C's surgery thread

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Sounds like things are going well. Glad he feels like eating. I agree, so long as the food is coming out the other end it should be fine. If you're worried you could always double check with the surgeon.
 
As long as he's continuing to feel good, I think the eating should be fine as well. But, if you want to lighten up the 'workload' on his bowels, make some of his meals low residue/fibre and/or have him drink a shake or two (between meals) and see if that satisfies his hunger. I know S will just grab a shake if he's hungry but is too rushed to sit and eat something.
 
Ok I'm not going to fret over it. His bms are good, in fact he's said they were really formed with no mucus, so that's great!

LauraJ, C has SpA(spondylarthropathy) as well as CD so I think some of his back pain is related to that, he is using the tens unit as well as heating pads for relief but I see a rheumatologist appt in the near future. Time to get the ducks in a row and decide on a biologic for both CD and SpA. Hopefully, the rheumatologist will communicate with his GI. Rheumatologist is out on baby leave so appts are difficult.
 
Were you able to get an appointment with the rheumatologist who diagnosed him or the ped rheumy? I bet he'll feel a lot better once he's on a biologic!
Glad he's eating well! Hope it continues forever :)
 
Hope you get meds quickly to help the JSpA.
One thing that might help in the mean time
DS got a therabath
High end parafin wax ( meducal grade) for his hands.
You can take strips and dip them in the wax and place them on the back neck etc...
It is the only thing that has stopped the stiffness so far in his hands.
 
His rheumy appt isn't until Oct. It is with the original one because the wait list was too long for the ped.

His moving about a little better, more straight up so not as much back pain now.

He is still eating well and got out and about yesterday.


His follow up is two weeks from now and they will be repeating nutrition labs.
 
I am truly just in awe of how quickly he is recovering! He is eating well, normal bms, no serious pain and getting around really good. He is no longer taking the Tylenol on a schedule and hasn't asked for any today. He has mentioned going on back to work once he has all his school work caught up.

I'm calling the GI tomorrow for an appt to discuss the maintenance med.

I won't say that I wasn't anxious about surgery but C's attitude about it did make it a lot easier. There were definitely bumps, I mean apparently anesthesia and pain meds completely shut his bladder down but on the whole C has done well. I just hope with the right maintenance med C can enjoy a long remission.
 
I am so glad to hear how well he is recovering! It is just amazing to see how teenagers can heal so fast and a good attitude really helps as well!
Reading this post made me so happy. It is so good to hear when one of our kids is doing so great!!!!
 
Woohoo!

Next up... reminding him that even though he is feeling great, he still needs to chill. No lifting, no marathon training, no go go go. The six weeks of no activity felt like forever for us. DS was chomping at the bit at 3 weeks! Joined the tennis team a week after his restrictions were lifted. Crazy kids.
 
I know, Mehita!! C is already wanting to go back to work. I have a call into the surgeon as his instructions were fairly vague. He said absolutely no lifting of anything over 10 lbs for six weeks but that C had to determine when he was ready for other things. Well, C thinks he is ready to start back to work.

It wouldn't be heavy lifting or anything but he would be on his feet for many hours and I would rather him just take it easy until surgery follow up and GI follow up. I don't want anything to interfere with healing!

Teens!
 
The work question may answer itself. He spent the day before yesterday working on his audio system in his car. Yesterday, the middle of his back was really bothering him. I think SpA but he is always quick to say no not the same place or feeling. Anyway, he fell asleep before 8pm and woke up at midnight needing pain med for his back.

Follow up is next week so I guess we will go from there. Week after that is GI appt so more info there.
 
Yay staples came out today. All is well. We explained to the surgeon that this past Saturday C noticed a lump or knot located where surgery qouldve been, it was tender to the touch and sore. Surgeon felt all around, said he wasn't worried about it and things looked great.

C goes to his GI two weeks from today for decisions on maintenance meds.

I'm really surprised at how little of the pain med C has used. He came off the Tylenol after the first day discharged and in all has taken two of the dilaudid(1 pill halved for back pain and 1 pill a few days later for the same).

Restrictions now: no lifting over 10 lbs for 4 more weeks.
 
Great news!!! Really so glad he's recovered from the surgery so well. :D

(How's J doing?)
 
J is not so eagerly awaiting her scopes next Monday. She has been taking her vitamin B12 nasal spray. I am wondering how long you wait before retesting B12, I'm going to ask doc, but I am assuming 3 months? Maybe 6?

She is really busy with college classes and work and social life. She complains of fatigue but honestly, with the constant go, go, go I'm not sure if it isn't just normal?
 
I've mentioned this before and may help in the scope prep for her... (S had a horrible first scope, but his second, was no problem at all!!)

A few days before the actual prep, I started S on low residue foods (white bread, pasta, chicken, etc.), the day before 'prep' day, I gave him only broth with noodles and a little chicken and shakes, then followed instructions on prep day. His 'prep' day was absolutely no problem! It was as if he wasn't even prepping, it took nothing to clean him out. (The first time, hours of nausea, vomiting, pain, enemas, etc. - horrible, horrible experience - although this was when he was being dxed so that probably contributed to the difficulty.)
 
Yes, I think this is the schedule we are going to follow as well since she will be prepping in a hotel. Of course I won't be with her the day before prep but I've given her a regimen...hope she follows it!
 
Things are going well. Staples are out, he is doing most anything except lifting over 10lbs. He has that restriction for 4 more weeks. He isn't packing on the pounds but the surgeon wasn't concerned and felt we would know more when the GI appt rolled around. No pain left from surgery, maybe a little more careful when jumpting, running etc but he's still got butterfly stitches for a couple of weeks.

He is going with friends to see the Braves play Sunday and looking forward to it. He is eating normally and seems to be on a better sleep schedule(almost normal) which is awesome!
 
I just want to get this weight thing figured out. I hope this is something that given time to heal will come naturally! But yes I'm estactic that he is recovering well!
 
I'm sure it's somewhere above and I've missed/forgotten but what is the plan going forward, as far as meds?

IDK from personal experience but I would think, after surgery, the body exerts extra energy at healing; perhaps this causes slower weight gain for a little while?? Regardless of meds, if you could convince him to drink a couple of shakes a day, it certainly wouldn't hurt. S's GI said he didn't feel it was necessary once S was on remicade but, I convinced S otherwise. (I still think the extra calories and nutrition can only help.) :) For a while, the selling point was the extra protein in the high protein shakes so he could 'build up' a bit (as long as he was drinking them, I was fine with whatever 'selling' point worked!) and now, it's just become habit for him.

But, still really glad that he's just recovered so well!! :D
 
Reread the whole thread and have to say it is great to see the progress. So it has been a month now. Looking back is there anything you wish you knew then or wish someone told you or would have done differently?

How is everything going?
 
Supportive Mom, C is doing well. He is back at work and not having issues with that. He still can't lift over 10lbs for two more weeks.

He has two laparoscopic cuts(1 at his underwear line and the other on his lower rt side) then a 2 in cut through his bellybutton(vertically). The are all healing well and aren't causing issues so far.

Going back over everything in my mind I think I would've listened to C more during the hospital stay about the pain meds and his inability to pee. He wanted the pain pump gone or backed off from the time the catheter was removed but we(the nurses and I) resisted. But when we gave in and they disconnected the pump he handled the pain with Tylenol and didn't have the fear or discomfort of not being able to pee.

Overall, I think C had an good experience. There was only the blip of the pain pump being out the first night and then us not listening when he was ready to back off the pain med later on. This didn't affect his recovery, he was still up and walking and sitting up on schedule so I guess nothing to really complain about.

He goes this next Tuesday to the GI and we will decide on his treatment going forward.
 
Thanks for the info. I am glad to hear of the positive experience. Keep us posted. I am hoping D's surgery goes just as smoothly and this gives me things to think of & look out for.
 
We had the appt today with the GI.

C will be starting back on remicade. Instead of the loading dose schedule of 2 weeks, 4 weeks, 6 weeks he will do his first dose then 4 weeks later second loading dose, then 4 weeks later another loading dose. The GI said statistically allergic reactions occur on second loading dose(at 2 weeks). He said although it isn't documented in the PI, docs have found this revised schedule has cut down allergic reactions when
re-starting remicade after discontinuation.

C is back on a calorie goal intake, GI went over calorie goal and checked out the app C will use to record and insisted C take in 2 boost or ensure plus shakes a day. We will follow this regimin until next appt and then decide what to do.

Lastly, C's wound has some issues. It's has granulomas(I think that is the word he used) and the wound was breaking down. For this reason, he is to see a wound/ostomy nurse. I make the appointment tomorrow.
 
I'm curious Clash, why Remicade and not another Anti-TNF?

M has been on Remicade 3 separate times and hasn't had any problems. The first two times we did the normal loading doses and the third time we did 0, 3 and 6.5 weeks (not exactly sure why, but that was with the high dose Remicade). We do benadryl and tylenol (by mouth) and nothing else. So far, no reaction (thankfully). I hope it goes smoothly for C!
 
Really the decision was left up to C. The GI said they removed 10 inches of bowel and that there were deep chronic ulcerations and fissures with narrowing. He is hoping that piece of bowel was just too far gone for pharmaceutical intervention and now that the bowel is pristine that anti tnf drugs will work. He's willing to give them a shot anyway. The plan is to try remicade and by the time we have a yea or nay as to its efficacy it will be time for C to prepare for college and we can decide if we want to try another anti tnf or give up and move on.

I hope that isn't too garbled to understand, my mind is swirling!
 
Keep us posted about what the wound nurse says. I am trying to think of ways to promote wound healing. I have used colloidal silver droplets to promote healing on a wound. It was a long time ago but I remember it did help. Did the doctor say why he thinks it is happening?
 
He said a lot but it was involved and I was a bit shocked so it all sounded like banana, banana, banana. I am hoping the wound/osotmy dept will explain everything.
 
Supportive Mom, thanks. When we were at the hospital I saw the wound/ostomy dept and thought it was weird the two were combined but the GI said it was common. We are going to a hospital closer to home. I think it sorta surprised C when he said ostomy since C doesn't have an ostomy!
 
Not sure on why remicade again if it didn't stop the inflammation for progressing last time ....
As far as granulated tissue most stomas ( gtube or ostomy) tend to for it.
There is a special cream
Trimethosolcone (???)
 
I know it sounds silly, but have you tried diaper cream? Zinc is needed for healing wounds, as he is still recovering from surgery he might not be absorbing as much as his body needs, so maybe some topical zinc may help. My kids call diaper cream "magic cream"
My husband has granulomas gangenosum and was given super strong steroid cream, 2 applications and the wounds he had had for months disappeared.
But seriously, give diaper rash cream a try, make sure it's the highest zinc oxide you can find, or even the kind for in continence, my husband used it after his duodenal ostomy was reversed, it's 32% zinc
 
We are hoping that with the long term chronic inflammation and damage removed that the remicade will be able to get the job done. Among the tnf Alfa meds it is still the one that has been proven the most effective. It still may be that anti tnf meds don't work at all for C but C isn't ready to give up on them or remicade in particular since it changed his quality of life so entirely after the first infusion. And as of Sunday, he turned 18 years old.

Yes, I understand the granuloma/stoma aspect but C doesn't have a stoma, gtube etc. I just never connected the IBD surgery wound and the ostomy dept since he doesn't have a stoma. I've heard of would healing depths just didn't realize they were combined with ostomy care.
 
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Thanks for the tips on the wound healing. I'll bring them up at the visit with wound clinic. I doubt C would be willing to try anything I offered up without first discussing it the nurse/doc whoever we see. Kids. He wouldn't even let me bandaid it when it was leaking so he could get senior pics done.
 
Remicade did not work well for M the first time. The second time, at a higher dose (and we added MTX, just 15mg) it was a miracle! It only stopped working when M refused to take MTX because it made her so nauseous.
Don't lose hope, especially if his GI thinks it's worth a shot!
 
Thanks!

So, we have to go see the surgeon instead of wound care as insurance requires it until 90 days after surgery. The GI was hoping we could get around it with a surgeon release but no such luck. We see the surgeon next Friday, I asked could we try the various tips mentioned but the nurse said do not apply anything and leave completely uncovered until appt.
 
I hope the wound healing doesn't bring on any complications. :( His recovery has all gone so well, I hope it continues that way! :ghug:

And, of course, :birthday2:

... but, regardless of age, they're always our babies! :heart:
 
Tesscorm, C was rambling about that last night. He said, "In all matters, that include freedoms and independence, we should consider him grown but in anything else I should treat him as my little boy." I told him it doesn't actually work that way and he'll always be my little boy. They always want the best of both worlds! Ha!

Starting with yesterday's appt. I had C take control in many ways. I told him to write down all of the concerns he wanted to address. I told him that I would offer advice if he asked for it but he needed to start recognizing, acknowledging and addressing the facets of this disease and how it affects him. I thought he did really well. He made a list of what he wanted to discuss and then asked my opinion. He had covered everything I would've except some nutrition labs the surgeon had mentioned but never followed through with.

For his first infusion he has made a list of labs he wants them to run and has included a good many of what I would have asked for. It makes me so proud to see him taking control of his illness and it's management! Though it is hard a times to be sidelined to some degree!
 
Clash, he really sounds like such a responsible young man!! Moving from teen to (young) adult isn't always easy for either (teen or parent) and it's not a straight line... To be honest, I think he's kinda right about 'in these matters...', I'm finding that's how it is with my two... their independence/control in some areas has grown more and more but, in other areas, there's still quite a bit of 'coordinated effort' ;). Overall, I think we've had only a few bumps in the road. But, definitely easier when you have someone that shows the maturity that C has shown! :thumright:
 
Apparently wound and ostomy care are combined as technically an ostomy is an open wound according to a nurse friend.
 
LauraJ, yep that is how the GI explained it. The nearest hospital with this service actually has a wound care center with hyperbaric chambers and is divided into diferrent specialty segments.. C will see surgical wound care, a wound/ostomy nurse comes into play if it is accompanied with home health care which his is not. Of course, all this is moot since we are under the care of the surgeon for two more months.
 
Sorry to hea that they are making you wait to see the surgeon. It I guess it makes sense in some ways.
It sounds like he is really growing up. That is awesome! I am so not ready to hand my girl the reigns of control yet. She turned 17 last week.
 
Not to worry Kim... it's a gradual process! S only takes the reins under my control! :lol: Actually, I think our kids tend to surprise us with their knowledge and understanding (at least, I've often been surprised :blush:). I think my role has become more as someone who makes sure things are coordinated (ie follow-up scope not scheduled during exams) and recommendations followed up... S certainly hasn't had alot of complications but, even when his GI was recommending the move to remicade, S's questions and use of terminology surprised me. They may not say much but, I think they do listen and learn. ;)
 
I agree Tesscorm, there are some things C easily takes care of but there are others that he doesn't even ask to handle. I think C finds it easy to assert himself and be confident with his GI because they have such a good relationship(love this ped GI and dread when we have to move up) but I don't think he's be as in charge with the rheumy, different personality altogether.
 
C had his appt with the surgeon about his surgical site yesterday. He hasn't been worried about the area but when he got out of the shower yesterday there was something slightly protruding from the site and it was bleeding. I haven't often seen C painic but he did about this. He apparently pulled at it thinking it was a wayward staple the surgeon missed but blood and discharge came out and when he let it go it snapped back in. He was really panicking when he got to me. He wanted to call the doctor on the spot, I tried to explain the doc was going to say I'll see you at the appt.

I calmed him down on the trip though he was convinced it was serious. By the time we arrived at the appt he was mostly back to his laid back self. So the doc explained it was a suture and would be absorbed and gave us some new steps for care of the wound.

Then he began debreeding the wound and oh my I thought I was going to pass out. He took the long q-tip thing and jabbed it in all the openings at least 1/2 to 3/4 inches in. I thought C was going to come off the table. He would then palpitate the area around the wound and C was white knuckling the sides of the table as the doc did this. This went on for a few minutes while the surgeon got all the drainage flowing. He then added some cream and it was over.

He said that he isn't releasing us and set up appts to care for the wound. He hopes the wound will start closing up the proper way but if not we will try something else.

Holy cow that process looked so painful. It made my stomach hurt! C is back to himself and all is well but I may come unglued if I have to watch that process again! Yikes!

But all's well that ends well!
 
Oh :eek: that sounds horrible, poor C (and you!!)!! Glad he's following up a bit more but I hope the wound heals cleanly and quickly! :ghug:

But, happy C is back to himself! :D
 
I know it had to be done but whew it was hard to watch! When we were in the hospital after surgery several of the nurses warned us the surgeon didn't wear kid gloves when doing the after surgery evaluation and to expect it to be painful. They were even surprised when we told them it went well and the surgeon must've been pretty gentle. Boy, did we see the other side yesterday. The surgeon is all business anyway, not a lot of smiles or chit chat, and no warning yesterday, he just went to work jabbing and pushing.
 
Oh geez that sounds terrible. It made me nauseous just reading it! Poor C (and you)! Was it very painful? If it was, could he take his pain medicine before he goes next time?
 
C said it was really painful but only in the moment. I asked if he wanted to take pain meds next time and he said no that the pain didn't last long enough for that and he didn't want to deal with the icky side effect of the pain med(nausea/dizzy headed) for that short of benefit.
 
Oh man, I have missed SO much with this bloody access problem! :yfrown:

So good to hear that all is going well with C, aside from the wound issues. :ghug: Shame the surgeon doesn’t have a better bedside manner but unfortunately you do trade that off with some of the better ones. I often think it is because the most time they spend with their patients is when they are unconscious and they need reminding that they aren't always under an anaesthetic. :eek2:

I do wound care so I would be interested know what they using on it. A pic would be nice too. :lol:

I hope the wound soon heals up and it is Onwards and Upwards for C!

Dusty. xxx
 
I doubt I can get C to take a pic he is funny about letting anyone see it, but I will try. So the cream the doc used started with an S but I don't know if I can pronounce. Actually, it sounded like a burn cream they used on my daughter a long time ago.

Apparently, it wasn't draining appropriately and so now we have to apply loose gauze because the procedure should keep it draining? C and I really don't understand how it won't just do the same thing.

Ok my attempt at the cream name...maybe sylvadine?

I just don't want to have to witness that whole "opening the drain holes back up" thing again. I was in a wreck as a teenager and had severe road rash wound and the hospital sent someone out weekly to debreed(think that's the word) it. It was horrible even with a pain pill they would give. Coumpounding the horribleness was the fact the wound was on my arse!
 
Sorry Clash :redface:, C doesn’t have to take pic, I was joking as I figured it would understandably be the last thing you both wanted to do. I am just a ghoul. :lol:

Damn good attempt Clash! :thumleft: It is Silvadene otherwise known as Sliver Sulfadiazine Cream and is normally used for burns but does have other uses and as Kim found, silver can be very good at healing wounds.

If you mean packing some loose gauze into the wounds? This is done to hold the wound open. When you have a wound that is deep with an opening that is smallish the wound has a tendency to heal faster at the skin level and so leaves a unhealed wound underneath. In these cases it will either keep breaking through the skin or will burrow back in the other way creating a sinus. Loose packing with gauze allows it to heal from the bottom up.

And damn good attempt with the second term too! :ybiggrin: It is debride.

Dusty. xxx
 
Thanks, Dusty! I was hearing the terms but didn't k ow if I could come close to pronouncing or spelling them correctly!

No I meant the doctor felt his gouging and routing cleaning it out and opened it up. He is hoping from there it will do it's thing. I hope so too because packing is definitely sounding worse that gouging. Yikes!
 
Noooooooo….packing is way better than gouging! :lol:

Sending positive vibes C’s way for uncomplicated healing! :)

Dusty. xxx
 
Wow, sounds awful! Hope he doesn't have to have that done again :eek2:. Also made me feel icky reading it, you poor thing having to watch. Hope it heals well now
 
Clash,
Ugh that is a horrible experience. Silva dense is an excellent cream for healing we used it a lot in nursing.hopefully he heals up fast now. Is he taking a multivitamin? I am trying to think of supplements that help with wound healing.
Dusty,
I did not know you worked in wound healing. Can you think of any supplements to reccomend?
 
Protein is generally the first thing I look to if a wound is chronic. For many of the people I see there are also issues with with their overall health so I look to a nutritional supplement like Resource. If adequate oral intake isn’t an issue then I suggest an increase the more protein dense foods…meats, fish, nuts, lentils.

Also good multivitamin and at least 1,000 mg a day of Vitamin C may help speed up the healing process.

Supplements, like Zinc, that you have already mentioned Kim are also beneficial.

Dusty. :)
 
C's resart of remicade is Monday and I'm so ready. He hasn't had any issues but we are still fighting with weight gain. He is so frustrated and only wants to start ng if he can keep the weight when it is discontinued, I'm not sure who could guarantee him that. He's also mentioned periactin(the GI brought it up last year) but his issue isn't lack of appetite to me. He's been keeping a calorie counter but at 18 I don't k ow when he's actually recording what he's ate and when he's padding numbers. He swears he is recording it properly.

Wound is healing well, finally! It is so wild when it starts healing and you can see the improvement in appearance.

This kid is under weight but he is still gaining vertically, I just don't understand!
 
Matt and Sarah have issues with weight gain Clash but I do acknowledge that some of that is due to busy lifestyles and accordingly eating cautiously during the day.

With that said I have researched this in the past and there is a correlation between ileocaecal resection, malabsorption and being underweight whilst in remission. This applies to being underweight but stable in that weight number. I don’t have the studies at hand but I do recall that calorie intake was not the issue, it was nutrient and fat malabsorption that was the culprit.

So fab to hear the wound is healing well! :dusty:

Dusty. xxx
 
My daughter has weight gain issues as well (but is growing taller). We've done Periactin which helped her gain a few pounds. Unfortunately she lost those pounds as soon as we stopped the medication. We're doing Boost juice boxes now and she's gained 2 lbs and holding. Because she's doing so well otherwise I'm choosing to ignore the weight issue for now. Hopefully the GI agrees when we see him next week. Hopefully the weight will come in time for our kiddos!
 
Glad he is doing well, Jack's weight has seemed to plateau but he is eating so I'm just letting it go for now and just keeping in eye out.
 
M also has weight issues. The NG tube is helping a lot but I'm worried she'll lose it all when she's done with it. We use my fitness pal and I do it - at night, she just tells me what she's eaten during the day and how much. It works pretty well because I know she would forget to put in every single thing she eats!

I'm glad C's growing -- that's a good sign. Hopefully Remicade is all he needs. Hope it goes smoothly!
 
Ok I had a response typed out but lately the forum has been a bugger for me and keeps timing out I'll try again later. It won't let me thank your statuses either so thanks for the replies!
 
Will they premedicate him Clash? We did Benadryl and Tylenol because M has been on Remicade 3 separate times. Some doctors use solumedrol.
 
Ok trying to post again.

Dusty, your post seems to be what C is experiencing, he isn't losing weight he is just underweight and no matter of calories change that to any degree. EN does put the weight on him but once it stops the weight slows drops to that original number.

Jmrogers4, C gained weight from a place I would deem failure to thrive when starting remicade but he also eventually plateaued as well and that is the number he still hangs around even after surgery.

Dance Mom, even though C wants to try the periactin I'm a bit on the fence as his appetite seems normal.

Maya142, they are supposed to premedicate him, draw nutritional labs as well as the labs he would normally have for mtx and I'm going to push for vitamin checks.
 
A's appetite has always been outstanding. The Periactin didn't seem to make her eat more but she somehow gained weight. GI is considering it for her again. We'll see.
 
Most articles I saw stated six months post op for weight gain with catch up growth the same time.
Periactin did nothing for DS
But really increased the amount of food eaten by my oldest - non ibder .
Gained close to 10 lbs while on it.

I can say DS is still and has remained on supplemental en since dx.
When we drop it he slowly losses it been three years of 500-750 extra calories a day -everyday . Which is third of his calories almost but we still lower it occassionally to kept weight gain at a normal rate to match height.

I know for my normal kiddo it looks like this
10 lb gain quickly then 3-6 months of growth with little gain then 3 months not gain or growth then repeat gain again.
Which is why they track over 1-2 years not months since it can vary a lot until they stop growing in their twenties.

Is there a reason he doesn't want to continue to en at night plus food?
 
When C was on supplemental he started out at around 2700 calories of formula and then whatever he ate during the day. This is when he gained weight over 25 lbs. When the formula was decreased to 1500 plus whatever he ate he was maintaining the weight gained he was losing it although very slowly. When he dropped EN before surgery he lost down to the weight he was at before starting EN but stabilized there.

He says if his nutritional labs or any other labs were off and pointed to the need for supplemental nutrition he has no problem going back on EN but just to attain weight that will not stay once the supplemental EN is withdrawn, he sees no purpose in.

Just looking at his weight graphs from before EN, during the different levels and after. It would seem to me that full EN at 2700 calories was the only time he gained. Maintenance at 1500 didn't seem to show weight maintenance but a gradual decline. I assume at some point his nutrional labs or other labs would reflect this and his decision may have to change.
 
S was about C's age when he was diagnosed, so starting from the point of coming off a flare, S has gained weight in spurts. As he'd lost 20-25 lbs pre-dx, he regained that weight fairly quickly while on exclusive and then supplemental EN. Then, over the next couple of years, he gradually gained another 20 lbs, but it was in spurts, 10 lbs then nothing for a few months, then 5, then nothing, etc. (There were even periods when he'd lose a pound or two but I saw that as normal weight fluctuation.) But, throughout this period, he was taking in 1500 cal/night (5 nights/wk) of formula, plus three normal meals per day.

Since starting remi (approx. 1.5 years), he's stayed on 250-500 cals per day (1-2 Boosts) and gained another 5-8 lbs.

He hasn't had a lot of height growth, 1-1.5 inches, but he was already 5'10" at dx. Once he regained the lost weight, plus the first extra 20, he's really just filled out. ie developed less a boy's body and more a man's. It certainly hasn't been 'flabby' weight gain.

Perhaps, something for you and C to consider is that the reason to continue with supplemental EN isn't strictly for 'pounds' but that the calories PLUS the nutrition will help his body during the coming transition from boy to man. Whether or not S's continued use of supplemental EN has helped control is crohns is possibly up for debate but, I have no doubt the nutrition has done nothing but help his health in a general sense and any growth/development is dependent and a reflection of underlying health and nutrition.

Just my thoughts... ;)
 
I do think that there are valid points raised about continuing with EN. I can’t gain weight has not been an uncommon statement in the Diet forum over the years and why this happens to some people and not others is just as confusing and irritating as most things with Crohn’s are. :yfrown:

The studies that I referred to found that with equal calorie intake some people were actually deemed overweight and yet others remained persistently underweight. There certainly was a prevalence of underweight participants in the ileoceacal resection group hence the conclusions drawn that nutrient and fat malabsorption were the main offenders.

Is C concerned about his weight? If so then I would recommend to him to go the EN route again and for an indefinite period of time.

If not then and if he really doesn’t want to do EN then while ever his weight is stable, and he is otherwise well, I would have a tendency to not dwell on it and let him go his own way.

Dusty. xxx
 
Hi clash, I hope you don't mind me chipping in with this.

I really struggled with weight before my resection, and my gain was fairly slow after too. I wasn't on EN, it's not such a big thing here and because I was managing to eat they didn't bother having me on it.

Over about 6 months I managed to put on about half a stone then I relapsed at the year mark. Now though I've managed to gain a stone and a half on my lowest weight. I'm now a healthy 9st 2 ( around 128lbs I think) .

It's taken me a long time to get this far and there were a lot of times where we thought I wouldn't do it. But I found that when we stopped focusing on my weight so much and started to just let it be, I started to relax more and my appetite actually got better because I didn't feel like everyone was watching everything I ate. I found that when we were worrying about my weight I felt like everyone was watching me all the time and it felt like there was pressure on me to eat a certain way. To be honest at the time I didn't even realise it, but looking back on it I can see it.

I totally understand the worry about weight, but if he's not stressed about it then that's a good thing and may help him gain in the long run, so if he is stressed then it might be good to see if you can get him to relax about it a little. Don't worry if the gain is slow, it seems common for it to be like that. Im now 15 months post op and only in the last 1-2 months have I really stabilised weight wise. Granted this wasn't help when I flared, but mostly the last few months I've gained without making concious effort.
 
Before surgery I felt like C gained weight on EN because he had malabsorption issues. I thought the fact that when it was dropped to maintenance level and he still gradually lost proved it. I thought things would change after surgery. But though he eats 2700-3000 cal a day he really doesn't gain which leads me to believe there is still a malabsorption issue.

I seem to be the one most concerned about it. C isn't really worried about the weight unless it is a sign that his CD is active. The GI would like to see C weigh more but doesn't want to lose sight of the fact that genes may be playing a role. He seems to not want to force EN on C since he feels it is evident that the weight gain is not sustained when he comes off, his labs don't indicate nutritional deficiencies and that it is apparrent he has already came through puberty.

My main concern is C is underweight, at his current weight he looks really skinny but one illness or flare and a few pounds lost he looks sickly thin.

I think it would be easier if C was a younger child. I took the route of EN being treated as a med but C's stance is if the labs for nutritional status are normal then the med is not needed. I just don't have a stanceat this time that would override that. I'm hoping that we can determine more at his next appt.

Here's my thing, C is 18, through puberty, almost 5'8" and weighs 110 to 112.
 
Edit to add above, when dx'ed he was 95 lbs remicade brought him to 110 where he remained for one year or more. EN brought him to 136 but was lost when we backed down on formula and faster when we backed completely off.

Pre surgery 110 and now months after surgery 110
 
I can totally understand why you're worried. I know my parents and partner used to really worry about me when my weight was low, and my consultant was concerned too, and so was I to an extent, but not as much as them.

I can also understand Cs stance though, the en drinks feel very medical (I had a really short supply of them pre op just to build strength for a few days) and aren't the easiest to get down. Here we have powders called nutren build up and complan, you mix it with milk and it tastes like regular milkshakes. They have extra calories and nutrition and are less medicine like, I still drink them sometimes because I like the taste and they are good for iron.. Maybe if you could find something similar it would appeal more to your son and be a possible compromise?

I know it must be so hard as a parent. I started getting symptoms at 15 but was diagnosed at 19 and that meant all the responsibility was on me, I had to take myself to hospital at university a few times pre diagnosis and I always call the shots on when I go to A+E (mum will advise but I have final say), it was down to me if I had surgery and I make all my meds choices and I can't imagine what it's been like for my parents having so little control over what's been happening or what it's like for you now as you watch C take over. All I can say is that while he will drive you crazy at times, it sounds like he has a decent head for an 18 year old and he has a great guide. Chances are that deep down he is just as daunted by taking control as you are about giving it up.
 
Wow.... those are big fluctuations. A's weight only goes up and down by a few pounds at a time. His appearance must change drastically.
 
That is about Matt’s weight and height Clash. Matt is never going to be huge and robust. Never has been so I can’t expect it now. He has the leanness of a soccer player but not the bulk that some do, but TBH he doesn’t look out of place on a soccer field as there are others there that have the sort of build he does. He has no problem playing a 90 minute game, 5 minute half time break, and not being subbed the entire game where many others do. I tend to gauge his wellness off this too.

Just tossing around some thoughts and questions:

A normal calorie intake for a man is say about 2,500 calories. But what happens though if you have fat and nutrient malabsorption? Does that mean to achieve the calorie intake you need to increase and by how much to actually gain weight? C is on 2700 - 3000 which is maintaining the weight he is at, are we looking at 3500 - 4000? I don’t know but again I think it boils down to how he feels about it and his functioning at that weight.

I certainly hear you on your concerns about having nothing in reserve for the future as I see the exact same thing with Matt.

Now, when you say nutritional status is normal what are you gauging that off?

Is he supplementing with anything? As in vitamins and minerals.

Dusty. xxx
 
DanceMom, his weight doesn't fluctuate without the addition of EN to make him gain. At 15, he was dx and weighed 95lbs, after starting remicade he gained 15 pounds over a few months and remained around there for 2 years(110-112) until we started EN, during the first 12 weeks(2700 cal of formula + regular diet) he gained 24 pounds over the next 8 weeks he lost it(4 of those weeks was 1500 cals of EN + food and 4 weeks were after EN was dropped).

Without the addition of EN he stays between 110-112.

valleysangel92, C doesn't drink his formula, he can't the texture makes him gag and throw it up. He takes the formula through an ng tube. We have yet to find a formula he can keep down orally.

At, 110 lbs he is at below 1% bmi and I would think it would constitute FTT.
 
Dusty, I'm only going on what the GI said last visit. He said that he was concerned of what may happen if C became ill or had a flare and lost more weight but that none of the labs he had ran to determine nutritional status(i think those were the words he used) showed that C was in trouble. He talked about the height/weight of his sister, me and his father at C's age. C's father was the only one that weighed more but he was also 6'1" yet only weighed 145. His sister was 5'7" and weighed 97 I was 5'6" and weighed 95. So he says we shouldn't expect more.

When he was supplementing 2700 calories by ng tube and eating it would work out to be about 4000 calories and it would make C nauseated at times. I'm not sure if that was due to calorie intake or active CD since it was before surgery. But nausea was never a big thing for C with flares.

It makes me feel better that Matt is in the same range. C has a lot of friends and some are definitely muchlarger but I don't look at him aamong them and think he is severely thin.I mean he doesn't stand out although people are surprised when they find out his weight.

Crohns is hard, it takes something you may not even question in a non IBD person and turns it all inside out!
 
Oh and to add. Right now he is on vitamin D, B 12 and folic acid. He will have a vitamin panel as well this trip I hope, because the doc thinks C may need to get b12 shots since having the resection. This will be the visit that the labs will determine that.
 
One more thing(i know 4th consecutive post) I just wanted to say you guys are the best. I have all this jumble in my head and it helps so much to voice it, even if I make several u-turns in the process...

You guys truly, truly, rock! Thank you all!
 
Both you (15.3) and your daughter (15.2) had a lower BMI than C (16.7), all three of you were/are considered underweight.

I do wonder at times if increasing calorie intake on someone like C or Matt has the negative effect of creating issues like nausea.

Crohns is hard, it takes something you may not even question in a non IBD person and turns it all inside out!
Click to expand...

It surely does Clash and boy don’t we second guess ourselves!

Ah okay re: the nutritional status. I would suggest to the GI to include Magnesium and Zinc if he doesn't already have plans to do so.
Just my personal opinion and no doubt you have read my thoughts before. :lol: But I do believe that in someone with ileal Crohn’s the levels of certain vitamins and minerals need to be increased over that of the general population and therefore normal reference ranges are not indicative of an ileal Crohn’s persons needs.

Dusty. :heart:
 
Hugs clash
I know our big concerns pre dx were DS weight he was only 50 lbs abd had been for two plus years .

I think when the weight is so low its a valid concern on the what happens when the flare starts .... But he is not too far out post op and hasn't started the maintenance med yet .
Also if his JSpA is active then that can cause it harder for him to gain weight all by itself due to inflammation of the joints.

I think those factors complicate things a lot
 
I will definitely look into magnesium again. Thanks Dusty.

My little penguin, I read something about periactin being an allergy med? If C opted for it would he stop his xyzal?
 
Periactin is an old school antihistamine which happens the relax the stomach so it is good for stomach cramping migraines and appetite stimulant.
My oldest stopped zrytec while on it per the allergist
 

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