Son just had operation,questions about recovery

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concernedparent
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 6/28/2010 5:49 AM (GMT -7)   
Hello All,
 
My son just had a resection surgery a week ago and all went well but I was wondering if somebody could answer some questions. One is how long after you started eating solid foods did you first have a solid stool. Second is when did you start gaining weight back after the surgery? Heis getting frustrated thinking that the diarhea would be a thing of the past after the surgery but now it is actually worse than before surgery and he is losing patience with recovery.

tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 6/28/2010 5:58 AM (GMT -7)   
Hi- it's been about 9 years since my resection surgery but yes I remember that extremely loose stools were common for a good long time after that surgery. I *think* they told me it was because of some valves being removed and the intenstines had to sort of learn to work around this? It was a very long time before I had a solid stool again, I distinctly remember this. I'm sorry to tell you that :( Unfortunantly I may be having a second resection sugery within the next few weeks and I am not looking forward to this again.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/28/2010 5:59 AM (GMT -7)   
His body has just had a very traumatic event. You didn't say if he had open or lap surgery. I had open surgery, which is pretty invasive, but either way, you need to give your body time to adjust. One week is barely any time. Depending on where his resection was he may never have BM that are exactly what he had before. But things will change as his body heals. He will gradually have fewer BM's a day and gradually he will gain weight. It won't be overnight. He needs to take a longer look at things. At the end of each week, look back and see how much better things are than they were the previous week. He won't see the changes daily.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


concernedparent
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 6/28/2010 6:13 AM (GMT -7)   
He had open surgery with 12 inches of intestine removed and doctor said he has 152 inches left. And two fistulas were repaired also and he also had stricture plasty work done.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/28/2010 6:13 AM (GMT -7)   
I agree with Zanne. You also need to understand that your body has just gone thru some traumatic changes, and it will take time for everything to settle down. Most have explosive diarrhea for a bit after a resection. I did after both of mine, and it settled down a few weeks later after my body adjusted to the surgical changes. Tell him to remember they were in there cutting and manhandling his intestines, and it will take a bit to recover. Make sure he gets on to some kind of maintenance meds so that he doesn't have to have a repeat. Here's hoping his surgery leads to a long remission. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

concernedparent
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 6/28/2010 6:57 AM (GMT -7)   
He is leaving for freshmen year of college at the end of August and is hoping he feels better then. He keeps this all in and doesn't want anyone to know he has disease. He even went as far as deleting any posts on his facebook account referring to his surgery and recovery.He doesn't want special treatment or people feeling sorry for himself.

appy.lovee
Regular Member


Date Joined May 2010
Total Posts : 88
   Posted 6/28/2010 2:14 PM (GMT -7)   
it has been 3 years since my resection surgery and I have yet to have a solid bm.
imagination is stronger than knowledge -- myth is more potent than history -- dreams are more powerful than facts -- hope always triumphs over experience -- laughter is the cure for grief -- love is stronger than death.


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/28/2010 2:26 PM (GMT -7)   
It took me about 3 weeks And when I did finally have solid movements it was very painful at first. I took about 5 weeks for everything to work out. Tell him not to give up and to take it easy.
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 6/28/2010 2:45 PM (GMT -7)   
just to know once you've had that type of surgery, your body is never the same, I had 2 resections and 4 surgeries in total, your son is young and hopefully will take med's. i had my first surgery at his age, then a few more in that ( I call it sick year ). I bounced back and was back at work 8 weeks after my first resection, remission for many years, but no med's. it came roaring back. now pred and soon rem. actually tommorrow.
artist guy


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 6/28/2010 4:24 PM (GMT -7)   
I agree with Nanners and Zanne. He needs to give it some time for his body to adjust and heal. I had explosive smelly "D" for a couple of weeks and the doc said my intestines need to learn again.
After I believe a couple months following my surgery I was still not having regular BM"S and started getting burning and itchy bottom. Doc put me on Questran to help bind with the Bile in my intestine. I have been really good ever since unless I miss my dose of Questran or eat something that doesn't agrre with me but for the most part I feel good.
Remind him to be patient and ask his doc about Questran, maybe that will help. This is just my opinion as i am not a doctor.
I hope he feels better soon.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


DebbieCrohns
Regular Member


Date Joined Nov 2005
Total Posts : 174
   Posted 6/28/2010 4:39 PM (GMT -7)   
Hi Concerned Parent,
 
I am sorry you and your son had to go through this.  My daughter was diagnosed with Crohn's right out of high school.  She had a resection in February, 2005, and has been in remission ever since.  I can't remember exactly when her system got back to normal, but I do remember that 2 1/2 months later (which, if my calculation is correct, is when your son will be gonig to college), she felt much better.  If you like you can email me and I'd be happy to talk to you.   I know how stressful just going to college is, and having this in addition makes it even harder.  However, it is doable.
 
Debbie
 
*I removed your email addy, as spammers will surely hit it when on open forum.  Go into control panel and edit your profile to list your email there*

Post Edited By Moderator (Nanners) : 6/28/2010 6:01:31 PM (GMT-6)


concernedparent
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 6/28/2010 6:40 PM (GMT -7)   
To All,
 
This is such a great forum board and even though I am not on here all the time the times I do post, the replies I get are fantasic. From what it sounds like it will vary on if and when he will get back to somewhat normal stools again. I wish his diet was better also which might cause part of his issues but he doesn't want to change it. I pray for all of you that have gone thru the surgery and have the disease also because I see what it has done to what was once a normal everyday kid .

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/29/2010 1:52 PM (GMT -7)   
It was several months for me - in fact I got to the point where I thought I was going to be able to eat any thing I wanted and not have to worry about gaining weight - one morning I woke up 30 lbs heavier. He'll be fine concernedparent - I know it's hard but try not to hover. He's going to have to work through this and a lot of other stuff when he gets to college but he'll do it - you just watch and see. How do I know this? I've worked at a large university for 26 years and seen thousands of undergrads make the transition to adulthood. I've also got two sons out of the house and in graduate school.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/29/2010 1:53 PM (GMT -7)   
It was several months for me - in fact I got to the point where I thought I was going to be able to eat any thing I wanted and not have to worry about gaining weight - one morning I woke up 30 lbs heavier. He'll be fine concernedparent - I know it's hard but try not to hover. He's going to have to work through this and a lot of other stuff when he gets to college but he'll do it - you just watch and see. How do I know this? I've worked at a large university for 26 years and seen thousands of undergrads make the transition to adulthood. I've also got two sons out of the house and in graduate school.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/29/2010 1:55 PM (GMT -7)   
concernedparent: let him handle the diet issue - if he's old enough to go off to college he's old enough to know what's working for him and what's not. And he's still a "normal kid". In fact he's going to be even more so - he could be in total remission for years now - enjoy it and let HIM enjoy it.

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 6/29/2010 8:42 PM (GMT -7)   
Concerned Parent, Hoping your Son gets backs to normal before taking on College. Sorry to hear that his diet is not the greatest. That's a hard issue to drum into a young IBDer and from experience of my own IBD Daughter during her College days, the diet tends to get worse at College, at least in the beginning! She went off to College soon after her diagnosis and we hadn't learned all there was to know yet about IBD before she left. She was also a bit in denial about it because it was so new. She was NOT in remission the first 4 years of her 5 year College adventure so it was pretty wicked in constant health issues.

Nor did my Daughter want anyone to know or feel sorry for her or give special treatment, but after a very, very wicked first Freshman semester she registered with the Campus Disability Services
which helped much in keeping her education moving forward despite her IBD wanting to keep her going backwards. I had visited the Disability Office during the Spring Parent Orientation weekend and picked up the paperwork needed for her GI to fill out and sign which we did before College began. Daughter never turned it in that first semester, but she rushed it there before second semester began.

Hoping your Son has a wonderful College adventure with minimal health issues! Should he run into issues Disability Services is there to help. They keep the health issue confidential and only let the Professors know by a letter that the Student is registered with the Disability Office and that they must comply with any special needs of the Student whether it be not being penalized for more absences than are allotted per semester, the option of make-up tests and extra time for turning in work if the student becomes ill. Also Priority Registration is usually included which
was a dream come true for my Daughter to be able to get into classes she needed at a time of day that suit her guts best which was more towards the afternoon hours. She got to register with the upperclassmen before the classes got full and it really did help in keeping her moving forward to completion of her degree despite what IBD was doing to her behind the scenes. Her Professors were wonderful and she was upfront with them all with what she was dealing with. Some went above and beyond the call of duty to make sure she didn't give up when she was feeling dreadful.

Much luck to you too Mom!! It's hard sending an IBDer off to College, but they really do swim well with it after a few lumps and bumps in the road!! :-)

*Bibi*
Regular Member


Date Joined Mar 2010
Total Posts : 49
   Posted 7/2/2010 11:45 AM (GMT -7)   
I had surgery in early April, and they told me if I didn't eat much sugar and ate pretzels and potaotes and other starchy foods, I could potentially have solid BM's. I tried that after about 2 weeks, and it did give me solid ones, but they were quite painful. I understand how irritating the constant D is, but after having a few solids, I gave up on them for awhile, as when you are healing, having anything other than liquid going through can be QUITE uncomfortable. I think today is my 3 month anniversary, and I have really just adjusted my eating schedule, eating 2-3 times a day, at times when I know it will be ok if I have to go to the bathroom, because usually 20-30 minutes after I eat, I have to go...

I just recently gained 3 pounds too, so it does take awhile (and in my case, A LOT of eating...)

However, if he really wants to pursue solid BMs, maybe try eating pretzels and cheese -- anything that will dry you out, or bind you.. That, and don't drink within 30 minutes of eating.. That's what they told me to do, and it seemed to work. Also, if that doesn't work, maybe you could contact the surgeon or GI and see if he could take immodium or something similar (they told me about some tablets you crush up in yogurt that help to solidify the BM's... ((sorry I can't think of the name....)) )

As for the college thing, I think my parents worried about me going to college, as I was diagnosed when I was 17.. I went in with an incredibly healthy diet, and then decided I wanted to be a "normal college student." I quickly learned that would not work -- not to say I have the best diet, but I do know what will set me off... Ultimately, he may not have the best diet now, but he will probably realize that he needs to adapt sooner or later.
Diagnosed at 17, currently 23 :)  Have had 1 resection so far.  It's been an adventure!

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 7/2/2010 6:10 PM (GMT -7)   
I had a resection nearly 4 years ago and still battle with the diarrhoea, the doctor put me on questran but sometimes it doesn't help at all.I constantly need to take loperamide as well to keep the diarrhoea a little more under control,I dont think the diarrhoea ever goes away, as someone said if they have removed valves this plays a big role in the type of stools one has. The only time I have had anything like a solid stool is when I have a flare up but obviously the food you eat can also play a big role as well. I am on a low residue or low fibre diet which does help some what , it takes time to know exactly what you can and can't eat to get a decent balance. I make sure that after a meal I am close to a toilet just in case,so choose to have my bigger 'evening' meal when I am at home, whether that be at lunch time or evening.
I hope your son finds relief and I know there are cases that the diarrhoea does clear up and ppl do have a semi normal stool, whatever that be!!
Good luck!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


concernedparent
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 7/19/2010 5:30 PM (GMT -7)   
Just an update after one month. Son still has diarehea and doctor has let him try Immodium but hasn't worked so he prescribed Colestripol and we will see if that does any better. Also within last couple days he has gotten back the heavy burping and gas problem he had before surgery.

He was so upbeat right after surgery thinking he would soon start feeling better but now is depressed again , angry all the time, and questionig why he even had the surgery. He has even changed his diet a little bit giving up soda and eating better and is not seeing any results. Again I can't say how sorry I am to everyone that has this disease and I hope they find better ways to fight this crippling disease soon.

LiLa
Regular Member


Date Joined Nov 2007
Total Posts : 106
   Posted 7/20/2010 3:42 AM (GMT -7)   
Hi Concernedparent,

I can completely relate to your son's situation. I was very angry and upset that i had to have open surgery & a scar at 18. I also tried to keep the whole thing a secret apart from my family knowing. To me it was extremely embarrassing. My friends were not impressed when they found out i had kept it from them!!
I had the ileocecal valve removed in the surgery and that's why the D came back with a vengeance afterwards. It was only 3 wks later when my doctor suggested Questran/ Cholestyramine that the D started easing off and eventually stopped. I was so thrilled. Along with a reasonably sensible diet, i was fine. For me anything with sugar is a NONO so i just gave up soda & sugary foods which wasn't difficult at all. I would say to make sure he's put on maintenance meds as i was never put on them and 11 yrs later i may be facing surgery again. But i was lucky to have 9/10 good years after the surgery, and that was without any meds! So there is still great hope for your son.
Best of luck with everything and keep us updated.

Lila

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/20/2010 5:22 AM (GMT -7)   
I agree that Questran may be the trick. It sounds like you have the pill form. I found that I can take one instead of the 4 that were originally RXed me and that would slow things down enough for me to function. In powder form I only needed a teaspoon, not a whole packet. It is one of those things that your son will need to try and find the right dose for him. Some people do really well on this med. For me it causes a lot of cramping and bloating, so I only use it when I have to travel and bathroom access will be limited. But others here have found that it is the drug that gives them their life back. For me immodium works better.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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