Our Simponi Journey for my Kid

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SupportiveMom

SupportiveMom

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Since I have not found so far any children taking Simponi (golimumab) for Crohns I thought I would start a thread to chronical our journey. Tonight D is getting her 1st loading dosage. Her prescription is 200 ml at week 0, 100 ml week 2, 100 ml week 4, and from then on 100 ml every 2 weeks. She is at 7-10 bowel trips a day. No blood but pain level is a 6 she says. We are nervous because we haven't heard of others experience. So if your kid starts this med for crohns you aren't alone!
 
Good luck! I hope the shot is as easy for her as it was for my daughter!
 
Thanks everyone for the encouraging words.

As many of you know D has tried Remicade & Humira without success (Remicade actually made her worse). The new GI, Dr. Griffiths (which is amazing btw, and is head of the IBD department at SickKids so I know I can't get any higher than that!) reviewed her time period on all the meds. Bases upon the different responses to the meds that we tried and the slides from the biopsies at both of her colonoscopies & MRE's there are 3 options left before surgery, 1 is Stelara, which based upon her history she wasn't strongly positive it would work. The 2nd is Simponi which she is now taking. It is her 3rd Anti-TNF and the doc's history with Simponi in similar kids in D's position has been positive. It is our best shot at this time.

Her dosages are aggressive and she should see change quickly, and will know if it has potential to work within a month.

The last option is a combination of 4 antibiotics. Because of D's allergy to medications this does come with a large risk and not as high of a chance to work as they have to replace one of the meds and find an alternative.

We have a scheduled surgery consult for October. We are waiting for a date for the pill cam and she may want to do a scope herself as it her previous GI that has done them before.

The nurse that came tonight told me he has taught 2 children on this drug for IBD. One was 18, the other 6-7 years old. So I know she isn't alone.
 
I should add Stelara was taken off the table. I am receiving conflicting reasons why. Nurse told me insurance would refuse it because of D's anyphlaxis reaction to Remicade. The insurance said the request was withdrawn. When I have the next appointment I will ask why.
 
How did the shot go?

Keeping my fingers crossed for D! I hope this is her miracle drug!
 
She was Amazing!! The nurse did the 1st auto injector pen (100 ml). She did the second. Maya you were so right, much much better than Humira re:pain.
 
That's great! I'm so very glad, S said the same. She said every time she does her Humira shot (she switched a while ago) she thinks about how little Simponi hurt. I wish we had increased the dose of Simponi before giving up on it though.

We are seriously considering Simponi for M, and she really liked the idea that it wouldn't hurt.
 
If this is the drug that works for her it is great to feel like she will be able to manage this on her own with complete independence. Humira definitely didn't give her that. She teased I would have to come to university to give her injections if she was still on Humira. She is a bit groggy this morning but no rash or other issues.
 
New symptom either related to Simponi or to her other meds, or an combo of them all. Her hands shake, like tremors. She can't hold her hands out without them shaking. Noticed it at dinner last night. Hope it settles for her. She says it is annoying writing in school.
 
Week 1- hand shaking not as bad but now back to waking up every night 1-2x for the bathroom. Still going between 7-10x. Next week is the next dosage so I hope she is just sliding because Humira is now out of her system and not enough Simponi is in. Crossing fingers. She is starting to get discouraged already.
 
So it's just a few days before next dosage. Last two days she has spit up a bit in the morning. This symptom disappeared for her as of feb/March. I hope this stops very soon. If this becomes the new routine again she will drop weight rapidly again. She is back to only eating soups and crackers and rice & bread in hopes to calm things down.

She has a youth group trip on friday-Sunday to Cleveland and refuses to stay home. They are staying in a camp so she won't be far from a bathroom but I don't get how she will have much fun or have energy. To her own benefit or detriment she isn't giving up and is trying to stay as normal as possible. I am in awe of her strength.
 
Well yesterday was my tipping point. I have snapped. I normally keep things pretty close to the chest but yesterday & last night I lost it.

Emailed the IBD nurse at the hospital to follow up with the next appointments & surgery consult dates and "casually" mentioned no change since starting Simponi and should I have seen a change yet. As I stated before D's symptoms are coming back stronger (but when I emailed the nurse I didn't know how much worse). She was very attentive, called after emailing me, and said she should have seen some improvement already but it isn't time to give up on the drug yet. Staying on the Simponi we are starting the antibiotic cocktail as of Sunday.

The regimen consists of metronidazole, doxycycline, and vancomycin. It normally includes amoxyicillin but D is allergic to penicillin. It is a mega dosage of these 3 taken simultaneously for 3 weeks. We should see results in a week. The doctor even called me to explain some things to me about it right before I headed into the subway station. I just fell to the stairs in the middle of the city during rush hour and sat on the steps crying on the phone. I know this is the last step before surgery.

I am worried about her catching c diff as this will strip all the flora out of her gut. I am worried because it is cold & flu season and she will have nothing to fight off anything. I am scared. Scared for her, scared for how I stay strong for her, and scared for what this may mean in her future.

When I got home it just had to happen - fight between her & her dad that got pretty heated. It got so heated that she was screaming at him about how he didn't believe her at the beginning of getting sick (I thought they worked it out but she is still angry) and how he doesn't 'get' what is going on with her. Through her tears and screaming she explained how bad the pain is back, how she is actually going 10x on a good day, and probably closer to 15x, and how she is not sleeping due to her meds & the pain.

We just don't talk about the mental anguish we & our kids go through with this disease. I am digging deeper than I ever have to find the strength for the next few months. Belief is running thin. She is off with her sister for a synagogue retreat with her peers. She feels like crap but I know mentally this is where she needs to be. She is surrounded by people that know what is happening & will be there to help. Keeping her home will do worse to her emotionally than the exhaustion she will feel trying to participate. Me... I am going to spend the weekend finding the strength for the road ahead I knew we were going on that I have been trying to find the exit for. I really want to get off this road.
 
I'm sorry she isn't improving on the Simponi. I hope more time will help but I can appreciate how discouraging and terrifying it has to be to watch symptoms return with strong intensity. Your daughter should not have to to deal with these challenges, and her anger is valid. I wish I could offer more. The uncertainties and fears are very difficult with IBD.
 
I'm so sorry you are all dealing with so many struggles and so much heartbreak. I don't think there is anything harder than watching your child suffer. :ghug:

I hope the current treatment will help and you can avoid surgery! My aunt went through two years of difficulties, pain, urgency, etc. but they eventually found what worked for her and she has been great for 15+ years (if not more!). I really hope Dani finds this soon!

If, surgery is needed, there are also lots of success stories following surgery. Try to remember that this 'last' choice, may be just what takes her into remission!

Almost impossible to do but try to take one day at a time, sometimes one hour at a time!

Lots of hugs! :ghug: :ghug:
 
What an awful and scary situation. We're all thinking of you and D. I hope Simponi and the antibiotics work SOON and you can avoid surgery. This is one of the most frustrating diseases, you never know when things will change and nothing is in your control. It must be so heartbreaking to watch her symptoms come back.

I'm surprised they told you Simponi would work soon - we were told it could work on the first dose, or at 4 weeks, or 6 weeks, but by 2 months we should know.

Is there anything they can give her for pain? Tramadol? It might even slow down the diarrhea (it causes constipation for most people).

I wish I could say more to help. IBD just sucks.
Sending HUGS!
 
She has semi solid stool. She is just still going a lot. She is very cautious about pain pills and hates the loopy feeling she gets. It is the exhaustion she can't take.

I know your daughter is taking simponi for something else Maya, what was it for? What is the dosage? D takes the 100 needle biweekly. I don't think the Doc was expecting her to get better quickly but expected some results. There is no reaction at all, if anything she is slipping worse. She is staying with Simponi with this antibiotics cocktail. If she does have her colon removed she will still need maintenance drugs and if she gets some results from it I would think that would be the drug we stick with. Honestly though I only found 1 kid on Simponi for Crohns and he is not good and wound up in the hospital a few weeks ago.

I have barely moved off the couch I am exhausted. I don't know how I would do this if it was me with crohns.
 
S was taking 50mg every 3 weeks and then 50mg every 2 weeks. She was taking it for Ankylosing Spondylitis and it worked quite well for a while.

With M, we talked about doing 100mg every 3 weeks (after the loading dose).

I don't know any kids with Crohn's on it, but I have met quite a few parents who have kids with Juvenile Arthritis on it, and those kids are mostly doing well. An adult GI a Mount Sinai said that she had patients with Crohn's on it and they were doing well -- she was the one who initially suggested that Simponi might be an option for M.
 
Glad to hear of the happy stories. It is hard when you are on the front of the new meds to find success stories. In all fairness D has never responded to Anti-TNF so I'm not surprised this hasn't reacted yet. I'm heading to a meeting at Mount Sinai of Toronto end of the month and I'm going to see if anyone has any experience with it. D's doc wouldn't put her on a drug that has mostly bad results. I think I just haven't found the good stories yet. A friend of mine has just been suggested Simponi for her RA but she is an adult.

By the time the surgery consult is done D will be on Simponi 7 weeks. It should give us some idea by then if it will work. I am assuming the surgery won't be scheduled until probably late November so if things started working before then we can cancel surgery. If I can pick the date I'm going to try to push it to beginning of december to give her more time off of school. I'm told it hurts a bit walking up & down stairs and her school has a lot. I wouldn't want her rushing back unnecessarily.
 
Just wanted to post an update on the Simponi front - the 2nd treatment on Thursday went well. She actually did it in front of a few friends staying over. I was surprised. I think the girls felt a bit uncomfortable but D didn't care she didn't want to hide it.

No obvious difference before or after but I am glad Simponi doesn't hurt when injecting & no pain afterwards that she can go do the things she wants to do. Next needle on the 9th of October. For now we are sticking with 2 week intervals.

She starts the antibiotic treatment today so I really hope the side effects don't muddy up the results that is hard for us to tell what is the cause of what. Praying for no c diff from the antibiotics!
 
I'm sorry you haven't seen more of an improvement with Simponi. I was on it for several months and I can't remember how long it took for me to see results, but it wasn't immediate for sure. I was on the same dosing schedule as your daughter. I'm 34. I did see an improvement on it, but not enough to get me into remission.

I would press them about the Stelara next time you have an appointment. I really can't see the reaction to Remicade making a difference as they are two totally different drugs. Though there are probably even fewer kids on it than there are on Simponi.

Hopefully the combination of the anitbiotics and the Simponi will be enough to get her into remission.

Hang in there, you are doing an amazing job supporting your daughter.
 
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I've been on metronidazole on and off for years and it is a lot easier to take in capsule form. The tablets are very powdery and taste awful! It also makes me nauseous and decreases appetite. Just a head's up, as the antibiotics might make her feel pretty awful.
 
I have to agree - since D has never responded to an Anti-TNF, it would definitely be worth trying Stelara since it is supposed to work well in people who fail Anti-TNFs. That is why we are holding off on trying Stelara for M and would try Simponi or Cimzia first - since she initially did respond well to Anti-TNFs.

I haven't actually ever heard of anyone having a reaction to Stelara, but I've only met two adults on it (one for Crohn's, one for psoriatic arthritis).
 
I don't know if your daughter is on a probiotic. If she is not I would highly reccomend starting her on one. Hopefully might help prevent Cdiff or other issues with the antibiotics.
 
Cimzia - hmm.. another anti-TNF. With the allergic reaction she had to both penicillin & infliximab I doubt it would be a good idea for D. I also don't think she is responsive much to Anti-TNF. It also isn't approved for children here. Is it approved in the US for kids? I do have her on Florstor which our pharmacist along with the doc recommended so hopefully it can keep the gut able to manage. kimmy thanks for suggesting it!

Unfortunately they didn't give her the capsule of metro - she got the big chalky white pill. Hope she can manage to swallow without much of the aftertaste.

lgpcarter how long were you on Simponi? When did you see a difference? There was a brief discussion of moving Simponi to every 10 days but I don't think there is much push for it. I feel like we are flooding her body with meds already anyways. Any suggestions on keeping her feeling optimal on all of the antibiotics + all the other meds?

She is slipping back into 10-15 x a day now pretty consistently. Thank goodness for no blood, and semi solid stool but barely anything stays in her. I am surprised she is losing so slowly though. She is only losing about 1-2 lbs a week. Something tells me with the antibiotics she will start to lose more rapidly again.
 
Cimzia is not approved for kids yet in the US, it's in trials. But pediatric GIs (and rheumatologists) do prescribe it off-label.

I meant D should try Stelara since she doesn't respond to Anti-TNFs, it's supposed to work well for people who do not respond to Anti-TNFs.

I hope the antibiotics bring some relief for D.
 
http://www.ncbi.nlm.nih.gov/pubmed/24996483

In this real-life cohort of severe anti-TNF resistant CD, an initial clinical response to subcutaneous ustekinumab was observed in 73.7% of the patients. The initial response was successfully maintained in the majority of patients for up to 12months. Subcutaneous ustekinumab is an effective therapeutic option in this challenging patient cohort. The optimal dosing and injection schedule remain to be established in future studies.
Click to expand...
 
Just catching up on all the messages and sending lots of love and positive thoughts your way. You are a tremendous mum and your always so supportive of others. Some times we all need to have a good cry or a temper tantrum and that is completely fine. Good luck and fingers crossed.
 
Doc didn't like the way D has been reacting to the antibiotics so she asked us to come in. We are now scheduled for a colonoscopy in 2 weeks and will be doing a dummy cam to make sure the pill cam is likely to pass. If it passes we do the pill cam the next day. A few days after the colonoscopy is our surgery consult, expecting to discuss removing her colon. We are to expect having a bag for a year for sure. After that discussion can be made if there can be a resection / pull through but we were told to expect it to be permanent ostomy as there is no guarentee.

In the short term we are continuing with Simponi, hoping it kicks in within the next month. We have to up the prednisone to 20 mg to make her a bit more comfortable & hope it calms things down. After surgery we can try to decrease prednisone as it shopuld be able to manage getting off it then.

Regarding Stelara, which I didn't understand why it was a no, I was told today that if Simponi doesn't work then we know to give up on Anti TNF. She thinks Stelara will be her maintenance drug after surgery. Imuran we will wait to increase for now until she is at least off antibiotics. I do hope Simponi kicks in. I rather like the administering & no side effects at all so far.
 
Is she having an upper endoscopy as well as the lower?
Ours does both as standard.
If so they can just place the pill cam during the upper egd and be done the same day one less trip .

Wishing you the best in a rough time .
 
yes it is both top & bottom. standard here too. I requested a dummy pill to make sure she can pass it. That is being done at the endoscopy/ colonoscopy. Real camera has to come once she passes it the next day. Actually said they would put the dummy in while she is under so there is no issue swallowing since she is already under anyways. She said swallowing isn't normally that big of a deal.
 
I just want to jump in here in regards to treatment options. My daughter who is now 19 was diagnosed at age 12 and has been on every medication out there. Remicade, Humira, Cimzia, Pred, Methotrexate, 6mp, and prob every other med you can name. Anyway, when she was 17, during a colonoscopy, the doctor perforated her colon and she needed an emergency ileostomy. They didn't take out any of her colon or anything thank goodness, and she lived with the ileostomy for two years and it was not easy, but my daughter is a very strong girl and is very mature for her age because of having Crohn's disease. I wanted to to tell you that the medication that has put her in remission, and has allowed her to have her ileostomy reversed this summer was Stelara. Our insurance covered it and it has been a Godsend for my daughter. If you read the other threads on this board about Stelara you will read about it working for a lot of others also. I have never heard of anyone being on Simponi so was confused as to why your doctor would put her on this rather than Stelara with all of those antibiotics. I wanted to share this with you so you can hopefully avoid your daughter having surgery. I assure you it is very difficult at that age, so try everything you can to avoid having her colon removed if you can. Please let me know if you have any questions, as I would be happy to help!
 
We did the pillcam last year. M had no problem swallowing it.
I really hope Simponi kicks in and you can avoid the surgery. Will be thinking of D.
 
Thanks mug. If you have seen my posts through the years you will see how my kid's story has similarities but there is something that never fir quite right with just UC or CD. She has been flipped flopped with both diagnoses sat at indeterminate for a while and still we hover around it. The way she responds to meds fit the UC diagnosis but her MRE showed disease in small intestine & esophagus in the beginning of diagnosis. Last MRE & last scope show no disease in small intestine or esophagus. On top of it she has had allergic reaction to Remicade (not just antibodies, but actual anyphlaxis with a reaction similar to penicillin she had at 3 & had to be hospitalized.

We have been on the diagnosis, medication & treatment road for 2.5 years with barely relief of any sort. Still her good days hover at 7x a day, pain level 6. She has been as bad as 23x a day in massive pain, but most days hover around 9x a day pain a 6.

The problem with Stelara, or Simponi, or any other new drug that comes our way is it takes time to see if it can work. As we take the time to see if it works it makes D slide and get sicker again. The antibiotics treatment has merit, but works for only 50% of the Israelis that they tried it on. One positive is it works fairly quickly (weeks instead of months).

We have wrapped our head around surgery now and it has a better chance of giving her a life back than meds. I've come to grips with it and so has D. Surgery is no longer viewed as the last resort for us. It is viewed as the the best choice with what we have and is no longer that death sentence we used to think it was. An Ostomy is going to be tough to get used to, but if it means less pain, and less fight of a disease the meds have to do then we are ready. I know D is a champion, probably turn into an advocate like Jessica Grossman in her own way and rock a bag like it is the newest in the Prada collection. We aren't quitting and aren't saying IBD won by getting surgery. From what I'm hearing from ostomates life isnt so scary over there, and in most cases like ours, it is better over there. I'm not saying everyone should run out & get their own Prada Ostomy bag, but it is time for D and that's ok.
 
Maya one good thing that came out of our unscheduled meeting yesterday is the doc gave us clear answers. She finally came out and said her recommendation agrees with our first GI. It is time for surgery. I pushed her hard with what happens with the pill cam results and how does that change recommendations and she still says surgery. I'm scared. So is D. But for the 1st time we actually feel like we have hope. Hope is something we haven't had in over a year. I'll take it for now.
 
I absolutely can relate to what you are going through. My daughter has also had an unclear diagnosis....goes between UC and Crohn's. Her disease is all in her colon, but she has had fistulas also...weird. Anyway, she also had a reaction to Remicade during an infustion. Each med she has been on worked briefly except for Cimzia which didn't work at all probably because it's the same class of drugs as Remicade and Humira. Stelara works differently and she has had no side effects at all. After her last colonoscopy, her colon looked the best it ever has, which is why I am not sure why your doctor said no to trying the Stelara. We also make sure she watches what she eats now also. I am glad you are at peace with your decision to go ahead with surgery. It's so hard. With us, it was a life or death decision at that time of her ileostomy so we had no time to even think about it. While having it, yes she felt great and your daughter will too I am sure. Now it has been reversed, and she is happy and feeling really well on the Stelara, and I am so thankful for that. Best of luck on whichever path you choose! This disease is the worst, and so hard on our kids. I feel like I have been non-stop researching for the past 7 years as I have not always agreed with all of the doctors she has had, and feel WE are the best advocates for our kids!!
 
I hope D gets the relief she deserves from surgery. What a strong, brave girl! Will be thinking of you and your family, hope scopes go well.
 
I really hope it works out and am glad you made peace with the decision for surgery. Sometimes it just has to be done and is the only course of action. One thing that surprises me though is that the doctor is making the decision prior to the scopes and pill cam. I would definitely review those results with the doctor prior to to going through with the surgery. Those results could change the plans. Keep us posted.
 
Good point. I actually asked that same question. She is basing it off her last scope in March, her last MRE in April, her symptoms, and blood results. She says things might change slightly after the scope and cam but we aren't expecting much change as she has gotten worse. We have another consult with the doc after the surgeon, or maybe before, they are on the same day.

Having to go back up on the prednisone is not a good sign. So far after 3 days 5mg more isnt doing anything yet. I don't want her to go above 20 mg so I hope it kicks in soon.
 
Simponi on Thursday was a bit of a struggle. D is resisting doing the needle herself. Think her nerves are getting the best of her. After arguing & negotiation she finally did it. No changes yet but the antibiotics are confusing it a bit I think cause she still feels lousy.

So the scope that was planned is still happening but not quite the way I thought. Going to be admitted on Wednesday. Nurse said we will get the scope done & pill cam, sit down with the surgeon & stoma nurse. Nurse said to clear our thanksgiving schedule (Canadian Thanksgiving is on Columbus day, Oct 13) because if we can get the surgery in that weekend or beginning of the following week they would. Feeling scared!

I know this is what is needed but surgery in 1 week instead of 6... Kinda freaking out!
 
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Sending loads and loads and loads of luck and well wishes your way SupportiveMom. :ghug:

In both cases surgery was the only option for us. When I read of similar stories to your daughter's I realise that although I often wished, and sometimes still do wish, with all my heart that we had a far greater opportunity to go down the medication path that I in fact had it easier in many ways. It is far harder to make decisions when you have choices laid before you than when they are taken away. You have done wonderfully well to come this far mum without snapping more than once!

My kids never did end up needing a stoma and even though surgery was our first resort with Sarah and not far off with Matt it has been a godsend for them. It ended the pain, the suffering, the weight loss, the frequent unscheduled doctors visits and the hospital admissions. It gave them their lives back, their old and loved personalties shone through again, the energy returned as did the laughter.

I hope more than anything that your lass soon finds lasting relief, bless her. :heart:

Dusty. xxx
 
Thanks dusty. Logically I know this is what we need to get a life back. We have adapted so much to this life we don't even realize it. I lead part of the services yesterday and so wanted my daughter to see me & I know she was proud of me. Right as I went up she had to run to the bathroom to vomit and she missed me completely. We were both so sad. But this has been our life, and I can't take this anymore. D is done with this too. She feels like she has missed too much. This surgery has to give her life back ! Living like this for so long just is too much. Tough days ahead but I see just a touch of light at the end of this tunnel.
 
Hope the surgery calms things for you quickly .
Never easy to deal with but once she can function normally and has some relief .
So glad it's getting done quickly.
Much easier on you and her less time to think it over and over
 
I am so sorry she missed seeing you. Hopefully this surgery is the trick and Brings long lasting relief!
 
Our surgery wasn't like what D will have but I do understand the feeling of it being time. I do hope surgery brings relief and healing for her!
 
Sending you lots of good wishes!!! And prayers that this gets D soon feeling good and ready to take on all life has to offer!! Will be thinking of you! :ghug:
 
Boy do I hate waiting... my mind is evil and creates things that won't happen and I fixate on them. Today we are being admitted to the hospital. Should be this afternoon, just waiting for the bed to clear for her. Now I'm worried both D & I have cleared our schedules, mentally prepared for all of this & now what if there is some emergency for someone else that causes them to bump our room? It is highly unlikely that we would be bumped but my head will only go there. Grrrrr. D & I are ready to advocate in whatever way we can to push the surgery through now if for some reason they ask us to wait for a few weeks. We both don't want to have to go through these emotions all over again. Please let there be enough surgical time!

I have read all I can find on proctocolectomy & ileostomy & even IPAA in case something goes sideways and a jpouch is possible. D is ready she says. She doesn't want to learn the surgery stuff just the after care. Really hoping this can be laparoscopic.

Something I always had an issue with for Humira was getting it early if we were going away. My delivery of Simponi for the month was scheduled for delivery Tuesday. Because monday is a holiday here I called and told them what was going on. They bumped up delivery to today at my office (someone can sign for it for me). I had no wiggle room on Humira and couldn't get it even 3 days before schedule. Nice to be able to wiggle it almost a week early. Have to say I can't say enough positive things about the Simponi support people.
 
Good luck!! Will be thinking of you and sending wishes all goes smoothly. :ghug:
 
Sending so much good luck :hug: Hope everything goes smoothly.
 
Received the confirmation now from the nurse we are to check in at 3 pm today. Considering the lateness of admitting I assume nothing will happen until tomorrow. At least though we will be in.
 
Today has been a day of bowel rest and PICO drinking getting ready for the scopes & dummy pill cam tomorrow. Actual pill cam on Tuesday so we are here until at least then. Still going to push through surgery best we can. No guarantees we are told to have it Wednesday. But we have a few key people pushing for us. I hope it is enough.

They said the dummy pill cam only takes 4 hrs to pass. Wonder if that will be true for D.
 
Good luck! It took my daughter much longer than 4 hours - I think it was 12 - to pass the dummy pill. Hope everything goes well.
 
Sending much love and positive thoughts your way. Try not to cross those bridges before you get to them, easier said than done.
Good luck
 
Thanks for all of the support. 12 hours? Oh that will be fun! Maya did they make her do/drink anything to help it along? Since we are in the hospital for the dummy cam they were saying after 4 hrs they would send her down for x rays if it didn't pass within 6 & they would be every 2 hrs. The resident doc said if it is slow moving there may be helpful indications by xraying it. He says that now, but it is a Friday, on a long weekend and i bet after 5 that schedule will change. If the dummy passes we will get 2 passes over the weekend for 6 hrs each to leave the hospital. It would be nice to get a break from in here if there is nothing to do & no activities.

Tess-it is S's old doctor performing the scope today. I was kind of surprised it wasn't our doc, but no biggie. I doubt it matters much either way. I have met him a couple of times so I know we are in good hands.

The surgery consult got pushed around because someone had the same logical conclusion as me. Why have the surgery consult before the scopes? The surgical resident came in to meet us & told us who the surgeon would be but that it made more sense to meet on Tuesday. So waiting... & waiting...
 
Dr. Walters? Nice man, easy to talk with (translating to being very patient with a neurotic mother! :lol:), obviously very knowledgeable and S really liked him. :) D's in good hands!

Good luck with everything this weekend! Hope all goes smoothly. :ghug:
 
If he is used to neurotic moms then we will get along well. Being at a children's hospital is heartbreaking. I don't know why it seemed easier at the general hospital. Maybe because even though she is suffering so much there are so many other children with bigger issues you feel bad to bump others instead of when you bump an adult.
 
No, M didn't drink anything. She wasn't allowed to eat till lunch time, then she was allowed a bit of soup and at 4 a real meal (she was starving!). We didn't even do the full colonoscopy prep. We did one x-ray and it hadn't passed and we were going to have to do another one but she passed it that night.

Hang in there, thinking of you both.
 
We got to go home over the long weekend after they looked at the results from our last colonoscopy done with our old GI. There has been actual healing! Because of this they want to hold off on surgery. I couldn't agree more. The day after her colonoscopy/endoscopy she went #2 3 times! Sunday & Monday 2x! In 2.5 years she has never gone this little.

We think the dummy pill camera passed so we can skip the xray today. The pill camera scheduled for today was postponed (part of why we got to go home) as there is some sort of technical issue with it. We have a follow up in 2 weeks after the biopsies come back.

I don't know if it was the Simponi, the antibiotics, or the bowel prep but she has never felt better. Long may this last!!!
 
Wow! That is fab! :):):)

I’m right there with you, may this keep on keeping on! Good Luck!

Dusty. xxx
 
What wonderful news!!! :banana: :banana: SO glad to hear she's feeling better.
 
I'm so happy for you! :D I hope it's only the beginning of better, better days! :sun:
 
Thanks. I can't believe how wonderful it is to breathe a little. I actually am calculating all the time I spent on the internet looking into obscure things with IBD per day to see how much time I am saving. Think I might have to start exercising with all this free time on my hands. I have calculated just for the comparison of the last week going 8x a day & now 2x, each being 15 mins long she has saved herself at least 1.5 hrs a day... now what to do with that time....
 

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