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Thinking we want to try LDN

Okay, I have read and researched to the point of just about getting a brain bleed and I think I really want to give LDN a go. We meet with S's doctor on Tuesday. His original suggestion was to start him on AZA. Actually he's already called it in to the pharmacy and I just haven't gone to pick it up. After much research it just doesn't sit well with me or my husband.

Right now my son's quality of life is great. If you ask him on a scale of 1 to 10 he says he's at a 9 1/2. He has stomach pain a couple of times a day that last about 30 seconds and a couple of "itchy" feelings on his right side during the day. None of this prevents him from going to school or playing sports, etc. Having said this, I'm aware that more could be going on on the inside of him that doesn't necessarily reflect on the outside. He has the perianal abscess that we keep an eye on. He's currently on Entocort (2 weeks) and Flagyl (3 weeks).

I have no idea how his doctor will react to us wanting to try LDN and some diet modifications before we try some of the more hardcore meds. I plan on printing out the suggested materials for supporting documentation. Of course, we also find out the results of the small bowel follow through so this whole plan could go to hell in a hand basket in no time I guess. We just feel like we should give this more low-risk approach a shot before jumping into Aza.

I need a reality check here. Am I being irresponsible in this approach??

Shelley
Mom to S - 10 year old boy diagnosed with Crohn's 2/2012
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I need a reality check here. Am I being irresponsible in this approach??

Shelley
Mom to S - 10 year old boy diagnosed with Crohn's 2/2012
Personally, I don't think so Mom!! If I knew then what I know now…or think I do!! My son has had over 2 yrs. of remission on first 6mp and now Humira so I wouldn't change unless we had to. Still, if I had found this site first…things may be different. I really believe I'd be more inclined to try the bottom-up approach as well.

Go with your gut Mom and good luck!! There are no black and white answers!!
 
Yep, what Dexky said...had I known about naltrexone prior to this site (to which I first posted the DAY before V's first Humira shot out of sheer panic) Id've gone that route first.
You know I'm gonna say this, but I'd do naltrexone and EN together :rosette1:

Didn't you get the SBFT result in real time? The radiologist told Violet (I wasn't in the room) it showed inflammation in just the TI while she was in fluoroscopy, and showed her the place...she thought that was cool. Then he came out and told me. I hate waiting for anything. :arghmatey_ani: (couldn't find my favorite stabbing smiley and liked this one)
 

DustyKat

Super Moderator
It is never irresponsible to research and question Mum. :)

You have covered all bases and obviously understand that you need to be flexible and honest with the outcomes of any treatment decision that is made. Once the results have been received and discussed and if you feel that you have time on your side then by all means go with presenting the idea of LDN to the GI. If the GI is not on board with the idea then perhaps try a compromise...

We will go with what you suggest if we can try this first for 3 months, for example. We will keep a journal of his symptoms etc and will have tests done at x intervals to map his progress. At any time we feel he is worsening we will be objective and make contact with you. Lastly we do understand the risks associated with going down this treatment path. That sort of thing, might be worth a try as a way to talk him round if needed!

Good luck!

Dusty. xxx
 
I asked my doctor about trying LDN and he said he didn't see any harm in it, but in his opinion it doesn't work. I figure it can't hurt, and if it helps a tiny bit she will be better off.
I think you are doing the right thing in researching, and you always should ask questions, and don't let yourself be talked into things. Trust your gut!
 
The radiologist at the SBFT said the inflamation was at the ileum and there was some narrowing and signs of ulceration. We didn't ask how narrow or how much inflamation, etc. My thought was she can't give me any advice on what to do about any of it so what's the point of getting into detail with her.

Oh, my B&W friend, you have no idea how impatient I am. My husband could give you an earfull on that!! I'm going to have to dig deep for patience in dealing with this disease. When something breaks or there is a problem, I like to fix it and get on with my life. That approach is not going to work with this crohn's business unfortunately!!

BTW, I'll be asking the doc about EN as well. I got an email from Amazon that they have shipped my Beat Crohn's book :)
 
We will go with what you suggest if we can try this first for 3 months, for example. We will keep a journal of his symptoms etc and will have tests done at x intervals to map his progress. At any time we feel he is worsening we will be objective and make contact with you. Lastly we do understand the risks associated with going down this treatment path. That sort of thing, might be worth a try as a way to talk him round if needed!
Dusty, YOU ROCK!! I love that approach with the doctor. Very respectful!
 
I asked my doctor about trying LDN and he said he didn't see any harm in it, but in his opinion it doesn't work. I figure it can't hurt, and if it helps a tiny bit she will be better off.
I think you are doing the right thing in researching, and you always should ask questions, and don't let yourself be talked into things. Trust your gut!
Is your daughter on LDN? How long and how is she doing?
 
So tonight he poops and there's some blood attached to a piece of the stool. It's not a lot but it's blood. This has never been an issue for us so I'm a little freaked out. He says his stomach has been "super itchy" today. What does itchy mean??? I've never fully understood that. He says it's not a pain just an annoying itch. He doesn't feel bad or have a fever. Has been out playing basketball and jumping on the neighbor's trampoline most of the day. This morning when I did my morning butt check on him I did push on the perianal abscess spot because it had a little head on it like a pimple. When I pushed harder he yelled and said I was pushing too hard. Could this have caused some bleeding? He's been on Entocort for a little over 2 weeks now and it makes me wonder if it's working. EN is sounding better and better just to give everything a rest in there!
 
Shelley, not to "scare" but V had NO NARROWING nor ulcers and her doc still calls the TI inflammation "significant" so if your dear fella has narrowing I wouldn't mess around. Narrowing and stricture are V's doc's biggest fears and they can be happening in outwardly well kids.
He pressed this on us when we were still resisting drugs, and gave the example of two teens he'd very recently consulted on, both outwardly "well", both presenting in ER "too late for me to treat or prevent their strictures" and both needing emergency sx. One was a 16 y/o girl, a cheerleader who was living her normal life and no weight loss nor gut symptoms prior.

My point being, stricturing can be a silent affair, as Dusty can certainly attest.
I don't know how effective naltrexone is on stenotic bowel...? Nor if the doc will be willing to use it with an already narrowed and ulcerated bowel.

Much love, this is life in suckville for sure :stinks:
 
EN is ALL pros, no cons. Literally. It is harmless and can only improve things, whether used with drugs or alone as Stephen is and Violet did for 3.5 years.

Your boy is prob well nourished if he's jumping on trampolines etc and he sounds in good shape energy wise, but the anti-inflammatory properties may be worth it?
I'd be less prone to use naltrexone with confirmed narrowing; I'd go with the Entocort which is supposed to release mainly in the ileum and maybe add naltrexone, but not d/c Entocort until and unless the stenosis is resolved, just my opinion.
I'll be curious to hear the doc's stance on naltrexone in your fella's case.

On another note, thanks for the "butt check" complete w/abscess report! Only here will it be appreciated...:ylol:

Julie (fellow Suckville resident) Is Dusty the mayor?
 

Kev

Senior Member
Hi Mom2oneboy...

I'm Kev, father to 2 boys (well, grown men now). My top reason for trying LDN was that I was totally willing to be a guinea pig (or lab rat if you will) if it proved that LDN was SAFE and effective enough in case my sons should develop this disease. I won't lie, I was hoping it would get me out of the deep... hole I was in, but more importantly.. and this was the risk I was willing to take, would it/could it be of any use to my sons.
If I had to live with this disease for the rest of my life, I could handle that. But if my boys got it... especically if they got it as a result of a faulty gene of mine... well, that was something I didn't think I could handle. Anyway, long story short, it did work for me AND it has kept on working. When I started on it, I was in very bad shape, and ALL of my remaining colon was severely involved. I posted some photos (VERY GRAPHIC) of the scar tissue I am left with. The good news is that, those nasty parts aside, all the rest of my colon is now pink/healthy. I can understand why some doctors think or feel that Naltrexone won't work. It is a neurological drug, has no direct effect on the colon. It's akin to patting your head to make a sore toe better. But, it does work. Safely. I started on it in November (28th I believe) of 2007. Here we are, March 19th, 2012, and it is still working... I've taken it every nite, and aside from some nice dreams, I haven't a single side effect to lose sleep over. So, LDN cleaned up 4' of totally involved colon, it has seen me thru EVERYTHING life can throw at a person, and got me back to a good way of life. Imagine your 10 year old son living a normal life from now on thanks to LDN.
That is what it offers. I wouldn't (personally) think that 10, 20, 30, 40 years etc of those 'other' drugs CAN offer that. The sooner one takes those other drugs, and the longer one stays on them, well... the odds, the numbers, the percentages... look bad.
 
Julie,

My thought process here is to do the EN to get him into remission. Seeing the blood in his stool scared the dookie out of me and makes me think the Entocort is not working. I don't want to switch him to pred! Once we hopefully obtain remission and get everything settled down in there then do a recheck on the narrowing/stricture situation. Is it inflamation or is it scarring? Does that make sense or am off my rocker. I now know just enough to be dangerous LOL.

Have I mentioned that I have to wear my pink reading glasses when I do the butt check. A sight for sore eyes I tell ya!
 

Tesscorm

Moderator
Staff member
Kev,

Just out of curiosity, because you've been well for quite a while now, how often are you 'tested' for Crohns, i.e. bloods, colonoscopy, etc.
 
Kev,

I've read some of your other posts and have to tell you that you inspire me and give me hope. Are you available to join me at the doctor's appt. tomorrow at 8:40?? LOL I really want to try the LDN and I would like to do it with the support of his doctor. However, I'm not opposed to switching doctors in order to find one that would support and provide care with him on LDN. Would you suggest starting him on ldn now even though he's not in remission and on 9mg of Entocort?

I need to go back and find the threads with your story. Sounds like you have had quite the journey and it's so wonderful of you to share that with us newbies as we enter these unchartered waters.

I encourage and appreciate all your feedback,
Shelley
 

Kev

Senior Member
Right now, I have a scope and complete labs every 6 months. I was down to once per year, but that changed when the cancer cells showed up. Just a reminder folks, but I have to be especially on guard against cancer thanks to my AZA/Imuran experience. They found pre-cancerous cells (early stage melanoma) AND a small pre-cancerous tumour in my colon. The melanoma goes back almost 2 years, the colon scare about 1 1/2 years ago. I see one specialist every year for the melanoma potential (so far so good on that count) and my GI every 6 months with regard to the colon. When I first started on LDN, I was seeing my GI every 3 months or so... that gradually stretched to every 6 months with annual scopes. But, like I said, when the potential of cancer came into the equation, my scopes and bloodwork ramped back up. I was warned at the time I had the AZA mis-hap that there was a risk of cancer; so we have all kept an eye open for it. Again, my GP & GI have seen to it that I've been seen by the very best we have.
 

DustyKat

Super Moderator
Not wishing to butt in but I understand what you are saying and that makes perfect sense. What J is saying makes perfect sense too. Do you know how narrowed the TI was in the first place? Did he have symptoms of narrowing?

When people say that EN is as effective as steroids in inducing remission that is true but some areas of the bowel have greater success than others, the terminal ileum being one of them and I think all areas benefit from the bowel rest it provides. Since EN is a first line treatment, particularly in children, in most countries outside the US then I personally don't see it as being an issue and certainly not a dangerous one.

Your idea is sound and sensible. In my book anything is worth a try, if it works then well and good, if it doesn't then you chalk it up to experience and move on. :)

Dusty. xxx
 

Kev

Senior Member
Well, if you swing by my place before I leave for work at 5:30 AM, I'll be happy to tag along. Mind you, the 1100 homes whose garbage I'm supposed to pickup tomorrow might be a little PO'ed.

OK, kidding aside (ah shucks).. Entocort... isn't that a form of cortical steroid? Assuming it is, AND it doesn't impede/impair LDN (and popular opinion is that it doesn't.. correct?) I'd think a one-two punch combo of LDN and Entocort should work wonders.

In my past, while on steroids (pred) I felt fantastic. Problem is, one can't stay on them. Weaning off them, going back on them, that whole roller-coaster is the downside of it. Of course, if Entocort isn't a steroid, then these last few sentences are total gibberish.
 
Dusty,

The radiologist just said she saw signs of narrowing but didn't say how much. I'll find that out tomorrow at the doctor appt. What are the symptoms of narrowing?

I just read that thread about your son and what all he (and you) have been through. Wow! I also saw the picture you posted of him and he is a real cutie patootie! I sure hope both of your babies continue to do well. You deserve a break!

Did you see where Julie made you Mayor of Suckville? I guess congratulations are in order! ;-)

Shelley

Shelley
 

DustyKat

Super Moderator
Entocort is a steroid. It is glucocorticoid so has less calcium bone robbing and other side effects that Pred does as it tends to act directly on the bowel rather than systemically.

Dusty. :)
 
Hey Kev. Entocort is indeed a steroid. It it "enterically" coated so it doesn't release until it reaches the small bowel.

I'm absolutely fascinated by the naltrexone angle and def will try it w/Violet if we d/c Humira after the 3mo trial ends in May.
Would I do so if she had narrowing...hm. Her doc scared me about stricture, so I dunno...like I said, prob do Entocort or pred at first and then wean the 'roid and add the naltrexone, assuming the stenotic area had opened up.

The reason I adore EN is it has ZERO adverse effect. Even if it doesn't do crap for the inflammation, you get the guaranteed nutrition in an absorbable form. For a growing, pubertal kid, that is something I won't give up.

Shelley, maybe the blood is from the fistula and is localized?

Mayor Dusty, please if you're going to BUTT in, provide a Butt Check to go along with it :poo: (will someone please add a poo smiley)
I'm collecting poo every two weeks these days so Poo Patrol shall have to suffice in my case.
 

DustyKat

Super Moderator
Awwww, thanks for your kind words hun. :hug:

Narrowing usually involves symptoms like bloating, cramping, inability to tolerate fibrous foods and perhaps constipation. Certainly as it progresses the pain escalates.

Mayor!!! I will only be mayor if I get to wear one of those chain thinga ma jig's...


Dusty. xxx
 

Kev

Senior Member
WOW, I'm amazed that En isn't more widely used. Or that none of my doctors suggested it. Would have spared me from having to be the only male (in johnny shirt no less) who had to go have a bone density test in the midst of a swarm of elderly (OK, my age) women also in johnny shirts waiting for their bone density tests. They sure got a giggle out of it.

Are we sure about the lack of adverse effects? If that is the case, word of Entocort needs to be spread. I understand how the enteric coating gets it to the small bowel, and I understand how that circumvents it going directly into the bloodstream, but once in the GI tract, it must be absorbed to some extent or the other into the body overall.
(again, just ASSumption). Thinking about it, I went thru those hi dose steroidal enemas without going thru withdrawal when I came off them. Pred withdrawal was altogether a totally different story. But are steroids just a stop gap, or a viable long term treatment?
That's a legit question, I'm not familiar with En (obviously) but I sort of considered pred just a short term fix, not a long term option. At least given the pred shortcomings, OK?

One final word. A word of caution in case it hasn't been put out there. Anyone who has a treatment that is working (whatever combo that might be)... if it is working, for pity sake don't rock the boat. Don't ditch what you have and take a gamble on LDN or any other 'treatment' until/unless something/someone gives you a legitimate reason to make a change. Remission, stability, control, whatever you want to call it.. is too 'prescious' to take chances with. Some treatments, if you toss them aside on a whim, don't give a 2nd chance.
 

DustyKat

Super Moderator
Entocort certainly does have side effects and it will be systemic to degree. It's just that it tends to have less side effects on the whole than Pred does. Of course everyone's experience is different. It is also a short term med but can be used over longer periods of time compared to Pred.

One final word. A word of caution in case it hasn't been put out there. Anyone who has a treatment that is working (whatever combo that might be)... if it is working, for pity sake don't rock the boat. Don't ditch what you have and take a gamble on LDN or any other 'treatment' until/unless something/someone gives you a legitimate reason to make a change. Remission, stability, control, whatever you want to call it.. is too 'prescious' to take chances with. Some treatments, if you toss them aside on a whim, don't give a 2nd chance.
That is a very good point Kev. We all need to make these decision with honest and open eyes and be flexible to make changes when needed. I hope more than anything that LDN continues to work wonderfully well for you Kev as I do for all those parent's here that have children taking it now and those that wish to have their children take it in the future. We have other parent's here that have tried LDN for their children, dannysmom, cowgirlnz, DMS and perhaps others that escape my mind right now?, but unfortunately the drug failed for them. It is just testament to how individual this disease, one size does not fit all.

Dusty. xxx
 

Tesscorm

Moderator
Staff member
Kev,

I think you're confusing EN with Entocort. EN is Enteral Nutrition, liquid diet not Entocort. EN, Enteral nutrition, has no side effects but can often induce remission. :)
 

Kev

Senior Member
Hey, thanks for the info. Who says you can't teach an old dog new tricks? Now, teaching an old dog new card tricks, that is a totally different proposition. Takes a lot of Scooby snacks.

Anyway, I'm glad that my EN = Entocort confusion got cleared up. How many posts did I waste on that brain fart?

On another point... yes, sadly, LDN is not 100 percent effective. I've heard numbers that ranged from 69% to 81% (I believe, it has been awhile). Mind you, those stats are comparable to most (if not all) the other meds on the table. The downside is that, out of 100 cases (regardless of how similar/disimilar) 20 to 30% +/- aren't going to hit the LDN jackpot. Which just re-affirms how important it is to not changes horses midstream. I've heard stories (again anecdotal) that Remicade may not give a 2nd chance if you come off it to try something else. I don't know if this applies to Humira or Cimzia, but... if one IS thinking of trying LDN, you need to FULLY investigate whether or not you have an avenue back.. an escape route if you will.. if your case ends up being 1 in the 20-30 percent for whom LDN is not the answer.
 
I am wondering if the Remi/LDN combo wouldn't be a good try before Remi/Imuran combo. I almost would prefer a scope and colectomy before Remi/Imuran. The cancers scare me to death. I know it is a fraction but I am a total worrier. Am I being to scared... Does anyone have a kid with Remi/Imuran combo for UC. I seriously am feeling like my brain might explode from thinking about all this too much.

I too wish if I knew about LDN while Rowan bleed for a month before her colonoscopy back when her disease was mild. Damn you hindsight. BOOOO! Not that I had a clue, I thought she had a hemmoriod or a parasite.
 
I just read about all you have been through with Rowan (love that name). I cried reading it and my heart just broke for both of you. She must be one special little girl and you are the best mother ever. I really can't fathom how you have done all of this while having a 2 year old on top of it. I am about ready to find a corner, curl up in the fetal position and rock and I haven't been through a smidge of what you've gone through! You are one special lady! Keep fighting the fight!

Blessings,
Shelley

I am wondering if the Remi/LDN combo wouldn't be a good try before Remi/Imuran combo. I almost would prefer a scope and colectomy before Remi/Imuran. The cancers scare me to death. I know it is a fraction but I am a total worrier. Am I being to scared... Does anyone have a kid with Remi/Imuran combo for UC. I seriously am feeling like my brain might explode from thinking about all this too much.

I too wish if I knew about LDN while Rowan bleed for a month before her colonoscopy back when her disease was mild. Damn you hindsight. BOOOO! Not that I had a clue, I thought she had a hemmoriod or a parasite.
 
I am seriously thinking I need a house call for someone to look at the prolapse. There was a lot of blood this morning. :(.

Shelley, it is hard and I am soo very far from perfect. Rowan is very mean to her baby sister. I am at the end of my rope. Rowan avoids her sister. When Livana (my 2 Yr old) tells Rowan she loves her, Rowan just turns her nose up and gives a mean look. It makes me mad that she is so mean to her sister. She is angry that her sister is not sick too. Lots of time outs going on around here.
 
I realized week before last that Alex's skin tags were full prolapse, had the GI look at his visit last week and it was essentially, do nothing. She thought maybe zinc oxide to help heal any fissures - he often has some bleeding too. I haven't bothered. It doesn't hurt him, so I guess no surgery until it's a problem. Not really clear when that is. sigh.

Aw, poor Rowan, sibling love/hate! Totally understandable for her to feel that way, she has a lot to deal with at such a young age. Hopefully it'll get easier as they grow!
 
There is a lot of blood from rowans prolapse. It looks like a menstrual period. It has gotten worse daily in that way but is better in others... No visible ulcers... Goes back in sometimes by itself where it wouldn't before. Seriously I just want to take out the colon and rectum and be done with it.

Today I saw fragments of red powdery substance in her urine. Geez just what we needed another symptom. Called the GI. If she is not bothered don't worry. Ohhh ok I'll not worry all weekend because I can just shut that off. Right... Ok. :ybatty:
 

Kev

Senior Member
What's the color of the iron pills you have her on? Shooting from the hip here, but that was my 1st thought. I still take 5-ASA (Salofalk). Thing of it is, my urine is the color of those pills... why they put dyes/colors in our pills escapes me. If your research doesn't turn up anything connected to her meds causing a change in urine, it might help you cope with the worry until you hear from her doctor.

On the bleeding issue, keep an eye on it, but bear in mind that blood loss is common in ulcerative colitis. My disease had the worst aspects of UC and CC combined, and at my worst I lost about 1 litre (OK, folks, you'll have to do the conversion) every 2 - 3 days, for almost 3 months straight. Mind you, there's a big difference between how much blood a full grown, 6' 3", 245 lb MAN can stand to lose Vs a child. How is her color? I don't know of any simple tricks to help gauge when sustained blood loss is a 'right now' issue. I think there is a simple tell, but I can't for the life of me put my finger on it.
 
Mary, the particles in her urine could be stones, they can be as small as a grain of sand...stones are a recognized EIM of Crohn's, don't know about UC.
I suspect they are from malabsorption.
God, I wish you could get a break...:kiss:
 
Her iron is green. God I hope it is not stones. My mom had reoccuring kidney stones. Yearly has to have lyptripsy done and has to pass them. Will be collecting her next sample.
 

Kev

Senior Member
If they are stones, and related, it would indicate further discussion with your doctors. The stones might be a clue/diagnostic sign that this is Crohns, and not UC. Or both. Like me.
 
Oh god I hope not. I really am hoping for UC and UC alone. I seriously cannot remove the colon and still have her in such pain. I can't wait for a remission. I need a drink. I need to get drunk. I never drink but I think I am due for a night to forget. Even if just for a night. She just peed nothing out of the ordinary. Hmmm hoping it was from her butt.
 
I sounds like you need to run away for a bit... I am sorry you are deaing with all this and Rowan as well. My Caroline is 10 now, and was diagnosed with UC at 6. She had a complete colectomy at 6 and "that" pain went away.. I call my doctor all the time.... and he is fine with that. He considers Caroline one of his family... that is the kind of doctor you need... this disease causes such continuous nervous tension for us as parents... you have to have an outlet...and someone to ask when you are scared...
 

Kev

Senior Member
It's very hard for us parents to step out of the picture, take some me time, but you HAVE to. You aren't just a parent, you are a PRIMARY care giver. If something happens to you, who will fill the gap? Think about that. It goes against every parenting instinct, but it also happens to be the plain, old fashioned truth that, if you wear yourself completely out, who will be there to step in.
 
I am going to a really supportive friends house. Going to try to not think about this while I am there. My main issue is I can't turn my brain off. I probably need to be knocked out. Maybe I need to take boxing lessons so i can punch something that will punch me back. It is like I only feel this one feeling all the time. Helplessness.
 

Kev

Senior Member
There was a time (which I HATE to think back on) when my life was total, un-ending misery. I'd ended up in the hospital, for a while it looked like I had pancreatic cancer, but (fortunately) it turned out to be pancreatitis (due to Crohns, but they didn't figure that out at the time). The pancreatitis caused major pancreatic cysts, and the pain from them was ... unbearable, unimaginable,un-ending. I literally spent my time counting down the seconds till I could take another dose of pain killers. Problem is they'd wear off somewhere between 1/2 to 1/3 of the way till my next dose was due. That interval was the worst... and the more I tried to ignore the pain, the worse it felt. I found this site, and thanks to having a laptop AND wireless, I'd spend that time online here. It didn't lessen the pain, but it broke my 'focus' on it, and helped pass the time. I don't know if I would have made it thru those months without something, ANYTHING, to take my mind off it. Regardless of whether it is physical pain, or the REAL discomfort of watching/thinking about someone you love being in pain, having this disease... you need some form of diversion. Relief. Even a momentary break from all of it.
 
Mary...thinking of you guys...worried. :heart:

Kev, your posts are so caring, and having been through hell yourself you can relate. I can relate as a parent, I'd rather be the patient than mother of the patient. :heart:
 

Kev

Senior Member
Well, we 'males' are big babies when it comes to illness or pain. If men had to go through labour, the human race would have been extinct before it ever crawled out of the ocean. But I recall, vividly, the birth of my oldest son. A picture perfect pregnancy that ended with labour pains 11 AM on a Sunday morning. You may have seen movies or TV shows of a bygone era where the Dad stayed in the waiting room till it was all over and done with. They changed those rules, but I don't think they really contemplated it before doing so. I was in the delivery room... 36 hours of hard labour. The only physical pain I encountered was the death grip on the hand I offered for support. But watching my wife in labour, I wasn't prepared for that. At one point, one of the doctors who, probably inured to the sight/sounds of a woman in labour by years of exposure, turned a wastebasket upside down to sit on. Something about that casual move made feelings I was trying to suppress well up. I wanted to leap across the room, grab that doctor, and shake him like a rag doll because he wasn't doing anything to stop the pain. The only thing that kept me in check was that deathgrip on my hand. I wasn't in my right mind. I 'knew' that they knew what they were doing, that it was natural, but that didn't change my thought process. She was suffering, and they were doing nothing about it. It seemed only logical to me, that if I hurt them, they'd help her. They finally did something (emergency C-section) when my son went into cardiac distress. It probably saved them from winding up in the ER and me winding up in lock up. My point?
Men are wired for fight or flee scenarios, and regardless of how 'civilized' we pretend to be, beneath a very thin veil of civilized upbringing, basically we are still animals under the skin. I (knock wood, so far) have never had to deal with either of my sons (both now grown) facing a serious illness like crohns (closest was a meningitis scare when my oldest was a baby), but I've been to countless doctors, pediatricians, ERs, etc., over the years with cuts, strains, sprains, broken bones, what have you, as a single parent, AND I made it a point to casually advise the doctors that if anything happened to my sons because of their in-action or inaccuracy, well.. then they'd have to answer to me.
 
Rowan had a great day today... We went to a farm to see all the animals. They loved it. She rode her new bike around the block. My friend I went to see last night gave me this really cool game that has a bike with it, you plug it into the tv. She played it twice today. She didn't eat really good at dinner but she ate her protein so I was happy. 3 Nutren Jrs today too. Last night was less blood so I am hoping we keep that trend. I have been pushing the miralax later by 3 hours every night. So hoping it will not keep her up qt night now that we give it before bed. She is now on the lowest dose. I am hoping it is the right amount. I did let her have some pizza today but that doesnt seem to usually bother her to much. Trying to stop giving bread and milk. She is getting all she needs to drink from these 3 shakes and tons of water. I hope she is doing well, I am still praying for the remicade to keep working. I do have to keep in mind that her colon was messed up pretty bad. The rectum is the last to heal. I just want her to be happy again.

The night away was good for my brain! I got to sleep in until 10:30am too. It was nice. I needed both. I had one beer and felt like I was all messed up. lol. I never drink anymore. Such a light weight.
 

DustyKat

Super Moderator
Oh my giddy aunt! How fab to hear that Rowan had such a lovely day! Bless her...:hug:

Everything and I mean everything is crossed Mary that these days soon become the norm!

Dusty.
 
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