My son Lucas, was diagnosed with Crohn`s on Dec.9, 2010 by colonoscopy and gastroscopy and biopsy. We were scheduled for a routine ultrasound and small bowel follow through yesterday and they found an abcess on his proximal colon. A drain was put in place to get the infection and he will be on IV antibiotics for a week and then oral antibiotics. The game plan is to wait for a month or so and then go in and take that portion out. Does any one have any knowledge on what the chances are that he won`t have to have the resectionCookie. My husband has Crohns as well and was resected 5 years ago. He has managed to control it by meds but he was also older when diagnosed. I am afraid because the diagnoses is so new and he is already having surgery. He is 15. I am asea in the world of pediatric Crohn`s, any tips or suggestions appreciated.
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Hi Rad, DustyKat's daughter had a resection 4 1/2 yrs ago in an emergency situation. She nearly died and was diagnosed on the op. table. She's been in remission since the surgery and was 14 at the time. I've heard Dusty say a number of times that she would imagine having the surgery under better, more controlled circumstances could only improve the outcome. I'm sure she'd tell you much more but she is currently in hospital with her son who also has recently been dxed with crohns.
Have they prescribed any other crohns medications or just the antibiotics?
Hey Rad, I just found this from an old thread. It's a complete history of Dusty's daughter's pre/post surgery. It was given in response to some specific questions but I thought much of it may be relevant to you....
Firstly, I have not had the surgery my daughter has. I am not surprised your family do not agree with you contemplating this simply because as you have stated you are generally in good health but you are the one that has to live with Crohns. I wish you all the luck in the world with your decision.
Now the questions:
Do you feel I should get the surgery given the above and that there is a minute chance of death and less so from drugs...? Yet, it should put me into immediate remission (first time since diagnosed)
I find this really difficult to answer as it is such a personal decision. The surgery versus medication issue is something I often think about because Roo did not have a choice with her surgery. I wonder where she would be now if she had been given the opportunity to go down the diet and medication path and that is something I will never know.
What are your own experiences with this surgery? Successful?, years in remission?, long lasting side effects (I have heard diarhea?)?, etc
Roo has had a mixed bag of success and side effects from her surgery. It immediately put her into remission and she has been that way ever since, it was 4 years in July. I would say her only side effect, and it is a big one, is short bowel syndrome. I guess your chances of being left with this are very much dependent on how much bowel you have removed. Roo had 59cms removed but you indicate that in your case it would be much less than this, so that has to be a positive and surely a very significantly reduced chance of you developing chronic diarrhoea. There is medication available to help with this should it happen.
Are there any questions I should ask the doctor from your own experiences. Here is what I have now:
-How many people have you lost due to this surgery (whether post op or during op)
-Are there long lasting side effects
-How long until I can return to normal eating and activity
I had more, but am drawing a blank now...I will update later if I remember
- Will I be on maintenance medication post op.
- Will I require supplements such as B12 injections, Folic Acid etc.
If you have had the surgery, please let me know:
-your age when you had the surgery
Roo was 14 years old.
-how long ago since you have had the surgery
She had the surgery in July 2006.
-your overall physical healthiness before and currently
Her health in the lead up to surgery was extremely poor and immediately prior to surgery it was critical. Although she was septic and her bowel was a mess, perforated and infarcted, she had a very good post op recovery time and was in hospital for only 6 days. I gave her 6 months to fully recover and realistically this is about how long it took, I'm talking to get back to 100% here. Bear in mind she was very ill for 6 months prior to her surgery. Currently she is going extremely well both mentally and physically. She lives away from home, on campus at university.
HTH,
Dusty
Have they prescribed any other crohns medications or just the antibiotics?
Hey Rad, I just found this from an old thread. It's a complete history of Dusty's daughter's pre/post surgery. It was given in response to some specific questions but I thought much of it may be relevant to you....
Firstly, I have not had the surgery my daughter has. I am not surprised your family do not agree with you contemplating this simply because as you have stated you are generally in good health but you are the one that has to live with Crohns. I wish you all the luck in the world with your decision.
Now the questions:
Do you feel I should get the surgery given the above and that there is a minute chance of death and less so from drugs...? Yet, it should put me into immediate remission (first time since diagnosed)
I find this really difficult to answer as it is such a personal decision. The surgery versus medication issue is something I often think about because Roo did not have a choice with her surgery. I wonder where she would be now if she had been given the opportunity to go down the diet and medication path and that is something I will never know.
What are your own experiences with this surgery? Successful?, years in remission?, long lasting side effects (I have heard diarhea?)?, etc
Roo has had a mixed bag of success and side effects from her surgery. It immediately put her into remission and she has been that way ever since, it was 4 years in July. I would say her only side effect, and it is a big one, is short bowel syndrome. I guess your chances of being left with this are very much dependent on how much bowel you have removed. Roo had 59cms removed but you indicate that in your case it would be much less than this, so that has to be a positive and surely a very significantly reduced chance of you developing chronic diarrhoea. There is medication available to help with this should it happen.
Are there any questions I should ask the doctor from your own experiences. Here is what I have now:
-How many people have you lost due to this surgery (whether post op or during op)
-Are there long lasting side effects
-How long until I can return to normal eating and activity
I had more, but am drawing a blank now...I will update later if I remember
- Will I be on maintenance medication post op.
- Will I require supplements such as B12 injections, Folic Acid etc.
If you have had the surgery, please let me know:
-your age when you had the surgery
Roo was 14 years old.
-how long ago since you have had the surgery
She had the surgery in July 2006.
-your overall physical healthiness before and currently
Her health in the lead up to surgery was extremely poor and immediately prior to surgery it was critical. Although she was septic and her bowel was a mess, perforated and infarcted, she had a very good post op recovery time and was in hospital for only 6 days. I gave her 6 months to fully recover and realistically this is about how long it took, I'm talking to get back to 100% here. Bear in mind she was very ill for 6 months prior to her surgery. Currently she is going extremely well both mentally and physically. She lives away from home, on campus at university.
HTH,
Dusty
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He is on Pentasa, prednisone and pantoloc, as well as prenatal vitamins an iron supplement a probiotic for IBD and omega 3. THough I have to admit, I am only insistent on the meds and iron and if he feels up to it I will give him the rest. At this point I am happy if he keeps the regular stuff down. We are due to be released from hospital on Dec.23 as long as there are no further complications. Lucas has 2 siblings that are terrified now that this will happen to them. I have no idea what to say to them. I work for a doc who had UC and now an ostomy back in the 70s and he is a great source of knowledge about IBD. He was the one who got the ball rolling to get a diagnosis. Thanks for listening.
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Hi Rad,
I am going through this with a son around your son's age now. Anthony is 14 and diagnosed in September. We have no family history, and this is my first experience with the disease. He is supposed to have a resection next week (although I have an appt. for second opinion tomorrow, so not 100% yet). I went back and forth over the meds vs. surgery for the last two weeks now. At this point, they believe the stricture is too far gone to respond to meds. The side effects also terrified me, and I thought that it was best to put them off if possible. I have watched his health deteriorate to the point that I want to do the surgery now. I know it doesn't cure it, but he is in constant chronic pain. I don't really have any advice for you, but just wanted to let you know you aren't alone in dealing with this with your child.
I am so sorry to hear about the infection, but glad that he is getting the treatment he needs. Hang in there and keep posting - the people here are fantastic!
(((Hugs)))
I am going through this with a son around your son's age now. Anthony is 14 and diagnosed in September. We have no family history, and this is my first experience with the disease. He is supposed to have a resection next week (although I have an appt. for second opinion tomorrow, so not 100% yet). I went back and forth over the meds vs. surgery for the last two weeks now. At this point, they believe the stricture is too far gone to respond to meds. The side effects also terrified me, and I thought that it was best to put them off if possible. I have watched his health deteriorate to the point that I want to do the surgery now. I know it doesn't cure it, but he is in constant chronic pain. I don't really have any advice for you, but just wanted to let you know you aren't alone in dealing with this with your child.
I am so sorry to hear about the infection, but glad that he is getting the treatment he needs. Hang in there and keep posting - the people here are fantastic!
(((Hugs)))
DustyKat
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Hi Rad, :bigwave:
I think the chances of needing surgery would largely depend on your son's symptoms and clinical observations at the time of review. If he has responded well to treatment then there would be no need consider surgery at this point.
Since he had small bowel follow through am I right in assuming it's terminal ileum/small bowel? If so do you know the extent of the disease and the amount of narrowing?
Have they discussed the use of Biologics (Humira, Remicade) with you?
Thinking of you, :hug:
Dusty
I think the chances of needing surgery would largely depend on your son's symptoms and clinical observations at the time of review. If he has responded well to treatment then there would be no need consider surgery at this point.
Since he had small bowel follow through am I right in assuming it's terminal ileum/small bowel? If so do you know the extent of the disease and the amount of narrowing?
Have they discussed the use of Biologics (Humira, Remicade) with you?
Thinking of you, :hug:
Dusty
Well another ultrasound today. The hospital wants to keep him on IV antibiotics untill the 23th because they think that he will just abcess again and they want to get him through Christmas. I have an appointment for a second opinion but not till the New Year. Dusty, we didn`t even GET to the small bowel follow through. By chance they did the ultrasound first and found the abcess. As you can imagine, things moved quickly after that. He hardly has any pain now(except for the drain). We were very lucky, right place, right time. We are still in the beginning stages of finding out how much involvement there is but they don`t want the barium to pass the abcess site. So it seems its a waiting game at this point. I am still reeling from the diagnosis and it feels like everything is moving SOOO fast. Thanks for listening and I appreciate the concern. Kelly, i am praying for some relief for Ant. It is unbearable to watch your child in pain and feel so helpless.
Rachel
Rachel
Hey there so sorry for the dx and especially so close to christmas. Im sure he is in great hands though as he already has his da to look up to and know he can still be a normal guy too. Best of luck!
So the drain was removed 6 days ago and so far so good(fingers crossed). His antibiotics are now done and I am holding my breath. They told me that he will just keep re-abcessing in that spot. Does that seem accurate to everyone? If he does get another abcess, are we going to be as lucky this time? I am having a hard time with all this uncertainity. He gets bad headaches on pentasa 3000mg/day. Any one else?
Rachel
mom of Lucas CD Dec./10
Rachel
mom of Lucas CD Dec./10
Rachel, I could swear I'd seen others complain about headaches from Pentasa on here but I did a search and couldn't find any. Maybe you'll have better luck. We haven't dealt with any abcesses so so no help there. Good luck to you and Lucas!!
DustyKat
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Hey Rachel,
Not really sure about the answers to your questions but I'll put my two cents worth in,
.
I don't necessarily think he would keep re-abscessing in the same spot if the area was healed. I have read studies that indicate that drainage is not as effective as surgery in resolving abscesses so maybe that is the school of thought the docs subscribe to.
Headaches are a side effect of Pentasa but we haven't had any experience with that drug at our end. I have read on the forum that Prednisone has caused headaches with some of the members here, is Lucas still on Pred? Just a thought.
I hope things continue to go well with Lucas and the abscess doesn't rear it's ugly head again. Sending you loads of luck and hugs..............:hug::hug::hug:
Keep us posted,
Dusty
Not really sure about the answers to your questions but I'll put my two cents worth in,
.I don't necessarily think he would keep re-abscessing in the same spot if the area was healed. I have read studies that indicate that drainage is not as effective as surgery in resolving abscesses so maybe that is the school of thought the docs subscribe to.
Headaches are a side effect of Pentasa but we haven't had any experience with that drug at our end. I have read on the forum that Prednisone has caused headaches with some of the members here, is Lucas still on Pred? Just a thought.
I hope things continue to go well with Lucas and the abscess doesn't rear it's ugly head again. Sending you loads of luck and hugs..............:hug::hug::hug:
Keep us posted,
Dusty
DustyKat
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Hi Rachel,
How are things going with Lucas?
I thought I would revisit this question since Matt is now in hospital being treated for the same thing. Although I haven't had the opportunity to speak with the Physicians the surgeons have also stated to me that Matt will continue to abscess if he doesn't have surgery. The problem here is Matt may very well have a fistula and he will have a sinogram next week to confirm if that is the case.
If Lucas has a fistula then when the drain is removed he will re abscess. If he doesn't have a fistula then he shouldn't re abscess. Surgery should be based on surgery being needed to remove the fistula or if your GI team feels and you agree that surgery is the best option to bring symptoms under control.
I don't know yet which direction we are headed but I will be asking the Physicians opinions either way. That is if he has a fistula is it feasible that the biologics could heal it without surgery and if he doesn't have a fistula in their opinion are the biologics going to give him a reasonable chance at avoiding surgery.
Hell, I just re read that and I'm not sure it makes sense!!!
Take care,
Dusty
Hi Dusty,
I am so sorry to hear about Matt. Has he had the drain inserted yet? I hope so because the drain helped Lucas with his pain. It is so hard to watch them in that much pain and not be able to do a thing about it. Sending a big hug to both of you and hoping for relief for Matt very soon.
Just saw the surgeon again today. His abcess was on his ilieum so I guess that answers the question of small bowel involvement. Nobody has said anything about a fistula so possibly it is isolated to just one loop? The surgeon is going to leave the question of surgery up to his pediatric GI. And that appointment is next week. I called the specialist about 2 hours away and asked to be put on the cancellation list. I Have an app. in march, but if we can get there sooner...
Lucas is doing sooo much better. He has put on about 15 pounds and has the pred. puffy cheeks that are actually rosy due to the 3 iron supplements we have him on.lol
He is almost symptom free. No nausea, no loose stools, no fever, energy is up. We are weaning down the pred. and his appetite is ENORMOUS! All in all, i am a pretty happy mom right now.
Hoping for a speedy recovery for Matt and strength and courage for mom. I'll say a prayer!
Rachel
I am so sorry to hear about Matt. Has he had the drain inserted yet? I hope so because the drain helped Lucas with his pain. It is so hard to watch them in that much pain and not be able to do a thing about it. Sending a big hug to both of you and hoping for relief for Matt very soon.
Just saw the surgeon again today. His abcess was on his ilieum so I guess that answers the question of small bowel involvement. Nobody has said anything about a fistula so possibly it is isolated to just one loop? The surgeon is going to leave the question of surgery up to his pediatric GI. And that appointment is next week. I called the specialist about 2 hours away and asked to be put on the cancellation list. I Have an app. in march, but if we can get there sooner...
Lucas is doing sooo much better. He has put on about 15 pounds and has the pred. puffy cheeks that are actually rosy due to the 3 iron supplements we have him on.lol
He is almost symptom free. No nausea, no loose stools, no fever, energy is up. We are weaning down the pred. and his appetite is ENORMOUS! All in all, i am a pretty happy mom right now.
Hoping for a speedy recovery for Matt and strength and courage for mom. I'll say a prayer!
Rachel
Hi Dusty,
Wondering how Matt is feeling and how you are holding up? Thinking about you and hoping for a speedy recovery. Lucas is going back to school tomorrow, YIPPEE! We are both a little nervous but a little excited to somewhat get back to normal.
Rachel
Wondering how Matt is feeling and how you are holding up? Thinking about you and hoping for a speedy recovery. Lucas is going back to school tomorrow, YIPPEE! We are both a little nervous but a little excited to somewhat get back to normal.
Rachel
DustyKat
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Hey Rachel and Julie,
Thank you so much for the well wishes. Matt had a pigtail drain inserted last Tuesday and has just now gone off to have his sinogram, it would be wonderful to think he didn't have a fistula! Oh well we will no doubt find out later today.
It is great to hear that Lucas is doing so well and I hope and pray it stays that way for a very long time to come.
Thinking of you guys, :hug:
Dusty
Thank you so much for the well wishes. Matt had a pigtail drain inserted last Tuesday and has just now gone off to have his sinogram, it would be wonderful to think he didn't have a fistula! Oh well we will no doubt find out later today.
It is great to hear that Lucas is doing so well and I hope and pray it stays that way for a very long time to come.
Thinking of you guys, :hug:
Dusty
Well. I spoke too soon. We were off to the hospital last night. Lucas is having pain and vomiting and "tightness" in the area where the abcess was. His white count is up, so that is not a very good sign. We will see his GI today and I suspect another ultrasound. Lucas is so upset. He feels like his body is betraying him. He was so looking forward to getting back to school. And its pretty bad when he would rather suffer the pain then go back to the hospital. Hope Matt's test goes well and you will soon be free of the hospital.
Rachel
Rachel
DustyKat
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Oh man Rachel that sucks.
I don't wish it for Lucas in a million years but his symptoms sound exactly like Matt's. Matt always described having a tightness over his terminal ileum area and this latest admission was due to increased pain and vomiting and his white cell count was elevated. I don't know if you have seen my thread in the general discussion forum...........................
http://www.crohnsforum.com/showthread.php?t=14388
Hoping and praying that it is nothing serious, keep us posted with any news.
The sinogram showed that Matt has a fistula which is what they expected. I will see the Prof this morning and hopefully we will still be going home tomorrow. They don't think the fistula will close on it's own so surgery is looming large and the drain will stay in until then.
Take care, :hug:
Dusty
I don't wish it for Lucas in a million years but his symptoms sound exactly like Matt's. Matt always described having a tightness over his terminal ileum area and this latest admission was due to increased pain and vomiting and his white cell count was elevated. I don't know if you have seen my thread in the general discussion forum...........................
http://www.crohnsforum.com/showthread.php?t=14388
Hoping and praying that it is nothing serious, keep us posted with any news.
The sinogram showed that Matt has a fistula which is what they expected. I will see the Prof this morning and hopefully we will still be going home tomorrow. They don't think the fistula will close on it's own so surgery is looming large and the drain will stay in until then.
Take care, :hug:
Dusty
2nd opinion!
I am so excited. The specialist appointment at the Children's Hospital that was March 10 is tomorrow!! I had called them and asked to be put on a cancellation list and now we go tomorrow. I have spent the last 2 hours putting together a "chart" on Lucas and everything that has been happening. I will keep you posted!
Rachel
I am so excited. The specialist appointment at the Children's Hospital that was March 10 is tomorrow!! I had called them and asked to be put on a cancellation list and now we go tomorrow. I have spent the last 2 hours putting together a "chart" on Lucas and everything that has been happening. I will keep you posted!
Rachel
Well, I'm back. I got alot of good information today and some not so great news. They are not scheduling any surgery for Lucas becasue ,as he put it,"you need SOME healthy colon to attach to each other, and he doesn't have any" Unfortunately, almost all of his large intestine is involved and most of his small so they have nothing to reattach to. If he has to have surgery on an emergency basis, he will have an ostomy..for good. Sooo not the best news but at least now I know. The plan is to manage with pentasa till he flares, then start prednisone, if that doesn't work, we introduce entocort (lovely list of side effects for this one, especially because we lost my dad 3 years ago to lymphoma) or methotrexate. But he is stable now. I have requested that this doctor take over Luc's care since I have lost all faith in the docs here. The doc I saw today said that they are good for about 75% of Crohn's patients but Luc is labelled severe and not a good surgical canditate. Really ****** day today, but I got some answers, just not the ones I was looking for. Thanks for the encouragement, need it today. Hugs!
Rachel
Rachel
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Ohhh (((Rachel)))
I am so sorry it wasn't better news, but you are right - it is good to KNOW. Question - can't they start him on something in addition to the pentasa - 6MP or Remicade or something? Even if he is fairly under control right now, just something stronger to try to avoid further problems since the disease is affecting so much of his colon. Have the doctors suggested any of these?
How is Lucas taking the news?
Sending huge hugs!
I am so sorry it wasn't better news, but you are right - it is good to KNOW. Question - can't they start him on something in addition to the pentasa - 6MP or Remicade or something? Even if he is fairly under control right now, just something stronger to try to avoid further problems since the disease is affecting so much of his colon. Have the doctors suggested any of these?
How is Lucas taking the news?
Sending huge hugs!
Rachel, sorry for Lucas and you. Has he been on pred before? I would think they'd try entocort first and then pred. From what I've read on here, entocort is a milder, safer steroid than the pred.
I agree with Kelly though! It sounds like he has a lot of inflammation so I don't think Pentasa alone will manage it for long. It seems kind of odd to let things come to a head before adding a stronger maintenance med.
I agree with Kelly though! It sounds like he has a lot of inflammation so I don't think Pentasa alone will manage it for long. It seems kind of odd to let things come to a head before adding a stronger maintenance med.
DustyKat
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Whoa Rachel, what a shock! When did this go from being a problem with his ileum to involving most of his large and small bowel??
I hope I don't sound intrusive asking you these questions Rachel but if he has no healthy bowel are they talking inflammation or scar? I'm sorry I'm just confused about what they have said. If it is inflammation then he is flaring and I would have thought due to the amount of bowel involved that he would require something stronger than Pentasa. Oops sorry, have just read Kelly and Dex's posts and it looks like I have just said the same thing!
Thinking of you, :hug:
Dusty
I hope I don't sound intrusive asking you these questions Rachel but if he has no healthy bowel are they talking inflammation or scar? I'm sorry I'm just confused about what they have said. If it is inflammation then he is flaring and I would have thought due to the amount of bowel involved that he would require something stronger than Pentasa. Oops sorry, have just read Kelly and Dex's posts and it looks like I have just said the same thing!
Thinking of you, :hug:
Dusty
Hi all, they are reluctant to use stronger meds because of the side effects. They don't want to start adding new meds if these are still working. He told me when Luc has to be on pred. full time to control, that is when we would add the other meds. And when that stops working they will add the biologics. I think they don't want to exhaust the meds too soon so they having something else to try. His ESR is 66 and his CRP is 241 so there is LOTS of inflammation. Just trying to wrap my head around this right now. How can he be so bad is such a short period? They figure he had CD for about 2-3 years before diagnosis. Dusty, we knew from his colonoscopy that he had alot of colon was involved, the shock for me was his ilieum. I guess I just didn't realize how much was inviolved because it was never explained, yesterday it was explained with drawings and diagrams. The scary part is, I almost LET them operate. I am not sure Lucas gets it, but I really don`t have the heart to sit him down right now. I couldn`t do it without crying right now anyway. Thanks for all your support, I could use it right now.
Rachel
Rachel
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Rachel - I'm glad you feel better with this doc. Having some confidence in the course, is half the battle. I would probably make yourself a list for the next visit to ask some of the medication questions that your online friends are raising. Long term prednisone use, in my understanding, isn't a great plan for kids - or at least that's what I have heard from the two ped GIs we have seen.
I'm hoping everything will settle down for him and you can just manage on Pentasa. But it will be good to be prepared should something change.
:ghug:
Hugs,
I'm hoping everything will settle down for him and you can just manage on Pentasa. But it will be good to be prepared should something change.
:ghug:
Hugs,
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I can certainly understand being reluctant because of the side effects! It really, really freaked me out initially. My question would be though - if his CRP is 241 and so much of his colon is so inflamed, then do the doctors actually consider that 'in control'?
The first GI Ant saw didn't put him on any medications other than pred (intermittently) for the first 3 months. Once we got to Mt. Sinai, the doctors there told me that they really wished the first GI had reacted sooner and put him on meds because it might not have gotten to the point that surgical intervention was needed. They felt that when the stricture was found and was diagnosed with Crohns, he should have been on 6MP. That was still their opinion, even after surgery. Unfortunately I can't undo the time wasted with the other doctor, but I am confident we are in good (great!) hands now.
Of course, every case is different. I really hope that the Pentasa helps Lucas and the inflammation reduces!!
When does Lucas have his next appt?
The first GI Ant saw didn't put him on any medications other than pred (intermittently) for the first 3 months. Once we got to Mt. Sinai, the doctors there told me that they really wished the first GI had reacted sooner and put him on meds because it might not have gotten to the point that surgical intervention was needed. They felt that when the stricture was found and was diagnosed with Crohns, he should have been on 6MP. That was still their opinion, even after surgery. Unfortunately I can't undo the time wasted with the other doctor, but I am confident we are in good (great!) hands now.
Of course, every case is different. I really hope that the Pentasa helps Lucas and the inflammation reduces!!
When does Lucas have his next appt?
He had more labs done yesterday,241 was last reading. He has been off pred. since tues. and so far so good. I am spinning right now and kind of understand this doc wanting to wait. He's good right now. I think the abscess was brewing before he was even diagnosed since it only happened a week after diagnosis, but of course you don't think to ask that question right? At least i didn't. The doc told me that if anything starts to happen, start him on pred 20 mg and then wean down. If there comes a point when he can't come off the pred without a flare, then we would add more. He has only had one round of pred. since its such a new diagnosis. The plan seemed reasonable yesterday...but now? Is it possible for him to go into a remission from pentasa? I go back in 6 weeks unless something happens before then. I think I just need a couple days to absorb this. Thanks everyone!
Rachel
Rachel
Rachel, EJ had about two months of bloody d that stopped very quickly after being put on Asacol which is the same med as Pentasa. Our GI still insisted on the pred taper though. I almost wish we'd have had another scope before starting the pred but he didn't suffer any long term effects with it. I hope Lucas doesn't become dependent on pred to stay in remission. It seems like all these GI's have different theories about treatments. Ours wanted 6mp immediately after EJ's pred taper and has now prescribed Humira. It sure is a lot to think about though Rachel!! Good luck!!
DustyKat
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Hey Rachel,
It gets to a point where it's just all too much to take on board doesn't it? :hug:
I would say the abscess was there before diagnosis especially in view of the fact that the docs have suggested that the disease has been present for 2 - 3 years.
I have never dealt with Pentasa but my understanding is that is for mild to moderate crohns. In view of Luc's disease progression, his CRP and the docs themselves saying he has severe crohns I personally don't think Pentasa on it's own will do the job. I hope my thinking is wrong!
It's good to hear that you are happy with the new docs 'cause having faith and trust in your doctor is such a major part of the package.
I hope all works well for Luc Rachel and this new plan is just the ticket to get him into remission. Good luck and keep us posted!
Thinking of you, hug:
Dusty
It gets to a point where it's just all too much to take on board doesn't it? :hug:
I would say the abscess was there before diagnosis especially in view of the fact that the docs have suggested that the disease has been present for 2 - 3 years.
I have never dealt with Pentasa but my understanding is that is for mild to moderate crohns. In view of Luc's disease progression, his CRP and the docs themselves saying he has severe crohns I personally don't think Pentasa on it's own will do the job. I hope my thinking is wrong!
It's good to hear that you are happy with the new docs 'cause having faith and trust in your doctor is such a major part of the package.
I hope all works well for Luc Rachel and this new plan is just the ticket to get him into remission. Good luck and keep us posted!
Thinking of you, hug:
Dusty
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Terminology help please?
Hello, my name is Lorraine. My 19 year old son was newly diagnosed on 25th January 2011. The diagnosis came after he spect 10 days in hospital very unwell. He is home now and responding well to Pentassa, he is on 4g a day.
I was just wishing to undersatnd some terms I see used here please...Such as CRP?...I think this is relating to inflammation? My son's was 376 when admitted to hospital...It was 50 when he was discharged.
Also, when I see 6MP relating to meds...what medication is this please?
Thank you for any help...warm regards, Lorrainex
Hello, my name is Lorraine. My 19 year old son was newly diagnosed on 25th January 2011. The diagnosis came after he spect 10 days in hospital very unwell. He is home now and responding well to Pentassa, he is on 4g a day.
I was just wishing to undersatnd some terms I see used here please...Such as CRP?...I think this is relating to inflammation? My son's was 376 when admitted to hospital...It was 50 when he was discharged.
Also, when I see 6MP relating to meds...what medication is this please?
Thank you for any help...warm regards, Lorrainex
DustyKat
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Hi Lorraine and :welcome:
I'm sorry to hear about your son but relieved to hear he is responding well to treatment.
CRP is C Reactive Protein. It is a marker of acute inflammation and is used by doctors initially to ascertain if inflammation is present and later as a way of establishing how well the patient is responding to treatment.
6MP is Mercaptopurine and it is an immunosuppressive drug. Pentasa is a 5 - ASA and these type of drugs are usually used to treat mild to moderate IBD, immunosuppressives are generally the next step up if the 5 - ASA's don't work. Often GI's prescribe these two types of drugs together if they feel it is warranted.
Good luck and welcome aboard!
Dusty.
I'm sorry to hear about your son but relieved to hear he is responding well to treatment.
CRP is C Reactive Protein. It is a marker of acute inflammation and is used by doctors initially to ascertain if inflammation is present and later as a way of establishing how well the patient is responding to treatment.
6MP is Mercaptopurine and it is an immunosuppressive drug. Pentasa is a 5 - ASA and these type of drugs are usually used to treat mild to moderate IBD, immunosuppressives are generally the next step up if the 5 - ASA's don't work. Often GI's prescribe these two types of drugs together if they feel it is warranted.
Good luck and welcome aboard!
Dusty.
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Thank you for the warm welcome Dusty!
I understand now, thank you, that is a great help!
Yes, on my son's endoscopy report it says Modertate/Intermidiate Crohns?
Again, some things are difficult to understand being so new to this!...May I also ask, was my son's CRP of 376 be considered to be very high?...I am sure the Dr said that the 'Normal' range is around 10/20?
Thank you again! Lorraine
I understand now, thank you, that is a great help!
Yes, on my son's endoscopy report it says Modertate/Intermidiate Crohns?
Again, some things are difficult to understand being so new to this!...May I also ask, was my son's CRP of 376 be considered to be very high?...I am sure the Dr said that the 'Normal' range is around 10/20?
Thank you again!
Lorraine
DustyKat
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Do you know where in his upper GI tract it is located?
Usually when they use the term intermediate it means it is between two phases. So he may have moderate areas and perhaps some areas are going from mild to moderate, you would need to speak to the GI about that.
Reference ranges for CRP can vary between pathology companies but mostly I see <6 or <10 as a normal reading. Is 376 high? You bet it is!
Dusty.
Usually when they use the term intermediate it means it is between two phases. So he may have moderate areas and perhaps some areas are going from mild to moderate, you would need to speak to the GI about that.
Reference ranges for CRP can vary between pathology companies but mostly I see <6 or <10 as a normal reading. Is 376 high? You bet it is!
Dusty.
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I am unsure about where in his GI tract it is located?...But he had the Endoscopy that just done the first part of the bowel, he did'nt have a full colonoscopy. However, they said that Ulcers could be seen just further on? And that they will be bringing him back to have a full colonoscopy very soon.
Thank you so much for all your help and answers Dusty, this is all so scary and I really was terrified that I was going to lose my Son when he was in hospital, he was so very ill...He did'nt look like my son, he looked so frail. Once they diagnosed him and began the Pentassa, he was much better within days! I pray that things stay this way, but, from what I have read here I realise that he may have some journey ahead of him.
You all sound so brave, it takes so much out of you when it is your child that is unwell. Physically, my son has never really been unwell, of course until now! However, he has had complex Mental health issues for many years. He suffers with severe anxiety and, when he went into hospital it was only his second time out of the house in 3 years...It was very distressing for him.
He is under the care of a Care Coordinator, for his mental health, but, he finds it difficult to engage with most people he does not know. I guess that is something we will continue to cope with...But now this, well, I feel myself so anxious about him all the time.
Oh, I'm rambling now!!...Thank you again, I really appretiate your help and warm welcome
Lorraine
Thank you so much for all your help and answers Dusty, this is all so scary and I really was terrified that I was going to lose my Son when he was in hospital, he was so very ill...He did'nt look like my son, he looked so frail. Once they diagnosed him and began the Pentassa, he was much better within days! I pray that things stay this way, but, from what I have read here I realise that he may have some journey ahead of him.
You all sound so brave, it takes so much out of you when it is your child that is unwell. Physically, my son has never really been unwell, of course until now! However, he has had complex Mental health issues for many years. He suffers with severe anxiety and, when he went into hospital it was only his second time out of the house in 3 years...It was very distressing for him.
He is under the care of a Care Coordinator, for his mental health, but, he finds it difficult to engage with most people he does not know. I guess that is something we will continue to cope with...But now this, well, I feel myself so anxious about him all the time.
Oh, I'm rambling now!!...Thank you again, I really appretiate your help and warm welcome
Lorraine
Sooo, another stumper. Lucas asked me out of the blue"what happens if I don't want to take the drug that will give me cancer" I knew he would pick that one up right away, as we have had ALOT of family members die from cancer in the past 4 years. So I tried to gently explain that he will need these drugs to control his CD, his response "so if I don't take the drugs Crohn's kills me and if I do take the drug, cancer will kill me" I tried to reassure him that the chances are so slim and they just have to tell everyone that, etc.. No dice. Never in a million years did I think I would ever hear that from my own child. I guess he "got it" at the appointment. Any tips?
Thanks,
Rachel
Thanks,
Rachel
DustyKat
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Whoa, this is a hard one.
I'm not sure what to say, how do convince someone that one risk far outweighs another. As his mother you can continue to do just what you have, trying to put it into perspective for him. All this is very new to him and no doubt scary as hell for him as it is for you all. By voicing his concern and frustration does it mean that he is not going to take the medication at all or is it that he is stating the facts as he sees it - I'm going to take the medication but this whole thing sucks?
I think if it reaches the point that he doesn't want to take mediacation then I would pursue futher assistance via having the GI speak with him and perhaps youth counselling through the hospital to try and help him deal with his diagnosis.
It's so hard being on the sideline watching our kids suffer and struggle. I hate that my children are taking more medication than I have in my entire life! But I also saw what certain types of undiagnosed and untreated crohns can do, we came within 24 hours of Roo not being here.
I wish I could be of more help hun.
Dusty. :hug:
I'm not sure what to say, how do convince someone that one risk far outweighs another. As his mother you can continue to do just what you have, trying to put it into perspective for him. All this is very new to him and no doubt scary as hell for him as it is for you all. By voicing his concern and frustration does it mean that he is not going to take the medication at all or is it that he is stating the facts as he sees it - I'm going to take the medication but this whole thing sucks?
I think if it reaches the point that he doesn't want to take mediacation then I would pursue futher assistance via having the GI speak with him and perhaps youth counselling through the hospital to try and help him deal with his diagnosis.
It's so hard being on the sideline watching our kids suffer and struggle. I hate that my children are taking more medication than I have in my entire life! But I also saw what certain types of undiagnosed and untreated crohns can do, we came within 24 hours of Roo not being here.
I wish I could be of more help hun.
Dusty. :hug:
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(((Rachel))) Sigh ... I don't know how to answer those questions. Anthony is aware there are side effects, some that can be severe, to the drugs, but that they are not the norm. He is not aware of what the exact side effects are ... I don't think we ever discussed that. Ugh, hugs hugs hugs. I wish I could offer some help. I am sure the fact that Lucas is old enough to understand and that you have lost family members and this is fresh in his mind makes it that much harder. I guess the only thing I can think of is that without the medication, most definitely the Crohns will get worse - with it, the odds of getting cancer is such a small percentage so overall, the better chance is with the drugs.
Gee ... seems like in a short few months both of our lives have drastically changed! I never would have thought I would be discussing medications, surgeries, odds like this.
Sorry to hear Lucas is back on the Pred today. Let us know what the docs say!!!
*****************************************************
Lorraine - Welcome to the board! Sorry you are here, but glad you found us (if you know what I mean!) Isn't Dusty fantastic? I don't have anything to add ... other than, you might want to start a separate post about your son/concerns so more people can see. Glad his CRP decreased so much - that is great!
Gee ... seems like in a short few months both of our lives have drastically changed! I never would have thought I would be discussing medications, surgeries, odds like this.
Sorry to hear Lucas is back on the Pred today. Let us know what the docs say!!!
*****************************************************
Lorraine - Welcome to the board! Sorry you are here, but glad you found us (if you know what I mean!) Isn't Dusty fantastic?
I don't have anything to add ... other than, you might want to start a separate post about your son/concerns so more people can see. Glad his CRP decreased so much - that is great!Hi Kelly,
Well I spoke with the specialist and let them know he is back on pred and they told me if he is not better by thurs. that I need to call back and possibly return. i also read the report he sent from Luc's consultation. He doesn 't think pentasa is strong enough either but he was willing to try to see if it would work. He wants him on Imuran but he saw from Luc's reaction that we needed time to absorb. I work for a doc who has had IBD (ulcerative colitis) and has a colostomy(since 1972) and he is awesome and answers all my questions. Lucas has been complaining of numbness in his fingertips for a couple days now and Doc told me that it is a sign of b12 defiency because of his terminal ilieum involvement. Who knew? So we will be starting him on b12 injections asap. Lucas also started a new semester at school, so another round of teacher's to educate. His 2nd period teacher denied his request to go to the bathroom today. FRUSTRATING!!!! Especially because I took the time to write up a report for the school and asked that it be distributed to his teachers. Another call to the school. I am not sure how I am doing. It feels like I have a strong outer shell that does what has to be done but I am falling apart inside. It will take time I guess. In the mean time, I fake it!
How's Ant doing? Amazing how quickly they bounce back isn't it? Hope this surgery will give Ant years of remission. And how is mom doing? Hope you are holding up and work and home are good for you. I will let you know what the doctor says on thursday.
Rachel
Well I spoke with the specialist and let them know he is back on pred and they told me if he is not better by thurs. that I need to call back and possibly return. i also read the report he sent from Luc's consultation. He doesn 't think pentasa is strong enough either but he was willing to try to see if it would work. He wants him on Imuran but he saw from Luc's reaction that we needed time to absorb. I work for a doc who has had IBD (ulcerative colitis) and has a colostomy(since 1972) and he is awesome and answers all my questions. Lucas has been complaining of numbness in his fingertips for a couple days now and Doc told me that it is a sign of b12 defiency because of his terminal ilieum involvement. Who knew? So we will be starting him on b12 injections asap. Lucas also started a new semester at school, so another round of teacher's to educate. His 2nd period teacher denied his request to go to the bathroom today. FRUSTRATING!!!! Especially because I took the time to write up a report for the school and asked that it be distributed to his teachers. Another call to the school. I am not sure how I am doing. It feels like I have a strong outer shell that does what has to be done but I am falling apart inside. It will take time I guess. In the mean time, I fake it!
How's Ant doing? Amazing how quickly they bounce back isn't it? Hope this surgery will give Ant years of remission. And how is mom doing? Hope you are holding up and work and home are good for you. I will let you know what the doctor says on thursday.
Rachel
DustyKat
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Hey Rachel,
Egads!!! I hope the school is getting it's act together!!!
How is Luc handling the meds situation?
You are doing a fab job Rachel so hang in there hun! Hey I know you will it's just that some days you wonder how the hell you are going to make it ay? But we do 'cause as you say we fake it!
I will be waiting to hear how the appointment goes.
Thinking of you, :hug:
Dusty
Egads!!! I hope the school is getting it's act together!!!
How is Luc handling the meds situation?
You are doing a fab job Rachel so hang in there hun! Hey I know you will it's just that some days you wonder how the hell you are going to make it ay? But we do 'cause as you say we fake it!
I will be waiting to hear how the appointment goes.
Thinking of you, :hug:
Dusty
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I am new here & the mother of 4 boys. The 23 year old has CD & his wife has UC. The 21 year old has IBS, & the 12 year old was just DX with CD 10/2010.
I have some input for "radchic" & the problems with school as my 12 year old son Daniel has had many issues with bathroom visits in school & teachers. I was able to have some discussions with his teachers in person & explain what was going on from before DX & through DX. The Dr. from before he was DX wrote a note to give him special bathroom privileges in school specifically explaining that he has a condition (now DX with a disease) that causes him urgency & frequency. To be able to use the bathroom without wait when ever needed without asking as waiting could cause uncontrollable accidents if made to wait. With that being said & done for my son we still had issues with Substitute teachers. As Daniel dose not like to be "different" from the other students. He still follows the same rules of asking (although the teachers said he doesn't have to even ask just go right away). So in brainstorming with the teachers how could we let the Subs know that he had an issue without making a big issue in front of the other students every time their was a new Sub by having to show them the note EVERY time! They have a Sub folder that has it in Big Bold Red Print right on top of every Teachers Sub folder so that it is the first thing the Sub sees when opening the folder. Well it only works if they read it. So one day a sub wouldn't let him go cuz he had to wait for the other student to come back from the bathroom. When he finally got to go (no accident thank goodness) & when he came back he showed that Sub the Dr's note. He said she cried & felt real horrible about what she had done. Lesson learned for her! But in all that explanation are some things we did to help him through it all. Communication may have to go further to get the point across. But keeping a cool head while seething inside was the key to being heard in his school. It wasn't easy & took some time but I was quick & diligent in my efforts! They need to know that not only are those things big issues also is the fatigue, pain, & nausea that can happen too. It makes concentrating on school work hard.
Well I hope that helps & sorry for the soapbox but they are our children & adults tend not to believe they have these problems. Look how long it has taken some of them to DX by adults (Dr's). I really hope this helps!!!
I have some input for "radchic" & the problems with school as my 12 year old son Daniel has had many issues with bathroom visits in school & teachers. I was able to have some discussions with his teachers in person & explain what was going on from before DX & through DX. The Dr. from before he was DX wrote a note to give him special bathroom privileges in school specifically explaining that he has a condition (now DX with a disease) that causes him urgency & frequency. To be able to use the bathroom without wait when ever needed without asking as waiting could cause uncontrollable accidents if made to wait. With that being said & done for my son we still had issues with Substitute teachers. As Daniel dose not like to be "different" from the other students. He still follows the same rules of asking (although the teachers said he doesn't have to even ask just go right away). So in brainstorming with the teachers how could we let the Subs know that he had an issue without making a big issue in front of the other students every time their was a new Sub by having to show them the note EVERY time! They have a Sub folder that has it in Big Bold Red Print right on top of every Teachers Sub folder so that it is the first thing the Sub sees when opening the folder. Well it only works if they read it. So one day a sub wouldn't let him go cuz he had to wait for the other student to come back from the bathroom. When he finally got to go (no accident thank goodness) & when he came back he showed that Sub the Dr's note. He said she cried & felt real horrible about what she had done. Lesson learned for her! But in all that explanation are some things we did to help him through it all. Communication may have to go further to get the point across. But keeping a cool head while seething inside was the key to being heard in his school. It wasn't easy & took some time but I was quick & diligent in my efforts! They need to know that not only are those things big issues also is the fatigue, pain, & nausea that can happen too. It makes concentrating on school work hard.
Well I hope that helps & sorry for the soapbox but they are our children & adults tend not to believe they have these problems. Look how long it has taken some of them to DX by adults (Dr's). I really hope this helps!!!
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Dexky, I guess I know some but my oldest son was just about on his own. In fact he graduated college months after his surgery & DX with CD & moved in with his then gf now wife. They lived 4 hours away from us so she could finish her school. Anyway she went to school to become an RN & got DX with UC along the way. It was really hard for the 2 of them but as her being a nurse the 2 of them research a lot & know a lot. With Daniel being so young there are some different issues. I guess now it is his issue with the nausea & the pain. It has gotten a little better over the last few days. With him he loves food a LOT....can or I should say could eat a lot. But over the last year there have been things that he has had trouble with. So by process of elimination would avoid those foods as best he can. Now the list is growing to the point of not being able to tolerate much. It's happened so fast. It so frustrating. There is no vomiting ..... well we had some bug not sure though..... last month just after Christmas vacation & he was having high fevers & nausea & vomiting. It was when the C-diff came back. Then he got better, the blood tests got better & better. But the pain, nausea, & frequent stools are back. I am confused do I push getting more testing done. The Dr. has taken him off milk & milk products & put him on small doses of benefiber to help bulk the stools to solidify them. It has slowed them down a little & not as much pain. WE DID HAVE STRICT INSTRUCTIONS ON HOW TO DO THIS & TO CALL RIGHT AWAY IF DOUBLED OVER WITH PAIN OR VOMITING!!! If this didn't work he said he would do another round of TOP & BOTTOM scopes & CT again. I guess a little more wait & see for him feeling better. His SAID rate is normal now & was never really high 24. He had serium sickness when he was 4 from an antibiotic & the SAID rate was 84 so I know how sick he is when it gets real high. But then last month he was close to being put in the hospital! If he has a better tolerance for pain how do you know! SIGH.....frustration! Again thanks for the welcome it's no fun no matter what your going through. I see & hear how bad it can get.
Hi mom and welcome but sorry your here. Dusty suggested to me that I write up a report for the school and explain his disease, his medication, his sideeffects,etc. She even sent me a copy of her's. She is fantastic and very knowledgable. The issue is, he is in a semster high school and gets 4 new teachers every 3 months. I am working with his guidance counsellor and he was supposed to give the new teacher's my report, but forgot. I spoke with him the next day, and he apologized and talked to the teachers, so hopefully I;m ok for the next 3 months lol. Good news, Luc's labs are back from tues. and his CRP is WAY down and his ESR is almost normal. YIPPEE!!!! I hate that he is on pred but can't deny the quick results...waiting to hear back from specialist, but no news is good news,right? His iron is pretty low but what else is new? I'm pretty sure we will be going with the Imuran shortly, Lucas is adjusting to the idea. Kelly, how's Ant doing? Dusty, is Matt's drain still in place? Dex, have you started the new meds yet? Hope everyone is good.
Rachel
Rachel
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Hah, Rachel, your thread has become kind of busy!! We haven't started humira yet. I don't know what they are waiting on. We had to get the 6mp scrip filled again so we're just waiting to hear from them.
Luc's blood works sound great!!! Has he started to taper yet? I know he's concerned about the Imuran but, for my thinking anyway, the pred. was much scarier!! It did do a quick number on EJ's symptoms though.
^^MomofIBD's^^, what meds is Daniel taking or has taken? Did he do a pred taper last fall? Since he has already been dxed, I would push to find out what's going on! His meds may need to be adjusted or there could be other problems that should be attended to before they can progress. Good luck to you!
Luc's blood works sound great!!! Has he started to taper yet? I know he's concerned about the Imuran but, for my thinking anyway, the pred. was much scarier!! It did do a quick number on EJ's symptoms though
. ^^MomofIBD's^^, what meds is Daniel taking or has taken? Did he do a pred taper last fall? Since he has already been dxed, I would push to find out what's going on! His meds may need to be adjusted or there could be other problems that should be attended to before they can progress. Good luck to you!
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Hello Rachel, I have not been ignoring Your & Mark's responses. But every time I try to reply a big long post I get sent to HYPER SPACE! So I am gonna post real quick & then come in with a longer post & answer you! Here goes.... I hope something! LOL! Maybe 4th times a charm!
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Yeah I did it at least that much!
Rachel I sure hope the next teacher change over goes smooth sailing! Unfortunately I think our children have to pay for the sins of those that went before them! Right or NOT....it happens & it's not right. But it's up to us to show those teachers that not ALL kids are out to pull a fast one!
Mark I am gonna try this one more time..... = )
He started on....
Pentasa 2 500 mg tabs 2X's a day
Prednisone 60mg start tapering ended Christmas day.
Flagyl 500mg 3X's a day. Stopped after 1 1/2 months due to hand tremors.
Omeprazole 20 mg once a day.
Hydrocortisone ointment 2.5% 4 X's a day for Fissures
Vancomycin 125 mg 4 x's a day for 2 weeks in December for C-diff.
Vancomycin 125 mg for C-diff again in January descending dose 2 end time around will be about 4 months on it.
Florastor 500mg 2 X's a day from December on. Due to the Cost of $120 out of pocket we just started ....
Saccharomyses Boulardii+MOS 2 pills twice daily.
So now he is taking....
Vancomycin for another 2 months
Pentasa 1000 mg 2 X's a day
Omepro. 40 mg once a day it got increased a month ago due to chest & stomach pain.
Zantac 300 mg at bedtime for the same pain in chest & stomach.
Probiotic 2 tabs twice daily
Multivitamin daily
Vitafusion calcium & D3 gummy
I think thats it. Everyone in our house is on Meds for one thing or another! I feel like a Pharm Tech! It takes about a 1/2 hour or more to sort the meds out into weekly dispensers for my boys & I. DH has to take care of his own meds! ; )-
Rachel I sure hope the next teacher change over goes smooth sailing! Unfortunately I think our children have to pay for the sins of those that went before them! Right or NOT....it happens & it's not right. But it's up to us to show those teachers that not ALL kids are out to pull a fast one!
Mark I am gonna try this one more time..... = )
He started on....
Pentasa 2 500 mg tabs 2X's a day
Prednisone 60mg start tapering ended Christmas day.
Flagyl 500mg 3X's a day. Stopped after 1 1/2 months due to hand tremors.
Omeprazole 20 mg once a day.
Hydrocortisone ointment 2.5% 4 X's a day for Fissures
Vancomycin 125 mg 4 x's a day for 2 weeks in December for C-diff.
Vancomycin 125 mg for C-diff again in January descending dose 2 end time around will be about 4 months on it.
Florastor 500mg 2 X's a day from December on. Due to the Cost of $120 out of pocket we just started ....
Saccharomyses Boulardii+MOS 2 pills twice daily.
So now he is taking....
Vancomycin for another 2 months
Pentasa 1000 mg 2 X's a day
Omepro. 40 mg once a day it got increased a month ago due to chest & stomach pain.
Zantac 300 mg at bedtime for the same pain in chest & stomach.
Probiotic 2 tabs twice daily
Multivitamin daily
Vitafusion calcium & D3 gummy
I think thats it. Everyone in our house is on Meds for one thing or another! I feel like a Pharm Tech! It takes about a 1/2 hour or more to sort the meds out into weekly dispensers for my boys & I. DH has to take care of his own meds! ; )-
DustyKat
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Hey Rachel,
I hope things are continuing to go well with Luc!
Yeah Matt still has his drain in, it's supposed to stay in until he is reviewed and maybe even till he has his op. Matt is having up and down days and the GP will be onto the GI again today to discuss ongoing treatment.
I just spoke with the GI's secretary and I think I shouldn't ring when I have just come off night shift, the woman was an idiot so I told her the GP will ring the Prof, well that amongst a host of other things, :eek2:.....Argh! :ylol:
Keep us posted and remember Rachel you are doing a fab job!!!
Loads of love, :hug:
Dusty
I hope things are continuing to go well with Luc!
Yeah Matt still has his drain in, it's supposed to stay in until he is reviewed and maybe even till he has his op. Matt is having up and down days and the GP will be onto the GI again today to discuss ongoing treatment.
I just spoke with the GI's secretary and I think I shouldn't ring when I have just come off night shift, the woman was an idiot so I told her the GP will ring the Prof, well that amongst a host of other things, :eek2:.....Argh! :ylol:
Keep us posted and remember Rachel you are doing a fab job!!!
Loads of love, :hug:
Dusty
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Rachel!!! Sorry I have been MIA for a few days ... a much-needed nice long weekend!
Soooo glad to hear Luc's numbers came down with the pred! What is the next step - the Imuran? That must be frustrating to deal with the different teachers EACH semester! It is February and I feel like I FINALLY just got through to his teachers about CD (since September!) and I think that is only because the month out of school for surgery was their wake up call, lol.
Will post an update on Ant's thread.
Hugs!
Soooo glad to hear Luc's numbers came down with the pred! What is the next step - the Imuran? That must be frustrating to deal with the different teachers EACH semester! It is February and I feel like I FINALLY just got through to his teachers about CD (since September!) and I think that is only because the month out of school for surgery was their wake up call, lol.
Will post an update on Ant's thread.
Hugs!
Hi Dusty,
Still on pred but tapering. I faxed his most recent labs to his doc but haven't heard anything back, so, no news is good news,right? We are just laying low right now until our next appointment. How's things with you? How's Matt feeling? Any word on a surgery date?
Rachel
Still on pred but tapering. I faxed his most recent labs to his doc but haven't heard anything back, so, no news is good news,right? We are just laying low right now until our next appointment. How's things with you? How's Matt feeling? Any word on a surgery date?
Rachel
DustyKat
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Hey Rachel,
Sounds like a plan to me! Yeah, I reckon no news is good news.
Matt's still chuggin' along. He's on a bit of a downer at present, sick to death of feeling tired and sick of the drain, poor kid. We are of to Sydney next Monday, 7th March, to consult with the colorectal surgeon and gastroenterologist so we will know more then.
Take c are hun and I hope Luc continues to do well.
Thinking of you guys, :hug:
Dusty
Sounds like a plan to me!
Yeah, I reckon no news is good news. Matt's still chuggin' along. He's on a bit of a downer at present, sick to death of feeling tired and sick of the drain, poor kid. We are of to Sydney next Monday, 7th March, to consult with the colorectal surgeon and gastroenterologist so we will know more then.
Take c are hun and I hope Luc continues to do well.
Thinking of you guys, :hug:
Dusty
Hi all,
Well we started Imuran today. His pred taper did not go well, and he has not been feeling well at all. ******, because it was his 16th birthday yesterday and he was in bed by 6:30. I know this is the best thing for him right now, but man, am I struggling today. Does 125 mg a day seem like alot? He is only 150 lbs(thanks to the pred). I guess I'm just a little freaked out right now. Thanks for listening.
Rachel
Well we started Imuran today. His pred taper did not go well, and he has not been feeling well at all. ******, because it was his 16th birthday yesterday and he was in bed by 6:30. I know this is the best thing for him right now, but man, am I struggling today. Does 125 mg a day seem like alot? He is only 150 lbs(thanks to the pred). I guess I'm just a little freaked out right now. Thanks for listening.
Rachel
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Hey Rachel - I know the dose is typically calculated by weight so I'm sure it is correct. I have seen adults (and he's the size of one! ) on higher doses. Is he still weaning the prednisone?
When Claire started 6MP, we did a long slow wean of the prednisone because it took awhile to "kick in" (for lack of a better word). Is Luc still taking any at all?
I sure am sorry he felt crappy for his birthday.....love his heart.
Thinking of y'all,
) on higher doses. Is he still weaning the prednisone?When Claire started 6MP, we did a long slow wean of the prednisone because it took awhile to "kick in" (for lack of a better word). Is Luc still taking any at all?
I sure am sorry he felt crappy for his birthday.....love his heart.
Thinking of y'all,
DustyKat
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Hey Rachel,
I am so, so sorry to read this.
I hear you hun with the way you are feeling, it's just so heartbreaking isn't it? Hell he's 16 he shouldn't be going through all this crap and what we wouldn't give to change places with them.
125mg is just right. The dose in normally calculated as 2mg per kilo. I put Luc at about 68 kilos so yeah 125mg is good.
How long has he been off the pred? I know a lot of folk here feel crap for the first little while when coming of it. I wonder if it could be that, the body readjusting.
Thinking of you, :hug:
Dusty
I am so, so sorry to read this.
I hear you hun with the way you are feeling, it's just so heartbreaking isn't it? Hell he's 16 he shouldn't be going through all this crap and what we wouldn't give to change places with them.
125mg is just right. The dose in normally calculated as 2mg per kilo. I put Luc at about 68 kilos so yeah 125mg is good.
How long has he been off the pred? I know a lot of folk here feel crap for the first little while when coming of it. I wonder if it could be that, the body readjusting.
Thinking of you, :hug:
Dusty
The thing is he hasn't been off pred. We got 4 days pred free and then right back on it. We were down to 10 mg but he told me he hasn't felt well since 20 mg...so we are back up to 20 mg for a while. We were told that it takes 3 months for this drug to kick in so i imagine we will be on pred for at least that long. I feel so helpless and in turn frustrated, but I know you all know that feeling. Thanks.
Rachel
Rachel
DustyKat
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Okay me thinking out loud here.......
Going back through the thread you mentioned early on that the docs said he would just keep re abscessing. To me this implies that he has a fistula and if this is the case I don't see how he can improve with an abscess festering away. I wondered why Matt's path has been so rocky and I do believe it is the fistula/abscess combination. All the Pred will do is mask the symptoms until you reduce and BANG it all comes back again or in Matt's case it becomes bigger and more troublesome than the Pred can hide.
If he has an abscess no medication is going to treat it. Do you think this is a possibility??
Dusty. :hug:
Going back through the thread you mentioned early on that the docs said he would just keep re abscessing. To me this implies that he has a fistula and if this is the case I don't see how he can improve with an abscess festering away. I wondered why Matt's path has been so rocky and I do believe it is the fistula/abscess combination. All the Pred will do is mask the symptoms until you reduce and BANG it all comes back again or in Matt's case it becomes bigger and more troublesome than the Pred can hide.
If he has an abscess no medication is going to treat it. Do you think this is a possibility??
Dusty. :hug:
This was the opinion of the surgeon who inserted the drain. The one who later admitted that he was unfamiliar with the disease or pediatric management of the disease. He actually told us that. Apparently, he had not looked at Luc's colonoscopy report. Fistula has not been mentioned but he has no pain when he tapers just urgency and multiple trips to the bathroom. He doesn't have any tightness in that area, so I'm hoping that we can avoid a further abscess. Honestly, anything is possible at this point right? I sure hope not, I really want to avoid a colostomy.
Rachel
Rachel
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Dusty (as usual) has great thoughts. I would just also mention on the pred that when we finally did wean. We went 5mg at a time, not 10. We found that jumping 10mg at a time led to her feeling bad.
I would definitely ask questions about abscess/fistula possibilities. And then when you are ready to wean, try to slow it a little and maybe he won't feel such a "crash". Sweet baby..... (No matter how old they are, they are our babies!)
I hope I'm not muddying your water! Just some thoughts.....
Hugs,
I would definitely ask questions about abscess/fistula possibilities. And then when you are ready to wean, try to slow it a little and maybe he won't feel such a "crash". Sweet baby..... (No matter how old they are, they are our babies!)
I hope I'm not muddying your water! Just some thoughts.....
Hugs,
DustyKat
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If surgery was required, heaven forbid, did they mention temporary stoma or permanent only?
What is the highest dose of Prednisone that Luc has been on and for how long?
If at any point you were looking at getting another opinion I would probably move away from the Paeds and onto adult GI's.
Sorry about all the questions Rachel and I hope I'm not stressing you out even further by chucking my two cents worth in all the time!
Dusty. :hug:
What is the highest dose of Prednisone that Luc has been on and for how long?
If at any point you were looking at getting another opinion I would probably move away from the Paeds and onto adult GI's.
Sorry about all the questions Rachel and I hope I'm not stressing you out even further by chucking my two cents worth in all the time!
Dusty. :hug:
Julie, we were weaning 5 at a time but he hasn't been feeling well for a couple weeks but didn't think to mention it. Boys! Dusty, all but 50 cm of his large colon is involved. The last 50 cm. Of course his abscess was in his terminal ilieum. So to cut out the abscess they need healthy colon to resect to, he doesn,t have enough, not even close. This specialist drew Lucas a picture of his intestinal tract and shaded in all that is involved, it was horrifying! Questions help me sort it out in my head, so no worries about that.
Rachel
Rachel
Hey Rachel, just catching up. Sorry to hear Lucs pred taper has not gone well. Hopefully in time the Imuran will kick in and he can avoid surgery.
Dusty and Julie are so insightful! I'm just a cheerleader! Never apologize for your questions or thoughts ladies!! That's what we're here for!
Dusty and Julie are so insightful! I'm just a cheerleader! Never apologize for your questions or thoughts ladies!! That's what we're here for!
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Sorry Rachel, just catching up here.
First, Happy 16th Birthday to Lucas!!!!!!!! He will have to have a little late celebration when he is feeling better.
I am sooooo sorry to hear that Lucas taper is not going well! I have no experience with the fistulas and wouldn't know where to begin, but I can certainly pray for you guys that the Imuran helps - and SOON - so he gets some relief and avoids surgery.
Is the doctor that put him on the Imuran the new GI doc you are seeing? (new to you guys)
(((HUGS)))
First, Happy 16th Birthday to Lucas!!!!!!!! He will have to have a little late celebration when he is feeling better.
I am sooooo sorry to hear that Lucas taper is not going well! I have no experience with the fistulas and wouldn't know where to begin, but I can certainly pray for you guys that the Imuran helps - and SOON - so he gets some relief and avoids surgery.
Is the doctor that put him on the Imuran the new GI doc you are seeing? (new to you guys)
(((HUGS)))
Things are ok with Lucas right now. He's a little upset about ADDING to his daily pills but I have assured him it is only temporary and he will soon be tapering down...I hope. It's really hard to give him a concrete answer when its just day to day at this point. I sure hope things settle down soon. My husband however is flaring big right now. Its funny, he only flares when one of the kids is really sick (last time he flared my daughter had broken her femur and did 17 days in traction and 6 weeks in a body cast). I am anxious about Luc's labs but I have a copy sent to my office so I see it before the doc does usually.lol Lucas is feeling good though and bugging me to go for a run with him, and soccer season starts soon, so he is excited for that. He is not playing with his team this year(competitive), but he is playing house league to get him back into shape. That is what is bugging him the most, being out of shape. He is somewhat of an adrenaline junky. and getting back into that as well, lucky me!!! He worked on his bike all winter and is itching to hit the trails. How's Matt? Probably really sick and tired of that drain right about now. I'm sure I read it somewhere but did they set a surgery date?
Rachel
Rachel
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I don't blame Luc a bit! Whenever the pills change at our place, Claire gives me the meanest faces. You all would be impressed. We call it the "Claire stare". But as you said, only temporary.........
I hope you do backwards dates in Ontario too. I have to remind myself that 7/4 = 4/7. :ybatty:
Thinking of you all!
J.
I hope you do backwards dates in Ontario too. I have to remind myself that 7/4 = 4/7. :ybatty:
Thinking of you all!
J.
DustyKat
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That'd be right, you Yanks just have be different don't ya huh! :ylol:
That's right though Rachel, Matt's surgery is April 7.
Oh man and I hear you about the tablets and sport!!! I have been trying to introduce some supplements for Matt but suffice it to say if it isn't prescribed by the doc then I'm getting the death stare! Think I will hold off until after the op. :biggrin:
I'm dreading the start of soccer season 'cause Matt won't be able to play, first time in 10 years, :eek2:, well at least the first half of the season anyway. We talked about last week and he went out and bought a new soccer ball and shorts on Saturday but I reckon I'll just hide my head in the sand for a while now. :whistleinnocently:
It is so great to hear that Luc is feeling up to getting in shape and into his sport again, YAY!!! :thumleft:
So sorry to hear about hubby, I guess the stress is getting to him, as it is for all of you no doubt, and the Crohns takes the opportunity to sneak on in, bugger.
Happy pavement pounding! :shifty-t:
Dusty
That's right though Rachel, Matt's surgery is April 7.
Oh man and I hear you about the tablets and sport!!! I have been trying to introduce some supplements for Matt but suffice it to say if it isn't prescribed by the doc then I'm getting the death stare! Think I will hold off until after the op. :biggrin:
I'm dreading the start of soccer season 'cause Matt won't be able to play, first time in 10 years, :eek2:, well at least the first half of the season anyway. We talked about last week and he went out and bought a new soccer ball and shorts on Saturday but I reckon I'll just hide my head in the sand for a while now. :whistleinnocently:
It is so great to hear that Luc is feeling up to getting in shape and into his sport again, YAY!!! :thumleft:
So sorry to hear about hubby, I guess the stress is getting to him, as it is for all of you no doubt, and the Crohns takes the opportunity to sneak on in, bugger.
Happy pavement pounding! :shifty-t:
Dusty
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@Dusty ... I know how you feel about the sports :/ Gab has played tennis her entire life; then this nasty disease takes over and she didn't get to play her Senior year; she was the #1 player on her school team too ! BOO!
@Rachel...Glad to hear Lucas is wanting to participate in Soccer and keep in shape when he is feeling up to it !
It's amazing what these kids are capable of !
@Rachel...Glad to hear Lucas is wanting to participate in Soccer and keep in shape when he is feeling up to it !
It's amazing what these kids are capable of !
Tracey..that sucks for Gab. It's bad enough that they are dealing with this diagnosis but when it affects the things that build them up(sports) its just really ******! I am amazed everyday with Lucas. He was so sick in Dec. that it is hard to believe he is playing soccer and football and mountain biking now. I swear these kids are made of rubber...they bounce back so quickly. Glad you have joined us but sorry you are here!
Dusty..LOL I know the death stare!!! April is coming up fast, and then hopefully the surgery goes like clockwork and he doesn't miss that much of his soccer season. It's so hard to tell them no, isn't it? Thinking of you.
Dusty..LOL I know the death stare!!! April is coming up fast, and then hopefully the surgery goes like clockwork and he doesn't miss that much of his soccer season. It's so hard to tell them no, isn't it? Thinking of you.
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Got Luc's labs back, and they look really good. Just a cbc and diff but still it looks good.lol He is already asking to be weaned from the pred, still too early but he is feeling good and tried out for the school soccer team and actually did a full practise. I guess the new normal will be me feeling ill every time he gets hit or goes down. How does everyone else deal with the normal kid muck ups? I worried before but now its at a whole new level. I'm a nervous wreck, but it will get easier right?
Let 'em live Rachel!! EJ plays catcher some for his baseball team, and he has an enlarged spleen and is supposed to wear a spleen guard. The damn thing won't allow him to bend over so there's no way to play ball in it!! We just wrap some padding around him and let him go. I'd rather him take a few chances and have his childhood than keep him in a bubble!
!Honestly, it brings such joy to me to watch them play. And most definitely, LET THEM LIVE!!! I just worry...but I would never hold him back. He has a zest for life that could not be suppressed. We are frequent fliers at the clinic, and for the broken bones, of course, the hospital. He can talk his siblings into ANYTHING and it usually doesn't end well.lol Like the Mothers day explosion that ended with an ambulance ride for 2 of my boys and the "Worst Mothers Day Ever" crown from the local hospital for me. Trauma's I can handle, this long term is tough!
Hey Rad,
My son plays ice hockey! Everytime we talk to his GI she cringes - it's the funniest thing. It's not so funny when he gets slammed into the boards (I *wince* everytime!)... But his mates on the team know his condition and will jump on anyone that goes after him - his own personal body guards - laughs... AND he's gotten pretty good at taken a dive when he seems a truck coming his way...
My only concern now is it's time for him to 'move up' to the next level. In our Club there aren't enough kids to make a U-16 team so they have 14 (turning 15 in 2011) - 18 year (turning 18 in 2011) olds playing on the same team. I keep saying - "but they have facial hair!!" laughs...
The club is looking into seeing if they can make a special case to allow him to "play down" meaning in the younger group for one more year in hopes his body size catches up with his age!
Here's hoping!!
My son plays ice hockey! Everytime we talk to his GI she cringes - it's the funniest thing. It's not so funny when he gets slammed into the boards (I *wince* everytime!)... But his mates on the team know his condition and will jump on anyone that goes after him - his own personal body guards - laughs... AND he's gotten pretty good at taken a dive when he seems a truck coming his way...
My only concern now is it's time for him to 'move up' to the next level. In our Club there aren't enough kids to make a U-16 team so they have 14 (turning 15 in 2011) - 18 year (turning 18 in 2011) olds playing on the same team. I keep saying - "but they have facial hair!!" laughs...
The club is looking into seeing if they can make a special case to allow him to "play down" meaning in the younger group for one more year in hopes his body size catches up with his age!
Here's hoping!!
Update...got his latest labs, they look wonderful. His CRP is 1!!!! one, can you believe it?
I wanted to ask those of you with teenagers, what about dating? Luc really likes a girl, but when he is not feeling well, he makes 101 excuses to cancel plans. I have told him to invite her here when he is not feeling so great but still up to company, no way! Hubby says, he will tell her if she is important enough, but ... I know, I know, butt out. Just wondering if anyone else has gone through this? I guess I can't protect him forever, but I want to! Am I a crazy over-protective mom? If I am, please break it to me gently!lol
I wanted to ask those of you with teenagers, what about dating? Luc really likes a girl, but when he is not feeling well, he makes 101 excuses to cancel plans. I have told him to invite her here when he is not feeling so great but still up to company, no way! Hubby says, he will tell her if she is important enough, but ... I know, I know, butt out. Just wondering if anyone else has gone through this? I guess I can't protect him forever, but I want to! Am I a crazy over-protective mom? If I am, please break it to me gently!lol
DustyKat
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Oh wow Rachel, that is fab news!!! :mademyday:
Butt out Rachel!!! ahahahahaha, nah I hear ya! It was a fine line with Sarah when she brought boys home, too much interest from Mum or Dad really put the dampener on things! The only way it worked was to be like the phantom! She did prefer to go out though, away from the olds......:ylol:
Matt doesn't seem to be remotely interested in dating at this point in his life, I'm pretty sure the loves of his life are still maths and sport!
Sorry I can't be of more help to you hun.
From one over protective Mum to another. :hug:
Dusty xxx
Butt out Rachel!!! ahahahahaha, nah I hear ya! It was a fine line with Sarah when she brought boys home, too much interest from Mum or Dad really put the dampener on things! The only way it worked was to be like the phantom! She did prefer to go out though, away from the olds......:ylol:
Matt doesn't seem to be remotely interested in dating at this point in his life, I'm pretty sure the loves of his life are still maths and sport!
Sorry I can't be of more help to you hun.
From one over protective Mum to another. :hug:
Dusty xxx
LOL Dexky!! He is a handsome devil. But, I MAY be biased. I am officially backing off. I wasn't like this with my oldest... at least not out loud. Thanks for the kind words of encouragement and not telling me I am crazy (but Dusty came close LMAO). Good luck on thursday with Matt, my fingers are already crossed!
Hi everyone, sorry for the long absence but I have been pretty..discouraged? down? sad? you all know, lately. Lucas is ok, but still on pred,imuran,pentasa, etc. and we are back to the specialist tomorrow. He is having so much shin pain after soccer that he actually has tears, but continues to go everyday. He is also having new pain on his left side. My husband is so stressed about Lucas' suffering that he has now flared and has a 10 cm long fissure in his anus and also in alot of pain. Overwhelmed..that's the feeling! And tommorow is my birthday and I was hoping for good news but don't think that's going to be the case. I am just being wimpy, but sometimes, this rock feels like its crumbling into a million pieces. Has it really been less then 6 months of this? Thanks for listening, now back to the links page to catch up on how everyone else is doing!
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