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Marni Update
- Thread starter Marni's mom
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Help Support Crohn's Disease Forum:
CarolinAlaska
Holding It Together
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Oh no! Posts stopped 12 hours ago! I hope everything is okay!
Crohn's Mom
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Hope everything is going ok Marni's Mom !
I've just caught up on everything!
:ghug:
I've just caught up on everything!
:ghug:
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So today was the balloon colonscopy performed by an adult GI doc who was called in by our pedi GI team because they didn't have experience using this technique on kids. It took about two hours for him to move about 200cm into her small intestine. They got the video and biopsies. When he was done, he came out to the waiting area for us to talk and see the pictures. We discussed how he wasn't able to get through the entire intestinal tract and whether it was worth it, or even necessary or not, to go back in via colon to get a view of the rest of the tract. We agreed that it would definitely be worth it, but the timing was in question. My husband and I hoped that it could be done tomorrow while we were still in the hospital. Afterall, she'd already been NPO and the cleanout would be easy. And, after the fight she put up to even get her to the hospital this time, it seemed better for all involved to just get it done. However, after consulting between themselves, the doctors felt that it was not in her best interest to be put to sleep again so soon or to have all that air pumped into her abdomen again so soon.
So, we're going to have to go back in a week or two for the other half.
Now, for the images....WOW....we got to see parts of her instestines we've never seen before because the only other way to get down there is via pill cam, and the last time we did the pill cam (before this one where the dummy got stuck), the camera stopped operating after the usual 8 hours, but it hadn't moved far enough along the path in that length of time to even get images of the entire small intestine.
There were many spots of inflammation. They were very red. There were also a lot of places where you could see scarring and distortion of the rings from that scarring and there were pseudo polyps ALL over the place. There were even two that had grown towards each other across the lumen of the intestine and fused together creating this vertical "bar" from onoe side of the intestinal wall to the other. I asked if this could cause a back-up of food , but the doc said that it was far enough down that food would have already been processed and digested to a consistency that would pass on either side of that "bar" and not get stuck.
I asked him if he felt, with his experience with adult CD patients, that those inflammed areas were enough to be able to cause the severity of pain Marni has on a daily basis and he said, "Oh yes!"
I finally feel like we have something to point to as if to say, "See? She DOES have Crohn's disease after all!" because til now, it has always been something like the Emperor's new clothes to me when looking at endoscopic images of her guts.
Now, I'm very anxious to see what the rest of her tract looks like. The doctors are too. So, we will definitely do the other half. She, of course, is not thrilled about it because it means yet another clean out and NPO the day before. But hopefully, this discovery will mean we don't have to go in and look at it again for a long time. We'll just have to accept that any changes in her current treatment that cause her pain to get better will mean that the inflammation is being controlled. I know ideally it would be great to actually go back and compare the images from now to then, but I don't think it's worth the trauma to Marni to do it just so we can ooh and ahh about how much better it looks.
I say that now, but we'll have to see what the doc thinks when the time comes.
So, we're going to have to go back in a week or two for the other half.
Now, for the images....WOW....we got to see parts of her instestines we've never seen before because the only other way to get down there is via pill cam, and the last time we did the pill cam (before this one where the dummy got stuck), the camera stopped operating after the usual 8 hours, but it hadn't moved far enough along the path in that length of time to even get images of the entire small intestine.
There were many spots of inflammation. They were very red. There were also a lot of places where you could see scarring and distortion of the rings from that scarring and there were pseudo polyps ALL over the place. There were even two that had grown towards each other across the lumen of the intestine and fused together creating this vertical "bar" from onoe side of the intestinal wall to the other. I asked if this could cause a back-up of food , but the doc said that it was far enough down that food would have already been processed and digested to a consistency that would pass on either side of that "bar" and not get stuck.
I asked him if he felt, with his experience with adult CD patients, that those inflammed areas were enough to be able to cause the severity of pain Marni has on a daily basis and he said, "Oh yes!"
I finally feel like we have something to point to as if to say, "See? She DOES have Crohn's disease after all!" because til now, it has always been something like the Emperor's new clothes to me when looking at endoscopic images of her guts.
Now, I'm very anxious to see what the rest of her tract looks like. The doctors are too. So, we will definitely do the other half. She, of course, is not thrilled about it because it means yet another clean out and NPO the day before. But hopefully, this discovery will mean we don't have to go in and look at it again for a long time. We'll just have to accept that any changes in her current treatment that cause her pain to get better will mean that the inflammation is being controlled. I know ideally it would be great to actually go back and compare the images from now to then, but I don't think it's worth the trauma to Marni to do it just so we can ooh and ahh about how much better it looks.
I say that now, but we'll have to see what the doc thinks when the time comes.
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So glad they got some good images! Sounds like a really good procedure, and you can now explain to her why she has been in so much pain.
(((HUGS))) to you all. So glad that her trip into hospital has been productive with discovering what is going on with her. xxx
(((HUGS))) to you all. So glad that her trip into hospital has been productive with discovering what is going on with her. xxx
CarolinAlaska
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I'm glad they were able to do this. I didn't even know this kind of test was possible until today when I read your other posts. I think Niks' Jaime needs one of these! So what can they do for her pseudo polyps and all the rest of the stuff? Is she going to change meds? I'm so glad that she gets to go home for a week and stop getting prodded for a little while...
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Amazing what some of these new techniques can do! That was great they could see further into her intestine although that's a shame there is so much going on in there. Thankfully at least now they are sitting up and really taking notice and will come up with a good plan to treat her!
Was there any discussion of treatments or do they want to wait til after the colonoscopy? Did they think that "bar" could be healed by meds or will it require surgery? I'm assuming that's a fistula?? I've never heard anyone mention one connecting on the inside of the bowel?
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I'm so glad that part is over with and you have some answers! I hope once the other half is done and you know exactly what you are dealing with, your sweet girl can get some much needed relief and start to feel better. ((((((hugs)))))))
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Dexky, actually, the doc said that "bar" isn't a concern. No treatment is necessary. It's not a fistula. It's all internal. He said it was two of those pseudopolyps that had grown towards each other and met in the middle and fused together. As far as the polyps, the report calls them pseudo polyps. They look like polyps, but he said they are made up of the same tissue the walls of the intestine are made up of. For that reason, they don't need to be treated or removed.
I will have a litany of questions ready when it's time, but for now, I'm going to wait until the other part of the scope is done. The GI gave me his email address and told me to contact him tomorrow to get the results of the biopsies from Tuesday.
Once I have all the info, I'll post it here for you all to go over with me and give your opinions and impressions. I just haven't quite recovered from the hospital stay....need more rest.
I will have a litany of questions ready when it's time, but for now, I'm going to wait until the other part of the scope is done. The GI gave me his email address and told me to contact him tomorrow to get the results of the biopsies from Tuesday.
Once I have all the info, I'll post it here for you all to go over with me and give your opinions and impressions. I just haven't quite recovered from the hospital stay....need more rest.
CarolinAlaska
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Even if it is not pathologic, it seems a "bar" across the intestine could create a block, doesn't it? Looking forward to seeing more results and reading the ensuing discussions. I hope you all have a happy weekend and get plenty of rest!
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Ask 10 GIs a question and get 14 answers! Geez. So, it seems that what I left the hospital thinking last Wednesday isn't quite right after a long conversation with Marni's pedi GI today on the phone. He called me this morning and we talked for almost an hour. I was shocked he had that kind of time to talk with me, but he has commented many times over the past couple of years about how Marni keeps him awake at night. He says she doesn't "follow" any of the "rules" about Crohn's. She doesn't respond to the therapies he tries like he expects and very often her lab, histologic, and clinical signs and symptoms contradict each other.
It seems he doesn't agree with the adult GI doc who assured me that the foci of inflammation that could be seen on the walls of her small intestine could cause the levels of pain she's feeling. The GI doc was pretty adamant that the red spots could do it, but our doc is still convinced that the problem is coming from her rectum. He told me the results of the biopsies from the first half of her balloon endoscopy last Tuesday showed only mild inflammation while ALL of the tests so far point to her sigmoid colon and rectum as the problem. The MRI, regular colonoscopy and biopsies all confirm thickening of the walls in that location, scarring, narrowing, etc and severe inflammation. He's not sure about why she's not having pain when she has a bowel movement because he said her rectum is so narrowed that he's surprised anything can pass through it. He said it was hard getting the camera in there and (excuse me) his finger (ouch). She also has a bad fissure inside her rectum, he said.
We will go ahead with the second part of the telescoping colonoscopy next week, but he's pretty sure we're not going to see anything significant in the rest of the small intestine. He has been discussing marni's case with a doctor who he says is the leading Pedi GI Crohn's doc in the US who is up in Philly. I asked him if he thought I should take her up there to see him. Our doc said I could if I wanted to (of course I can!) but that he's been discussing her case with him and he has confirmed that our doc is doing everything the same way he would.
So, now the talk is to cease the Humira and Methotrexate and try, of all things, Thalidimide. He said he's used it once before with a child and had success. I am 50, so I remember hearing stories about mothers who used this drug in the 60s and gave birth to children with no arms, etc. I wondered and asked about the risks to her future pregnancies, and he said the drug is dangerous for babies when taken during pregnancy, but if it's out of the patient's system before they get preganant, there is not risk to the baby of deformities.
If thalidimide doesn't work, then we will be discussing surgery because there will be nothing left to try. Now i need to read up on as much about resection of the rectum as I can. I haven't seen anything about this that I can remember. If I did, I probably didn't pay close attention because I didn't think it was pertinent to our case. I know that an ostomy will be necessary during healing, but I have no idea about what is done to replace that lost structure, if anything. Anyone know anythign about this?
So, all the "excitement" regarding seeing with our own eyes what we thought was causing Marni's pain, now my balloon is deflated and I feel like we are no better off than we were before Tuesday.
Any input you have or questions I might need to ask is greatly appreciated! Thanks.
Stacey
It seems he doesn't agree with the adult GI doc who assured me that the foci of inflammation that could be seen on the walls of her small intestine could cause the levels of pain she's feeling. The GI doc was pretty adamant that the red spots could do it, but our doc is still convinced that the problem is coming from her rectum. He told me the results of the biopsies from the first half of her balloon endoscopy last Tuesday showed only mild inflammation while ALL of the tests so far point to her sigmoid colon and rectum as the problem. The MRI, regular colonoscopy and biopsies all confirm thickening of the walls in that location, scarring, narrowing, etc and severe inflammation. He's not sure about why she's not having pain when she has a bowel movement because he said her rectum is so narrowed that he's surprised anything can pass through it. He said it was hard getting the camera in there and (excuse me) his finger (ouch). She also has a bad fissure inside her rectum, he said.
We will go ahead with the second part of the telescoping colonoscopy next week, but he's pretty sure we're not going to see anything significant in the rest of the small intestine. He has been discussing marni's case with a doctor who he says is the leading Pedi GI Crohn's doc in the US who is up in Philly. I asked him if he thought I should take her up there to see him. Our doc said I could if I wanted to (of course I can!) but that he's been discussing her case with him and he has confirmed that our doc is doing everything the same way he would.
So, now the talk is to cease the Humira and Methotrexate and try, of all things, Thalidimide. He said he's used it once before with a child and had success. I am 50, so I remember hearing stories about mothers who used this drug in the 60s and gave birth to children with no arms, etc. I wondered and asked about the risks to her future pregnancies, and he said the drug is dangerous for babies when taken during pregnancy, but if it's out of the patient's system before they get preganant, there is not risk to the baby of deformities.
If thalidimide doesn't work, then we will be discussing surgery because there will be nothing left to try. Now i need to read up on as much about resection of the rectum as I can. I haven't seen anything about this that I can remember. If I did, I probably didn't pay close attention because I didn't think it was pertinent to our case. I know that an ostomy will be necessary during healing, but I have no idea about what is done to replace that lost structure, if anything. Anyone know anythign about this?
So, all the "excitement" regarding seeing with our own eyes what we thought was causing Marni's pain, now my balloon is deflated and I feel like we are no better off than we were before Tuesday.
Any input you have or questions I might need to ask is greatly appreciated! Thanks.
Stacey
CarolinAlaska
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Stacey, I can't imagine how sick you must be feeling over your options right now. You and Marni are in my mind and heart and prayers. Of course I have no experience with anything you are going through, but I was barely functional dealing with a much less sick child. <<<HUGS>>>>
Stacey,
Oh my. I am sorry for your suffering right now. This has been a long journey. Hugs. :ghug:
Excuse me for commenting on something I know little about. I'm just trying to brainstorm:
Has the Philly doctor seen all the tests and endoscopy/colonoscopy photos?
Since Marni hasn't fit into any of the "boxes" in terms of her reactions to drugs, labs, ect., has her team thought of pulling in doctors from other fields (Infectious Disease, Endocrinologist) or trying alternative or fringe treatments? Since her issues quite possibly revolve around the colon, what about the worm therapy? I think that may be more of a colitis remedy, but who knows?
Does your doctor or the Philly doctor know of a hospital running a clinical trial on a new approach that might help Marni? It seems like with the Philly doctor's recommendation, you could probably get her in anywhere.
I'm hoping and praying the new meds work! We all are!
Where's Dr. House when you need him!
More hugs to you and your sweet daughter. :ghug:
Kimberly
Oh my. I am sorry for your suffering right now. This has been a long journey. Hugs. :ghug:
Excuse me for commenting on something I know little about. I'm just trying to brainstorm:
Has the Philly doctor seen all the tests and endoscopy/colonoscopy photos?
Since Marni hasn't fit into any of the "boxes" in terms of her reactions to drugs, labs, ect., has her team thought of pulling in doctors from other fields (Infectious Disease, Endocrinologist) or trying alternative or fringe treatments? Since her issues quite possibly revolve around the colon, what about the worm therapy? I think that may be more of a colitis remedy, but who knows?
Does your doctor or the Philly doctor know of a hospital running a clinical trial on a new approach that might help Marni? It seems like with the Philly doctor's recommendation, you could probably get her in anywhere.
I'm hoping and praying the new meds work! We all are!
Where's Dr. House when you need him!
More hugs to you and your sweet daughter. :ghug:
Kimberly
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Sorry I'm so late there... I am so sorry at all you and Marni have been through!!! My heart breaks for both of you! It's never easy making decisions, but especially tough when even the doctors aren't 100% in agreement. 
Lots of hugs!! :ghug: I hope the change in meds will make all the difference!! :ghug:
Lots of hugs!! :ghug: I hope the change in meds will make all the difference!! :ghug:
I have no advice, just sympathy and support. I'm thrilled for you that your doctor truly cares about Marni and is willing to give so much of his time. Good doctors can be hard to find!
One thing that our doctor told me - kids sometimes have trouble distinguishing where their pain is coming from. For example, A will usually just say her whole belly hurts instead of localizing where the pain is actually coming from. They also don't verbalize the extent of their symptoms as well as an adult would. I think that makes diagnosis much more difficult with little ones.
One thing that our doctor told me - kids sometimes have trouble distinguishing where their pain is coming from. For example, A will usually just say her whole belly hurts instead of localizing where the pain is actually coming from. They also don't verbalize the extent of their symptoms as well as an adult would. I think that makes diagnosis much more difficult with little ones.
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Hugs good luck next week with the scope.
Honestly I would seek a 2 opinion at Bch or cchmc
Your doc talking to another doc is great except the other doc formed his opinion
Based on what your doc was seeing saying etc... Not as a fresh set of eyes.
When we took DS our Gi also had discussed his case with another Gi
And told us as well no point "seeing " that Gi since he already knew of DS.
He said a true 2 opinion looks at everything fresh to see what is what .
I know izzismom had success with tacrolimus at Bch .
Cchmc is doing cimzia pediatric trials right now .
Hugs
Honestly I would seek a 2 opinion at Bch or cchmc
Your doc talking to another doc is great except the other doc formed his opinion
Based on what your doc was seeing saying etc... Not as a fresh set of eyes.
When we took DS our Gi also had discussed his case with another Gi
And told us as well no point "seeing " that Gi since he already knew of DS.
He said a true 2 opinion looks at everything fresh to see what is what .
I know izzismom had success with tacrolimus at Bch .
Cchmc is doing cimzia pediatric trials right now .
Hugs
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Niks, you're right....sometimes it really makes it hard to know whose advice to take when you get so many opinions from doctors. I do understand that their opinions come from their experiences, though. I'm a dentist, and I tell my patients all the time that if they ask ten dentists for opinions on a case, they're going to get ten or more different opinions. It all depends on our experiences over the span of our careers. And, all of the opinions can be right, too. That's the hard part. So, like so many of you keep saying, we just have to go with our gut when making these decisions. The hard part as parents is that we are making them for someone other than ourselves.
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I totally agree!!
It's also trial and error unfortunately. But every step along the way you are learning something new about how Marni will react and in the future I think the decision making gets easier because you become familiar with their disease course.
((((Hugs)))))
It's also trial and error unfortunately. But every step along the way you are learning something new about how Marni will react and in the future I think the decision making gets easier because you become familiar with their disease course.
((((Hugs)))))
Hi MM.....I've just read your story and your journey with Marni, and wow, you guys have gone through so much. I know how disheartening and confusing, and overwhelming things can get when treatments don't work, when you have differing opinions, and when YOU have to decide what the next step is. Sometimes i get the feeling that there is just one little piece of the puzzle missing and that if one could only find that one would find the right therapy. It sounds like you have a good and caring team of docs, and you will soon have more info. I will be thinking of you and Marni, and I hope you find something soon to give Marnie some relief. Many hugs.
Stacey,
I'm an elementary teacher- 6th grade.
I read you are in the 504 process right now. It might be good to add that she can go on class fieldtrips even if she isn't regularly attending school.
Remember to ask for copies of the answer keys. Sometimes there are worked-out solution keys and/or cd's from the publishers with helpful extras (lessons, outlines, games, etc.) If she's supper tired, she can listen to the audio lessons or stories while resting.
Also, maybe the teacher can list out the "must do's" in math so she isn't spending a lot of time on minor concepts. Additionally, if you google fractions, for example, make sure you put "powerpoint" at the end of your search. It can lead you to some awesome lessons from other teachers that are written in a step-by-step fashion.
Good luck!
Message me if you want math help sheets for Marni to use while catching up. She's a fourth grader, right?
Kimberly
I'm an elementary teacher- 6th grade.
I read you are in the 504 process right now. It might be good to add that she can go on class fieldtrips even if she isn't regularly attending school.
Remember to ask for copies of the answer keys. Sometimes there are worked-out solution keys and/or cd's from the publishers with helpful extras (lessons, outlines, games, etc.) If she's supper tired, she can listen to the audio lessons or stories while resting.
Also, maybe the teacher can list out the "must do's" in math so she isn't spending a lot of time on minor concepts. Additionally, if you google fractions, for example, make sure you put "powerpoint" at the end of your search. It can lead you to some awesome lessons from other teachers that are written in a step-by-step fashion.
Good luck!
Message me if you want math help sheets for Marni to use while catching up. She's a fourth grader, right?
Kimberly
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Kimberly, wow, thank you! Great advice. I'm perplexed a bit right now because Marni took a turn towards feeling better this weekend. I know it's only been a few days, but it looks like the steroids and changes in some meds have kicked in. We're at the hospital right now to complete the whole GI "scopy" series started week before last, but if we hadn't had to come here today, I think she would have gone to school. She went for two hours from 1 to 3pm on Friday.
So, this made me wonder if designating her as homebound was even necessary anymore, but of course, things could change in a day again. Plus, she's already missed two months of school. So, when her doc came by our room this afternoon, we discussed it, and he told me he was going to sign anything that they ask him to to get her homebound because going back to school for full days after not being there for two months will be stressful and knowing how much school she's missed will give her stress and anxiety, too. He wants her to be able to go when she feels well enough to go without the stress of being penalized for not being there. I wanted to hug him. I think having her as "homebound" is the best of both worlds for her giving her and me options during good times and bad times. As far as the work load, thank you so much for the good advice. I don't know where to start to try to help her catch up. I'm hoping the homebound teacher will be a big help with that.
Stacey
So, this made me wonder if designating her as homebound was even necessary anymore, but of course, things could change in a day again. Plus, she's already missed two months of school. So, when her doc came by our room this afternoon, we discussed it, and he told me he was going to sign anything that they ask him to to get her homebound because going back to school for full days after not being there for two months will be stressful and knowing how much school she's missed will give her stress and anxiety, too. He wants her to be able to go when she feels well enough to go without the stress of being penalized for not being there. I wanted to hug him. I think having her as "homebound" is the best of both worlds for her giving her and me options during good times and bad times. As far as the work load, thank you so much for the good advice. I don't know where to start to try to help her catch up. I'm hoping the homebound teacher will be a big help with that.
Stacey
What a gift to get to stay home! I wish at my son's age that was an option.
Please, message me once you figure out what she needs to do in math. I'll send you what I have. I LOVE math, so I am extra happy to help.
What a great doctor!
I think she's in fourth grade, right?
Kimberly
Please, message me once you figure out what she needs to do in math. I'll send you what I have. I LOVE math, so I am extra happy to help.
What a great doctor!
I think she's in fourth grade, right?
Kimberly
CarolinAlaska
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What a gift to get to stay home! I wish at my son's age that was an option.
Please, message me once you figure out what she needs to do in math. I'll send you what I have. I LOVE math, so I am extra happy to help.
What a great doctor!
I think she's in fourth grade, right?
Kimberly
I think that Marni is going to have a home tutor from her school keeping her up with her class - not homeschooling on her own. This will allow her to go back to school when she wants to and is feeling good again without having to do catch up...
P.S. I love math too!
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Glad Marni is having some good days. ALso glad your school district is giving her homebound instruction. We tried to get it in St. Louis for Caitlyn and they kept refusing us.
CarolinAlaska
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Hi Stacey, how are you and Marni doing?
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I can't believe it's been two weeks since I posted last. During Feb and March, it seemed like my entire existence revolved around Marni and the hospital. But, once she had the other "half" of the endoscopy done, and we went home, real life kicked in. My other daughter had a theater production and other extracurricular activities, and I returned to working a full schedule, which meant no time during the day to check the forum, and being too tired at night to do it, too.
We saw Marni's doctor yesterday for her follow up. He reported that her labs are all normal. In fact, her CRP and sed rate have never been so low. She's currently not iron deficient also, after an iron infusion at the hospital during one of her stays. She used to get iron infusions every time she got her Remicade, but now that she isn't taking that, the iron infusions aren't quite as easy or convenient to give. She's been on Prednisone since the first hospital stay, and we're not tapering her off. In the meantime, she's got that moonface and is eating everything in sight. I stopped the EEN for now because I feared she'd actually get TOO many calories. Who would have ever believed THAT?
So, all that grief, stress, anxiety, etc in Feb and March about the hospital, the missed school, possible surgery to resect her rectum...was it for nothing? Not quite. Things aren't normal yet. Despite all her labs being normal, and her doctor telling me she's in clinical remission....SHE IS STILL IN PAIN. Every day. The doc says that we've ruled out the pain being from inflammation because her markers are all normal. So, he thinks it's residual nerve pain or IBS. He will now try to address it from that perspective.
I've made her an appointment with a psychologist to hopefully help her find ways to cope with the chronic pain. And, she's officially "504ed" and the homebound teacher is starting tomorrow. She will be coming to our house three times a week for an hour and a half to teach Marni what she's missing in school. I'm thrilled that we basically got the best of both worlds: She can go to school whenever she feels well enough to go, but if she doesn't go, she won't be counted absent. AND she gets a teacher at home, too.
She still hasn't been able to go to school more than about a few days in the past few weeks.
The steroids make her beligerent, too, which means we're clashing a lot because of her mouth. When the doctor asked her to give them a stool sample yesterday, Marni refused. I told the doc not to worry, we weren't going to leave until she gave that sample. Marni walked out of the dr. office and stayed outside the door for over an hour, refusing to come back in. So, I hate to admit it, but she won that battle....but don't worry, she WILL NOT WIN THE WAR I had to end up grounding her!
That's the latest, and again, thank you to all of you for your kind support, flowrs, email, notes, etc.
Stacey
We saw Marni's doctor yesterday for her follow up. He reported that her labs are all normal. In fact, her CRP and sed rate have never been so low. She's currently not iron deficient also, after an iron infusion at the hospital during one of her stays. She used to get iron infusions every time she got her Remicade, but now that she isn't taking that, the iron infusions aren't quite as easy or convenient to give. She's been on Prednisone since the first hospital stay, and we're not tapering her off. In the meantime, she's got that moonface and is eating everything in sight. I stopped the EEN for now because I feared she'd actually get TOO many calories. Who would have ever believed THAT?
So, all that grief, stress, anxiety, etc in Feb and March about the hospital, the missed school, possible surgery to resect her rectum...was it for nothing? Not quite. Things aren't normal yet. Despite all her labs being normal, and her doctor telling me she's in clinical remission....SHE IS STILL IN PAIN. Every day. The doc says that we've ruled out the pain being from inflammation because her markers are all normal. So, he thinks it's residual nerve pain or IBS. He will now try to address it from that perspective.
I've made her an appointment with a psychologist to hopefully help her find ways to cope with the chronic pain. And, she's officially "504ed" and the homebound teacher is starting tomorrow. She will be coming to our house three times a week for an hour and a half to teach Marni what she's missing in school. I'm thrilled that we basically got the best of both worlds: She can go to school whenever she feels well enough to go, but if she doesn't go, she won't be counted absent. AND she gets a teacher at home, too.
She still hasn't been able to go to school more than about a few days in the past few weeks.
The steroids make her beligerent, too, which means we're clashing a lot because of her mouth. When the doctor asked her to give them a stool sample yesterday, Marni refused. I told the doc not to worry, we weren't going to leave until she gave that sample. Marni walked out of the dr. office and stayed outside the door for over an hour, refusing to come back in. So, I hate to admit it, but she won that battle....but don't worry, she WILL NOT WIN THE WAR I had to end up grounding her!
That's the latest, and again, thank you to all of you for your kind support, flowrs, email, notes, etc.
Stacey
We have been in the pain but no inflammation (never sure I believe this) boat before and to some extent we are still in it. It is frustrating. I look forward to hearing how your docs approach treating it.
Good luck with the psychology visits. We also did that with mixed results but some if it was definitely beneficial.
Does Marni take a probiotic?
Good luck with the psychology visits. We also did that with mixed results but some if it was definitely beneficial.
Does Marni take a probiotic?
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Boy have we been i. That boat of pain but no inflammation. One GI told us that sometimes the gut becomes hypersensitive in IBD patients. That was why Caitlyn took amitryptalline for a long time. It helped her a lot especially in the beginning. I also bought her something called a Bean from the sharper image in the mall. It is like a hot water bottle that is filled with a gel. You plug it in for about 15 minutes and then it stays warm for a long time. Caitlyn uses it whenever she has pain and she says it helps.
CarolinAlaska
Holding It Together
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I would request a fecal calprotectin test because that is the only thing that shows my daughter's inflammation. I'm glad that Marni is doing well on pred, but is she getting anything to keep her in remission when she has to get off it?
