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G'son is now in ICU after 1st Humira injections

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Posted 5/1/2009 1:59 PM (GMT 0)
Hi there. I just wanted to say that I hope your grandson recovers soon and I'll keep him in my thoughts!
Posted 5/1/2009 2:00 PM (GMT 0)
Thanks MMMNavy:

This is the information I have on "blood transfusions" (see below).

Unfortunately, I have needed many in my life time. My g'son's hemoglobin level was at 86 last night. His GI said the cam was not an option because of the intense swelling, inflammation, bleeding and ulceration.... she felt it would probably just get stuck. He can have "gravol" for nausea when he needs it. That is adding to his "drugged up" state.

And, yes, MMMNavy, they are missing something..... his overall health is steadily declining.... diahrrea has not let up, still bleeding & have not located the source, still in unbearable pain.... pain meds are not helping. He is TOTALLY drugged.... but to no avail. That is not good for anyone, let alone a 19 yr old.

I just don't understand why they are continuing to feed him, keeping the intestines working when, it seems to me, the smart thing to do would be to "give the bowels a rest"! And I don't understand why they are holding back on the blood transfusion - having been in a similar situation many times in my own life, "a pint of blood" can give your body that extra "boost" to turn your health around. Low blood count is dangerous and can destroy organs - heart, kidneys, etc. It's like the GI is concerned ONLY about she specialty area, the intestine, and not his overall health. Sure you can treat the consequence of diahrrea... dehydration.... but that is not fixing the underlying "problem"! My concern is that his overall health will not hold up while his GI debates weather the Humira will EVENTUALLY start kicking in to help his body cope. That could take months. His health won't hold up that long. Just how far will they let this go?

This is the pamphlet I was given last year before my surgery:

Blood Test Monitoring
Blood tests are taken regularly to monitor your blood cell counts.

Normal hemoglobin (Hbg) levels: Women 115-155 Men: 130-175
Normal platelet counts: 145-375
Normal white blood cell (WBC) levels: 4-11
Normal absolute neutrophil counts (ANC): 2-6

If your hemoglobin level falls below 80-90 you may be given a red blood cell transfusion.
If your platelet level is very low (usually below 20) platelets may be given by an intravenous infusion (IV).
If your ANC is below 1 you have a greater chance of getting an infection.
An ANC of 0.5 or less means even greater care will have to be taken to decrease your risk of infection.
If you ANC is very low, your cancer treatment may be postponed until a later date.
Posted 5/1/2009 2:16 PM (GMT 0)
When the body goes into flare, and when it is trying to fight a bacterial or viral infection, it tends to "hide" iron.'' So the low hemoglobin (assuming you mean 8.5?) could be due to the body's natural process of trying to heal itself from a flare or infection. 

This is perhaps why the doc might want to take a "wait and see" attitude on iron, because: a) the low HGB might resolve itself when the flare and/or infection is brought under control and b) introducing iron can feed bacteria, including bad bacteria, which is why the body "hides" the iron from the bacteria.   

This is also why it is recommended for patients NOT to take iron supplements when they have an illness or are in flare.

If you suspect any meds are causing a serum reaction, you can look for patterns: for instance, see whether fever rises or falls in answer to when a med is given. This is how I found out the Cipro given my daughter via IV in the hospital was causing her fever - I noticed a pattern, brought it to the attention of the doc, and it was withdrawn. The fever vanished. 

Posted 5/1/2009 3:58 PM (GMT 0)
Can you see the bleeding? If he's bleeding, that's probably the reason his hgb is low, not because the body is hiding iron. Hospitals use different scales, some use 85, some use 8.5. I can't take iron anyway, but I've never heard that it's specifically not recommended to take them when in a flare?

Mike
Posted 5/1/2009 4:37 PM (GMT 0)
Hi Nana,

Please remember that flagyl can make you emotional and anxious. This is a well-documented effect of this strong antibiotic. Other drugs can have side-effects too. But flagyl left me weepy and anxious. Unfortunately, these antibiotics can cause diahrea too. It is stupid thing for Crohnie to have more D, but remember the main goal is to reduce inflammation and infection. These particular antibiotics do both, and the D will get better once he is off of them.

Is the doctor a GI? I am a surprised they stopped him cold on the steriods.

I am praying that he starts improving very soon!!
Posted 5/1/2009 5:28 PM (GMT 0)
A colonoscopy may help figure out where his colon is most inflamed - that's the only way they could tell that it was the crohn's causing all that inflammation for my hubby. Also, a CT scan can show thickening of the bowel wall where there is inflammation. But even without finding out where the bleeding is happening, they should be able to treat it - and stepping rapidly off the steroids doesn't sound like treatment for such an acute flare up to me. Hydrocortisone as far as I know is the weakest of the steroids - compared to prednisone, solumedrol and methylpredisolone.

For my husband, stepping off the steroids was hard even after he was home and his colon was completely healed. I can't imagine him stepping off the steroids so rapidly in the middle of the flare up. He needs high doses of the strong steroids right now to stop this flare up, not reducing or stopping the steroids right now, in my opinion, but of course, I'm not a doctor, and there may well be valid reasons for withdrawing steroid therapy. Even though the steroids didn't seem to be doing anything for my husband, the GI weaned him off the steroids over the course of 9 months, not overnight. And even with that gradual a taper, my husband still felt it.

My husband's bowel rest for 10 days or so, was when he just drank chicken broth or beef broth. And the doc encouraged him to start drinking some ensure after that, because you need blood circulation in order for your colon to heal - that's why parts of the body with little blood circulation take the longest to heal, and the best way to get blood circulating through your colon, is to eat. So, that maybe why they want him to eat, but they should still be feeding him through IV. My husband got fluids and nutrition through IV both when he was on bowel rest, and when he started to drink ensure. They only took him off the IV once he started being able to drink about 6-8 ensures a day.

For pain management, at the hospital, they gave my husband dilaudid (through IV) - nothing else seemed to work for him. It's an opiate about 10 times stronger than morphine. They also gave him bentyl for the cramping. I gave my husband pedialyte to keep him hydrated - the other high sugar electrolyte drinks like gatorade gave him a lot of gas, the pedialyte seemed to sit better.

Some entertainment may be good as a distraction for your grandson. I bought my husband a portable dvd player, and several seaons of several TV shows to keep him distracted. My husband loves action and martial arts, but when he was in the hospital and his tummy hurting so much, he really didn't want to see any kicks or punches to the gut, so I had to buy him shows that didn't have that. I also took a laptop since the hospital had a guest wireless network that we could use - so he could get online. Also, when friends of his came to visit, they'd bring their laptops, and they could play a computer game together or something.

Please take care of yourself through all this - I know I was a complete mess when my husband was in the hospital, and I'm still recovering from not taking care of myself last year - I ate absolutely anything I felt like, mostly chocolates, twinkies, and fried chicken, and my cholesterol is too high, and I've put on 25 lbs, and my joints are complaining now, and I'm trying to fix all that. I wish I could come be with you, and give you a hug and just sit with you through all this.

To see noticeable (to me) improvement in my husband, it took 2 remicade infusions. After the first one though, my husband said he's feeling ever so slightly better, but his stool didn't improve, and neither did his hematocrit. I wouldn't give up home on humira just yet - perhaps the second dose will get him over the bump.

Did you ask the GI if your grandson can be helped by surgery? They need to do something to figure out the extent of his disease, so that they can figure that out.

(((Hugs)))
Posted 5/1/2009 7:15 PM (GMT 0)
Rider Fan: Thank you. For a while there I thot I had lost it!!! Our BC hospitals use hgl count as 85 not 8.5! I am a bit worn down from all this but I think my mind is still working! He is going about 15 times aday, Mike, & he leave a blood trail from the washroom to his hospital bed unless he keeps a "depend diaper" on. Yes, he has blood with every movement & his stool is black. His GI said the reason his hgl count was low is because he is bleeding internally. Thanks for caring Mike. It helps, alot!

Fall Colors: My g'son has been on Flaggy & Cipro before, without any bad effects. His doctor is a GI specialist but just bearly into practise, about 25 yrs old. She is over-confident, cocky-sure of herself, arrogant & full of self-importance. She knows I thinking she is too young to know how to deal with Crohns..... but, she is communicating with my daughter & I, even tho my g'son is considered an adult at 19. For that I am thankful.

In BC Canada we are short on doctors, especially GI specialists. So changing GI doc's is not an option - there are only 3 in our region, which covers a lot of northern BC.

Most patients aren't taken off steroids, cold turkey & I told her that. 4 days later, after conferring with another collegue of hers, she realized her mistake & put him back on steroids but only at 1/2 strength (was 100mg, is now 50mg.... I believe she has already tapered the 50mg by 1/3.... ????). We know that is playing havoc with my g'son's joints and muscles but she is stuck on her treatment.

PV: He has had CATscan, colonoscopy again this hosp. stay, MRI, & Ultrasound! Had stool & urine followups, blood work every day so far. The only thing she hasn't done is the camera pill. She did comment that she has done the "million dollar work up" which I took offense to immediately - to me, this has nothing to do with MONEY!

Not only did the GI doc take him off the steroids cold turkey, she also took him off the IV fluids! That night he ended up in ICU, badly dehydrated again! She immediately put him back on IV fluids only now he has the central line in his neck. And, yes, I do believe she made another mistake here by taking him off IV fluids! I thank God, she was smart enough to put him back on again!

Was your husband totally "drugged" on pain meds? That just kills me to see my g'son all doped up, not even able to carry on a conversation! I see that as treating the effects, not the problem! If you get to the root of the problem & fix it, then the pain should go away..... yes? Tell me if I'm wrong.

I'm researching everything I can get my hands on.... But, I don't have to be a doctor to see that my grandson is in worse health today than he was the day I brought him into the hospital! Whatever treatment she is doing.... it is not helping right now.... yes, perhaps the Humira WILL help in near future. The antibiotics may be working against some infection she has not found yet.

He has a TV, his cell phone, his laptop, books, magazines, puzzles, games, rubacube, the whole nine yards! He says he can't concentrate on anything very long. He says he's not getting depressed but I know him and I see the signs.... He tries to be so strong, you know, the macho 19 year old, invincible.... but he is not fooling grandma!

Again, I am just a frustrated, worried grandma, that's all! I left a message telling his GI doc to call me today. Being Fri. I want to talk to her before she takes leave for the weekend. I'll be seeing my g'son later this afternoon again.

pb4: if you read this thread..... I could use your input!

Hugs, everyone.
Posted 5/1/2009 8:24 PM (GMT 0)
Nana,

I too send my thoughts and best wishes for your grandson's speedy recovery. I was surprised to read that the doc d/c the steroids completely without a gradual reduction in dosage. It took her 4 days to realize her mistake? Do you see any improvement since the steroids were reintroduced?
Posted 5/1/2009 8:44 PM (GMT 0)
Hi CatMan: No... quite the opposite. Since she reinstated the 50 mg Hydrocortisone two days ago, my g'son has been feeling really sick... flu like symptoms, aching joints/muscles, nauseated, increase in Diahrrea, more blood, generally (in his words) "yuky".

So, is he feeling that way because she didn't put him back on "enough" steroids (say 90-100 instead of 50mg) or is his latest "feeling yuky" a side effect of the Humira? I'm pretty sure the antibiotics aren't the problem as he has had them before without any bad effects. But I'm also concerned that it may be because he needs blood. When I need blood, I am a very sick lady.

I do believe she is concerned about his bones being that he is just 19 yrs old. Perhaps that is why she is shying away from steroids?

PS:  The last thing my g'son needs right now, is for me to be "barred from a forum" due to my constant worrying!     

Posted 5/1/2009 9:03 PM (GMT 0)
Nana,

First let me say that you and your grandson are in my thoughts and prayers.

I have read through all of the posts and have to agree that stopping the steroids cold turkey was not the way to go. I had really good luck with solumedrol when I was in the hospital in the fall last year as a result of a major flare. I had initially gone into the hospital for a first dose of remicade and because I was dehydrated. I was having diarrhea about every 20 minutes all day long for about 10 days (7 of those in the hospital). My doc had done almost every test he could think of to figure out what was going on. He ended up doing a CT scan and finding an abcess in my abdomen where my colon had perforated. Needless to say I had my first resection and a week later had my second. I ended up in the hospital for 3.5 weeks and with a temporary colostomy. I was on a morphine and later demerol pain pump. I also had a central line in my jugular and received two or three blood transfusions. I was on TPN for nutrition during this time frame. I also woke from the second resection with a nasogastric tube down my throat to allow my intestines to rest and heal.

I hope that you grandson's GI will open her mind/willingness to ask for assistance (at least via the phone) of more experienced GI specialists around. My doctor had consulted with many different specialists when he was trying to figure out what was causing the diarrhea. I am very fortunate that my main doctor (internal medicine) has a son with this disease and has connections at the Mayo Clinic and elsewhere for consultations.

Again, I hope that your grandson begins to improve and with God's intervention overcome this flare.

Posted 5/1/2009 9:40 PM (GMT 0)

atctackett said...
I hope that you grandson's GI will open her mind/willingness to ask for assistance (at least via the phone) of more experienced GI specialists around.

Nana, I just wanted to ditto what Shawn said so very well in that last post. Also Shawn mentioned TPN. Has his GI put him on it? Seems like it might be a good idea.

Also, wanted to let you know I continue to pray for him!
Posted 5/1/2009 10:57 PM (GMT 0)
I am concerned about this doctor. I suggest you talk to the head doctor/administrator and ask for a consultation with several doctors at the hospital. Don't feel badly about doing this. It is your grandson's health! Difficult cases often have a team of doctors. She has made several basic mistakes and I would want to talk to the hospital administrator about it. I know this could cause you stress, but I still strongly suggest you do it. I had a nasty experience with a surgeon who was clueless and it nearly killed me. Take care!
Posted 5/2/2009 12:19 AM (GMT 0)
I have to agree taking someone off steriods abruptly speaks to not being the sharpest pencil in the box.
Posted 5/2/2009 2:45 AM (GMT 0)
Hi Nana. I think the flu like symptoms your grandson is experiencing maybe from the humira. When my husband got his first doses of remicade, he was still on 120 mgs of solumedrol, and he didn't experience any of the flu like symptoms. But now that he's off the steroids, when he gets a remicade infusion, for about 2 days thereafter, he has flu like symptoms, so the doctor in fact, gives him iv steroids before infusing the remicade. Also, when my husband was tapering off the steroids, about 3-5 days after he stepped down to the lower dose, he would have body aches and pains. In my opinion, your grandson should be on high doses of iv solumedrol, and getting his second dose or humira to combat this acute flare.

I was also very concerned about bone loss and osteoperosis, not to mention steroid induced diabetes when my husband was put on such high doses of steroids. But our GI assured us that for the short term, the steroids are ok - you just can't take them years at a time. In my opinion, your GI should be treating this aggressively with both high doses of IV solumedrol and humira. Also, since he has a picc line, he can get TPN along with his meds - he really should be getting that for nutrition, if he's not able to eat and absorb nutrients.

My husband had very acute cramping when he was in the hospital, even while on anti-spasm medications like bentyl. He didn't just have a constant ache, his insides would cramp, and he said on the pain scale of 1-10, it was about an 8, which on a protracted 24 hours a day long term basis, is very very hard to bear, and made him even more tired, and seemed to drain him of hope and fill him with despair. Pain on a constant basis can lead even the most determined person into depression. So we decided that it's bad enough that he's feeling this bad, there's no reason for him to endure through all the pain as well. So, anytime his pain got over 3-4 on his pain threshold, we paged the nurse for the dilaudid. Also, he couldn't sleep at night because of the cramping pain, and that's no way to recover - no sleep, lots of pain, pooping blood, getting poked with needles constantly, feverish, chills, etc. So, in the interest of giving him a decent day, and a somewhat restful night, and to keep his spirits strong, we got the nurse to give him the dilaudid the moment the pain got to 3-4.

As he started getting better, he started asking for lesser and lesser dilaudid. It wasn't addictive for him at all, because he only asked for it when he was in pain, and didn't abuse it. I strongly believe that the dilaudid helped my husband survive his hospital ordeal and not get depressed while he was in there. I think good pain management is a must to get someone through such a trying time, so even if your grandson is a bit dopey on pain meds, it is probably best for him.

I hope he gets to feeling better real soon.

(((Hugs)))
PV
Posted 5/2/2009 4:53 AM (GMT 0)
Just back from the hospital now, my grandson has had 2 units of blood, his BP & hgl count have already strarted to come up.

I had a consultation with the "assigned GP" & 2 of his nurses this aft, which resulted in a call to his GI to get orders for 2 units of blood. Which they promptly got started on. His GI has agreed to increase his steroids (no longer by IV, now by mouth) to 50mg Prednisone. I'm really glad to hear that because he did so well getting rid of the inflammation on 40mg Prednisone back in Dec/08 when 1st diagnoses.
The MRI showed no absesses; that's a plus, although it did show extensive inflammation, ulceration and blood weeping still of his entire colon; also showed fissure cracks in his rectum/anus area.

The GI has also started 2 Tylenol (every 4 hrs) to be given 2 hrs after the 50mg Demerol pain meds (given every 4 hrs also). This seems to be holding his pain much better. After just 1 unit of blood this aft, I could see an improvement in his overall health, almost immediately!

PV: I do think you are right... the flu like symptoms are probably a combination of the Humira & being taken off the steroids. Now that he's back on a suitable amt of steroid I think we may see some improvement. I'm sure hoping so. I have been assured that his "assigned GP" will drop in on him several times over the weekend to keep an eye on him. That's good to know. You know, PV, your description of what you husband went through sound exactly like you are describing my grandson's experience! It's uncanny! It's helped me very much.

Atctackett: Thanks Shawn.... for sharing your experience. I'm so sorry that you ended up having surgery. Sure hope things are better for you now. Did the blood transfusions make you feel any better?

I talked to my grandson about nutrition; he wants to just stick to semi liquids & not go the route of TPN so that's okay.

Thankyou, ALL OF YOU! By telling me your experiences with CD, I have learned sooooo much more than I could EVER learn from books! I am an "eager to learn pupil" - you all are my teachers. Thank you!

I've got my fingers crossed that tonight will be a turning point for my grandson. Thank you for your good wishes & prayer.
Posted 5/2/2009 5:41 AM (GMT 0)
It sounds like you managed to get some traction with his doctors. You sound more more hopeful, and I hope that bears out when you go see your grandson in the morning. I hope you'll get a good night's rest tonight. Let us know how he's doing tomorrow. I hope the measures they've taken tonight help your grandson turn the corner. When steroids have worked in the past for my husband, he said that he normally feels a pretty big difference within 48 hours - so you'll probably see some improvement soon.

Sending positive vibes your way,
PV
Posted 5/2/2009 6:26 AM (GMT 0)
Hi Nana sorry i didn't get back to you sooner but i was at the hospital since 9:00am and didn't get home till 6:00pm that is what time i got out of the recovery room i got my port a cafe put in my cheat today and the OR was over booked so i missed my 9:00am appointment and didn't get in till 2:30pm long day its still hurts pretty bad i can't sleep,but enough about me it looks like things are improving a little bite for your grandson he is likely getting sad cause its been a long time since he has been well and thinks that things are never going to change we were all there before ask the DOC'S if they could give him mild nerve pill that might help as for the blood i don't know what there waiting for he will feel so much better after he gets it i'm not saying it works miracles but it gives you well deserved energy and just makes you look better blood always perked me up? Please keep us posted keep your head up nana you are his world but don't you go getting run down yourself you get some rest and eat well i'm worried about you. )))))))))HUGS((((((((( Jenn smilewinkgrin
Posted 5/2/2009 3:51 PM (GMT 0)
Nana,

I would hav to say that I felt better after I got my transfusions. My blood loss was pretty quick and from the surgeries, so I didn't experience a lot of the symptoms. I am glad to hear that your grandson is starting to show signs of improvement and his GI is making better adjustments/decisions for him. I hope that he is doing better today!

Posted 5/2/2009 6:43 PM (GMT 0)
I just spoke with my g'son on the phone. He says his CD symptoms are still the same (frequent watery, bloody diahrrea, pain, etc) but he "feels a little better" overall.... not as fatigued, says that "yuky" felling is gone. Is now on prednisone 50mg by mouth but still has the IV fluids. The achey joints/muscles are still there but not as bad. He has cut out the 2 tylenol... says he doesn't need them. He says it's all your positive thoughts, hugs, wishes & prayers that are building him back up.... says "heaps of thanks, guys!" He's got a ways to go but this sure looks promising!

Jenn: So sorry to hear you had such a very long day! It must have seemed even longer considering you are not feeling well at all. Rest up, hope you get well soon. Hugs.

Thanks eveybody!
Posted 5/2/2009 7:05 PM (GMT 0)
Hi nana glad to here that your grandson finally got his blood products and seems to be feeling a little better and even stopping the tylenol is a good sign best of luck to you nana.Jenn

Posted 5/3/2009 1:54 AM (GMT 0)
Good evening nana how is your grandson this evening?Does he look a little better since he got the blood everyone was right about getting another doctor to take over his care everyone on this forum knows you can not stop taking steroids its dangerous what was she thinking or was she thinking at all you can request another doctor a second opinion it can't hurt and 2 sets of eyes are better than one nana idea i got a big mouth when it comes to my family if i feel they are not being treated the way they should be i always take it higher you have to in this world we shouldn't have to but unfortunately some of our doctor's are there only for a pay check and that is just sad i wish i could magically appear there with you and your grandson and HUG you both wrap my arms around you and tell you things will get better but your likely tired of hearing that but it is true there is always a turn around and his time is coming? God Bless You All Jenn smilewinkgrin smilewinkgrin smilewinkgrin
Posted 5/4/2009 2:32 AM (GMT 0)
Hi Nana. I hope things are going better for your grandson, and that you're doing well too. Just wanted to drop a line to tell you that I'm thinking of you.

Take care.
PV
Posted 5/4/2009 3:20 AM (GMT 0)
Me too, hope you're both holding up ok.
Posted 5/4/2009 6:58 AM (GMT 0)
Hi everyone: I was in to visit my g'son again this aft. He is doing better, hgl count is 108, pain & diahrrea still the same but the "yuky feeling" & flu-like symptoms have gone..... Probably because of the prednisone! The latest development is he looks like he has "elephantitis"..... he is retaining the IV fluids... so they added a "diuretic" to his numerous meds.

Also changed the Demerol to hydromorphone which seems to be dealing with most of the pain. He's getting his appetite back (prednisone!!!). His doc asked me to bring him more "homemade chicken soup" so I did, along with a dozen fresh baked buns. His GI wants to release him mid week (about Wed) then have him come back in Fri for his Humira shot... My g'son is going to ask her if he could take the shots a week tomorrow, on the following Mon. because his GI will be away Fri aft till Tues. morn.... if he did have another reaction like the ICU bout, she would not be available to deal with it. If the shot was on Mon. she would be there Tue to Fri pm if any reaction happened. I hope she will agree to this.

I would prefer to have him stay in the hospital until 3 days after the next Humira shot just in case it WAS the Humira that landed him in ICU.... But, his GI has a mind of her own, that's for sure. One day at a time.... tonight his concentration is back & he is far less "doped" up. I am so happy about that. Don't ever want to see him in that state again. That was aweful...

I wish his diahrrea would slow down or at the least, the bleeding to stop. I'm concerned that if we bring him home from the hospital & he is still bleeding internally, he may end up back in the hospital needing more blood transfusions. I hope the prednisone gets rid of the inflammation & swelling real quick.

Today, he is definitely improving. One day at a time.... Keep your fingers crossed!

Thank you for all the good wishes & prayers. As you can see... they are definitely helping!
Posted 5/4/2009 2:00 PM (GMT 0)
Nana,

Glad to hear that your grandson is doing better. That said, it sounds like he still has a way to go before he is really feeling better. I would request that the doc keep him in the hospital until he gets his Humira. I mean, what's the point...release him Wed. only to have him back 2 days later? That doesn't make any sense. Also given all that he's been through, I would think they'd want to be extra cautious. Your point about staying in the hospital a few extra days after the Humira makes sense to me. I hope things continue to improve for your grandson.
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