagnosis. Her inflammation in her esophagus & pancreas 2.5 years ago I won't ignore. Hope it never happens again but no guarantees. May 12 for review of surgery steps with GI & surgeon.
 
Glad you have a partial lpn
Hopefully surgery will bring much needed relief.
Agree there are way more than three types of Ibd
DS is another kid that doesn't fit well
 
about rectal therapies:
http://www.ncbi.nlm.nih.gov/pubmed/?term=ulcerative+colitis+curcumine+enemas

and this is the response I go about a month ago by the pharmaceutical company located in India who produced the enemas for the study:

'' RCT on NCB 02 has evoked an excellent response.
The product is yet to be launched for clinical practice. I do not have any samples to share now.
We will be launching this product soon along with oral formulation. This, we believe , will be a practicable solution to patients of IBD .''

Let me know if you want the contact information.
 
I dont have any more info unfortunately, this was the response I got from the pharmaceutical company. Soon to be on the market... excatly when, I dont know, but since they are located in India, this is the kind of treatment we will most likely individually have to break barriers to get. Doctors here wont likely know about this treatment for a long long time...just like another treatment offred for UC in Japan since many years which I talked about in the reseacrh section of the forum. I intend to get those enemas if I flare on purinethol.
 
Biopsies came back today. Nurse contacted me to ask to push the meeting back from the 12th to the 14th because the team needs to review and discuss.

Should I be worried? They took biopsies throughout, we know the inflammation is in sigmoid colon & rectum. There was a concern about the level of mucous in her stomach but I didn't give it much concern. Ugh! A week to review with the team?
 
That's a good thing so they can talk through the options
Better than bring the kiddo in tonight for surgery Friday .

My oldest had lots of extra mucus in duodendum ( non Ibd kiddo ) - lactose intolerance was the problem .

Good luck
 
I know d is lactose intolerant. She doesn't eat dairy except for rare occasions with lactose pills. How long ago had your nonIBD kid had dairy before the scope?
 
Thanks. I know mucus is supposed to be your body's response to inflammation. She was at the tail of the flare at time of scope but it seems this flare isn't completely ending like her last one, even on her low dose of prednisone the doc refuses to take her off of. I get it because I think if she tapers completely her flare will come back full force.

I guess I should be glad they want the extra time to review instead of rushing through it.
 
I don't think the wait is necessarily bad news. It could be that the team just couldn't find a common meeting time until after the 12th. (I totally understand your concern, however, and I hate waiting for test results and decisions!) Hope that your daughter feels well while you wait.
 
Thank you Dusty Kat for reminding me how to be a mama bear with the chaos you went through recently. I had to evoke your mama bear energy when the moved our appointment twice. 1 time for a delay of 2 days I can manage, but then try to push me off another week? You crazy? Nurse called at 6 pm to cancel our 8 am appt. Something 'Came up and could I do next week?' I told her I will be moved a few hours but certainly not more than that. Bump someone else! After a few emails and calls they moved us to today at 11.

We were going with the assumption that D's sigmoid colon could be removed and she could have a resection. 8" wouldn't be bad to remove and we could maybe skip the temp ostomy. Biopsies I now understand can be so much more important. Disease present just not inflammation in transverse colon & ascending colon. Whole colon is going.

Doc thinks she has an ostomy for sure for a year. She suspects it will be permanent. They will examine the other layers of her colon after removal and decide then. Surgeon & Ostomy Nurse appointment June 4. We see the GI right after. Being in the hospital setting helps to have it all in one place.

Now I guess it is finally time to check out all the appliances and stuff. This is the one area I have been ignoring. I was hoping I could skip learning the part.

Hubby did end up going to the appointment too. I was amazed at how calm he was and he asked good questions. There may be hope for him yet.

Meds...sticking with what she is on for now. Entyvio is released on the 19th. Then the GI will start the fight of compassionate care for kids. She says it is at least 60 days away at minimum. Tacamonium was discussed as a brief option, but max of 3 months. That would mean coming off Simponi & that I don't want to do unless there is another biologic she can go to. Hard to go back on a biologic once you stop it. Hope Entyvio can move through Health Canada regulations quickly for kids.

Booking her with the child psycologist in hospital. D needs it. I think I might need someone too. I'm normally the strong one. I'm a basket case.
 
Oh, what a hard meeting. I'm so sorry. I would be a basket case too. I know it's small consolation, but maybe with this surgery your daughter can go back to feeling like she did during her short time of remission last year, and be free of pain, and not running to the bathroom every minute, and just able to live her life again. I know that doesn't make it easy for your daughter or family, though. It's good that you are booking with the psychologist; this is a lot for a anyone to handle. :ghug:
 
:frown:

I know you were thinking it might be good to go to surgery to get some lasting relief for her, but I can't imagine how hard it is to go from thinking smaller resection to whole colon.

Just thinking of you both.

Hope there is a lot of wisdom from those parents that have been there.
 
Thinking of you and D:ghug:.

Hope she gets a very very very long remission from this surgery.
Glad she can stay on Simponi since it helped a little- hopefully it will work like MAGIC after the surgery.
 
Oh my goodness SupportiveMom, little wonder you are feeling the way you are! :ghug::ghug::ghug:

I so hope this surgery gives your lass long and lasting relief bless her. :heart:

Thinking of you and sending you much luck, squishy hugs and healing thoughts your way.

Dusty. xxx
 
So sorry things are so stressful. Really hope the surgery works wonders and they can sort out the medications.
 
I was so sorry to read your post. :( I wish the apptmt had had a better outcome. :ghug:

And, as others have said, I do hope the meds and surgery will bring you all many years of remission!!

And do find someone to talk to yourself! What you've been through over the past months/years has been overwhelming - I'm sure it would help you to have a person and place to vent. Perhaps the hospital can provide you with some recommendations??

Hugs... :ghug:
 
The last few days gave us some good perspective. D is leaning on her best friend who has IBS & her mom is a nurse who has Crohns. I'm glad she has them. Hubby & I have been leaning on each other more than usual. We are pretty independent people and know it's time to lean on each other. A few days we were able to change our perspective to think of how life will get better after the colectomy after healing and getting used to the ileostomy.

At the appointment Thursday we asked for a connection to another teen with an ostomy or a support group. The nurse & GI at the hospital clinic didn't know of a meeting and no one came to mind for D to connect to of her own age with an ostomy. Later I found out there was a meeting for 10-18 year Olds with Ostomy on the floor right above the IBD clinic! I found out too late so we have to wait for a meeting in July. Why is there not one place to go to know this stuff? Maybe this is my next mission, get all the meeting group info and fax it to every GI doc so they can post it, and share it. So frustrating, I'm in Toronto, MAJOR north American city, think it is 4th or 5th largest in North America and I'm having to hunt for this stuff? Why do I need to search 10 different places? Thank goodness I am the type to keep looking.

This might become my new pet project.
 
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Thanks. I will share it with the GI on june 4. After surgery I want to get her in remission as long as possible so meds are important!
 
Getting ancy about tomorrow's meeting (6/4). I can feel the tension in the house. The surgeon meeting is the one I have been drawing up questions. Really hoping it goes smoothly.

I think its going to feel very real when the stoma nurse shows her the Ostomy bags and how they look on her. We were told to request a sample to wear around to get comfortable with it. Something new to learn!
 
Boy I felt like that went by in a blur. We had a lot to digest. Surgery is July 15. A few appointments before to do including her IBD therapist. We got a sample bag to try wearing to get used to it.

No one cried the entire 3 appointments! We might get through this better than we thought.

2 stages of surgery though. They want to do the subtotal colectomy & leave the rectum, then go in 6 months later & see if they don't have to remove it. If she can keep it, then she stays with the 1 surgery.
 
Haven't been on as much lately so trying to catch up on how everyone is doing. Glad appointment went well and hope surgery brings her some much needed relief.
 
Pre anesthesia appointment today. Think I cried for 1/2 of it. Even when you know this is the best choice it is still hard. It really sucks our kids have to deal with this. Us parents are quite a strong bunch.

Still, I am scared out of my mind this is happening to my kid. How could someone wait 3 months for the surgery? 40 days from appt. to surgery is hard enough. We just have 3 weeks to go. It seems as if we are trying to squeeze all of summer in these 3 weeks.
 
I tried to press the hug button ten times. Didn't work. Well, it worked the first time, but not the next 9.

I hope the weather holds out and there are lots of good memories of this summer both before and after surgery.
 
Thanks. I am grateful she is well enough to enjoy some summer. She is trying to fit in some swimming. Me, I'm getting her to fit in cleaning her room!
 
Sending hugs and thinking of you. I hope she has the best few weeks before the surgery!!
 
How did she do during the appt? So sorry you all have to go through this. I hate this disease so much.
 
Good luck with the room cleaning! :lol:

And, lots of hugs... I can't imagine how hard this is for D, you and your family. :ghug:
 
She has a good mask at appointments. She waits until she leaves them & cries. I told her no need to hold back but its like she is proving something to herself. She is happy about the morphine. Someone told her they don't give anything harder than Tylenol 3 for surgery and she knew that wouldn't be enough. She is worried about the pain most of all I think.

I stay with her the entire time in hospital so if it isn't clean before it isn't getting done! Yesterday she convinced the boyfriend to help. I was shocked. He may be worth keeping for a bit!
 
I remember one of my teen guys bringing the girlfriend over - and I asked her to make him clean his room. It worked. I was sad when the relationship ended.

I'm glad she has a peer to help her through this emotional and stressful time. If he makes it through these rough patches - they may be seriously bonded.

Sounds like the more facts she gets about her procedure the better.
 
I'm just so sorry to hear about your struggles - I can only imagine the pain you're feeling and my heart goes out to you and your daughter. I am praying that you both get some peace and respite after the surgery. This disease just completely sucks in the most unimaginable ways. All my best thoughts your way as you go through this.
 
So sorry to hear your news. This disease totally sucks and waiting sucks too! I hope you are really able to make the most of it all. Sending loads of thoughts and prayers your way!
 
Last night the bestie & boyfriend were over and we were talking "game plan" for surgery day the night before, the day of, and the few following days after regarding visitors, who can be where the day of surgery, etc. I am impressed the boyfriend just wanted to know how he can help, when he can visit, and anything he can learn to make things easier.

I don't want to scare off the boy, but learning about an ostomy, having major surgery is a lot for anyone at any age. How much do we share with him? Best to do as it comes, or dump a bunch of knowledge on him?
 
SupportiveMom - that's so impressive! If we're counting blessings at a time like this, I guess one of them has to be how lucky your daughter is to have such a good support system :)

On the ostomy info, could you give him like three main pieces of info (the stuff that he needs to know, or you want him to know now), then maybe text him links to a few other resources for further reading? That could give him the chance to be prepared, but not overwhelmed all at once. You're right - it is a lot to take in. You're being very thoughtful and I'm sure both he and your daughter appreciates that alot!
 
I think I might ask him what he already knows. I wouldn't be surprised if he's already watched YouTube and done his own research. Then, I'd just steer him to the trustworthy sites and steer clear of the personal (negative) blogs - if he wants more information.

How long has he been hanging around? I'm guessing even if the boyfriend bit doesn't last, your daughter will always have him as a friend.
 
The boyfriend has been a friend for a year. Her boyfriend for 3 months. So he knows what's happened the last year with her health but at a distance. Good idea with links & blogs. Over a year ago I watched some YouTube videos that scared the daylights out of me. Hope that isn't what he has seen!
 
Maybe give him the links to some of the models who have shown off their ostomies and talked about it. There were two that I saw a while ago someone had posted it on another site. I am sure if you google it or search you tube you can find it. I agree about asking him what does he know already. It is great to have a supportive boyfriend. Caitlyn also has a wonderful and very supportive boyfriend.
 
We went for our final blood work, drew on the stoma spot, got our last bit of pre surgery questions answered yesterday. When sent down to blood work I had to take her surgery papers. They had on the paper reason for surgery: ulcerative colitis. Either her doctor is extremely stupid or it is wishful thinking. D just looked at it & laughed. It kind of pissed me off, but I know it doesn't change much. Just because she hasn't had inflammation in her small bowel in almost 2 years, but she still had it. That means Crohn's. Still glad surgeon thinks of this as a permanent surgery and won't recommend even considering a jpouch for 10 years. D would certainly be one of those that had issues I am sure of it if she rushed for a jpouch.
 
Thought I would share a pic. Not a guarantee this is where it will end up, but this is what the plan is. She had written next to it "Go at it" but afterwards she felt stupid about it so rubbed it off. Hope the image shows up here. THis is the 1st time I put up a picture.

naUhz-1G.jpg
 
Awww she should have kept it.:thumleft:

I pray everything goes smoothly.
Update when you can.
When is the day off surgery?
 
Sending lots of hugs and good wishes! :ghug: Hope all goes smoothly and she recovers quickly. :ghug:
 
Wednesday is the date. 8 am at Sickkids. Arrival for 6 am. I live about a 40 minute drive or 1 hr subway/bus ride from the hospital. Glad I am staying downtown nearby, just a 10 minute streetcar ride. At that hour will opt for taxi I think. We are doing a girlie night tomorrow night downtown with her sister, aunt, & 2 friends. I hope it distracts her. She has been an angry young lady with a short temper today. Hard not to strangle her. PMS is also not helping.

Oh I just realized she will be menstruating during surgery! Hope that won't complicate things.
 
Hope tomorrow evening is fun and distracting for all, and that the surgery goes well. We'll be thinking of you and your daughter.
 

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