Take Down Surgery Ileostomy closure

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mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted Today 8:32 AM (GMT -6)   
turn I had my reversal/reconnect surgery! This was by far the easiest surgery out of the 3, not nearly as painful as the colectomy and the rectum removal. 4 months of wearing the pouch and I kind of miss wearing it already. This morning I woke up reaching for my bag then I realized I don't have one anymore. Its kind of like when you wear your sunglasses all day and even after you take them off it still feels like you have them on. The bag became a part of me in a strange kind of way, do you know what I mean?

So I cannot believe its finally over with...no more colitis, no more medical supplies - just wow!
Its only been 48 hours since my take down and I feel extremely healthy. Words cannot describe the relief and joy I feel at this moment.
I'm on a solid food diet today, this will be the final test to see how the j pouch is going to work and only time will tell if all of this time in the hospital was worth it. I will update this thread tomorrow to let you all know how I'm feeling and when I can go home. So far so good and I got to give a shout out thanks to my surgeon, team of doctors, my wife and all the ppl on the healingwell forums who supported me throughout my ordeal.

Again thanks for all the support! wink

Post Edited (mikeman) : 10/29/2009 5:34:50 PM (GMT-6)


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted Today 8:44 AM (GMT -6)   
This is a great story. I hope that the next few days continue to go as smoothly. My 18 yr old son has had his colon removed 8 weeks ago and is thus looking down the same road that you have taken. We love to hear good stories!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted Today 9:10 AM (GMT -6)   
Congratulations! Do be prepared to have some frustrating moments in adapting to some foods. But also remember that as the pouch learns to behave like a colon things will get better. Visit www.j-pouch.org if you need support.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted Today 10:45 AM (GMT -6)   
Hi, so glad its all over for you,hope you have a  very very long  healthy future from now on. Bev x

Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted Today 3:34 PM (GMT -6)   
Mike,

Wow, that's great news!! And you're so coherent for someone who just had surgery! I'm usually all hopped up on morphine and couldn't even begin to type up something so eloquent, let alone even attempt to get on the computer and go online, only two days after surgery. tongue You're doing great!! That's sweet that you missed your bag at first. I'd miss mine, too. Please keep us posted on your progress.

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted Today 6:13 PM (GMT -6)   
Wow- what a great story!  I am so happy for you:)  I have had an ileostomy for almost 3 weeks now and am very anxious for my reversal but am still recovering... I hope you continue to do well!  Keep us posted!  Did you have to have an epidural or pain pump this time around?  I heard the recovery for takedown was also difficult but it sounds like you're doing great!  How was your recovery after yourfirst surgery?
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 10/24/2009 9:33 AM (GMT -6)   
wow- I just had my reversal yesterday... Congrats Mikeman. I am still in the hospital of course but feeling ok- as long as I get my dilaudid. I had the bag for 7 months and I also had the 3 surgeries because I was so ill.

Have you gone to the bathroom yet? I went twice today and so far so good.

Please keep us updated--- I am a little nervous about butt burn. ORdered the Calmoseptine and have Desitin and Balmex just in case.

I also keep reaching for my bag-- so weird not having it.

Good luck :))
Jackie, 44
Pancolitis, DX October 06
Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- REVERSAL:::::: October 23rd -YEAH!


mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 10/24/2009 12:56 PM (GMT -6)   
Well thanks for all of the wonderful posts. I will try to update and respond to all. Im back home now, got discharged last night. The nurses and doctors were all amazed at how quickly I recovered from this surgery (48 hours). The dilaudid was a tremendous help for the pain and my wife couldn't believe I was up and walking 1 hour after waking up from surgery. I think most of my speedy recovery can be attributed to the positive thinking, euphoria from the drugs lol and pure motivation.

In the original post I said the final test would be how I would be able to digest solids. My first real meal of solid foods (pasta, fish) was very uncomfortable but not intolerable, I could literally feel my digested food emptying in to and filtering through the internal pouch. I think once my body works out all the kinks then I will be able to tolerate bigger meals. What I've ate so far has been 4 small meals Vs 3, soft pastas and rice with a delicate soft meat like fish. Not trying to overdo it with pizza or hamburgers. I've sort of prepared myself for setbacks and I have plenty of the calomine butt cream (haven't really needed to use much) but honestly so far the j pouch is not as bad as all the horror stories I've heard.
I will say there is some truth to this statement "feels like colitis all over again" because of the frequency. I had about 10 bowel movements yesterday, which is an erie reminder of colits but I expect the number of BM's to diminish over time.

My main motivation to get through this last surgery was my daughter's birthday which is today. Her birthday present was me coming home from the hospital. Happy B-day Bella!

jblue, hang in there!

Post Edited (mikeman) : 10/24/2009 1:03:10 PM (GMT-6)


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/24/2009 2:09 PM (GMT -6)   
Woo Hoo Mike - I had my reversal 3 weeks 4 days ago and I am finally starting to feel somewhat "normal" It is wonderful that your recovery is so fast! Like you, I am still reaching for my bag once in a while. I had my bag for 2 years and it just became a part of my body. Now that it's gone, I realize how easy life is when your one a bag. No running to the bathroom, no sore backside, no pulling over at the store, and so on.... Thank you for sharing your experience. I love sucess stories. Please keep us posted on your progess.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


spiderman
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 10/25/2009 3:35 AM (GMT -6)   
"feels like colitis all over again".

I do wish people would not say this, it was so off putting for me when I was debating surgery. Besides the initial high frequency it is absolutely nothing like 'colitis again'.

Peter

ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 10/27/2009 7:28 AM (GMT -6)   
well congrats on the speedy recovery! i stay positive most of the time too... my takedown surgery is in a couple weeks, did you have any gas pains people are talking about? i would say the rectal exam i got a few days ago was the worst pain i have had since waking up from the proctocoloectomy...although it only lasted while his finger was in there feelin around... how are you doing now? does the frequency make you not want to eat much?
my name is Isaac, 24 year old guy,Jehovah's witness UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
ALWAYS sick with something either mild or serious, all related to UC and the medication
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred

we will have our new baby boy January 25, 2010 :)


Had first of to surgeres, sept 11, 2009! Had proctocolectomy with temp ielo, i will be med-free! oh and I'm getting laid off, last day of work is march 26, 2010, just enough time...
 
ileostomy takedown scheduled for november 9


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 10/28/2009 3:25 PM (GMT -6)   
day 5 post reversal- definitely not experiencing a fast recovery AT ALL. The doctors stapled my incision and those are bothering and hurt quite a bit- staples will come out Friday. Really going to the bathroom today-- using Calmoseptine and Balmax. So far so good in that area.

Tired and in pain... but I think that I think it is all normal. Anyone- suggestions for sleeping? I have tried a comfy chair with ottoman, a recliner and sometimes the bed propped up.


MIke- how long to plan to stay out of work? How is the bathroom thing going?
Jackie, 44
Pancolitis, DX October 06
Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- REVERSAL:::::: October 23rd -YEAH!


mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 10/28/2009 10:40 PM (GMT -6)   
ruissarr,

No gas pains at all, I have gas but its nothing out of the ordinary. The rectal exam for me was a piece of cake.I jokingly asked my surgeon if he was looking for gold digging around in there .
Same with the j pouch exam, even with that mysterious liquid shooting straight up my rear end, there was nothing to it.
I'm doing fine now. I had a nearly 2 day butt burn that hurt like hell. It was like battery acid was dripping from my rear end and someone lit a torch to my sphincter. Truly the most painful burn I've ever experienced EVER! mad mad What I did was immediately change my diet to Breads, stopped drinking juice or anything with acid and strictly drinking water. I'm eating fiber crackers and taking a probiotic pill. Some of this sounds counter intuitive but it does work to restore normalcy. I also stopped applying the creams and jumped in the bath or shower right after a bowel movement to put out the butt fires. I just got my butt burns under control today but strangely, I still have a crazy itch like right in the center of my anus. This is when a q tip comes in handy! The frequency does make me eat less. All you really need to do is eat enough to satisfy your hunger and make sure you slowly introduce different foods into your diet with small portions.

jblue,
Its day 6 for me...I took 2 percocet and actually made it into church tonight. Praise God!
It sounds like your stressing too much. Pain leads to stress and vice versa. I would suggest erasing your thoughts and starting fresh- with a focus on no pain beginning tomorrow morning.
when you feel an onset of pain ask for more pain medicine then do something you enjoy, for example listening to music, surfing the net, etc;.. while keeping a sense of humor about everything.

You're talking to an insomniac of 7 years lol. Being that you're stuck in the hospital its hard to suggest anything that will help you sleep better since you have nurses and staff entering your room at all hours of the day/night. I would recommend purchasing a memory foam mattress and a sound machine that you could use during and after your hospital stay. I crank up my sound machine to the sound of ocean waves because I find this to be the most relaxing sound on earth. The mattress was a gift from my sister, its like a cloud of heaven for me and contours to my back.
If you cant sleep because of pain then I would suggest asking for more pain medicine and going for walks in between laying on your back catching some sleep in between. My incision is healing very nicely and today I took a nap on my stomach because it doesn't hurt at all anymore.
I don't plan on going back to work for another 10 days or so but that all depends on my 'work from home' approval. If they let me work from home then it will make this whole recovery that much easier, hopefully they will approve my 6 week request. My bowel movements are still around 10-12 a day but I've discovered that eating a couple of fiber crackers and taking probiotics helps with butt burn and makes going to bathroom much easier.

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 10/29/2009 2:02 AM (GMT -6)   
Good advice - thanks.

Actually I am home. I got home Monday evening. So that is a plus. I am up now ( 4:00 am) but feeling a little better.

Thanks for the suggestions. You are right, I am stressing too much. I have to try to relax and let this take its course.

best to you-
Jackie, 44
Pancolitis, DX October 06
Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- REVERSAL:::::: October 23rd -YEAH!


JingleBell
Regular Member


Date Joined Oct 2008
Total Posts : 80
   Posted 10/29/2009 8:11 AM (GMT -6)   
Mikeman,
I have been reading through your post and you have some really good suggestions. I have my take-down on Monday and I was wondering if there was anything that you found invaluable to have both in hospital and at home. Obviously some kind of butt cream but let me know if there is anything else you found handy.
Thanks!
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 10/29/2009 1:38 PM (GMT -6)   
Good Luck Jingle Bell-
Jackie, 44
Pancolitis, DX October 06
Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- REVERSAL:::::: October 23rd -YEAH!


mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 10/29/2009 5:32 PM (GMT -6)   
jinglebell, other than what was mentioned, I can't think of any tangible items that would come in handy.
I totally recommend someone be there to help you! My wife was the most valuable person in supporting me and coming to my aid when needed. blush

mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 12/4/2009 1:48 AM (GMT -6)   
ok so rather than start new thread i figured i would just update here...today i had to get a 1 inch deep abscess drained just to the left of my anus. GottA LOVE LIDOCAINE!!!this sucker was painful but boy what a relief to have the doctor lance the abscess it was immediately feeling better on my bottom. What i need to do to keep it clean is swab out the incision twice a day and try my hardest not to reinfect the wound by wiping or squirting umm matter on it. I am using 2 gauzes and removing them and reapplying them during bathroom visits.

the good news is im about 7 weeks out from take down and this is the only minor complication i had. not bad at all, the bowel movements are down to only 4 - 6 a day. my closure site wound is completely healed and what looks to be minimal scarring that will fade away in about a year.
im very happy with my decision to have a j pouch cool

Post Edited (mikeman) : 12/4/2009 12:52:24 AM (GMT-7)


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 12/4/2009 7:55 AM (GMT -6)   
Mikeman...how wonderful for you that things have gone as well or better than expected!...what a great Christmas you are going to have!

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 12/4/2009 11:02 AM (GMT -6)   
My update - Mikeman- since we had surgery within 24 hours of each other ( 10/23)

I feel so much better- no unusual problems- going to b-room about 6-8 times and once at night. No leaking or anything like that and eating almost everything I used to- I sometimes take an imodium or gas-x to help with those things. No butt burn just minor irritation.


If I go to the bathroom too much consequently I do get butt pain or pressure. The doctor says that is normal irritation and should get better...\\
Jackie, 44
Pancolitis, DX October 06
Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- REVERSAL:::::: October 23rd -YEAH!


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 12/4/2009 3:51 PM (GMT -6)   
Hi Mike, So glad everything went well for you hoping i go the same way!!!!!!!! good luck for the future get out there and enjoy your life! now love to hear a happy story Bev x smilewinkgrin
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)


damagedgoods41
Regular Member


Date Joined Sep 2009
Total Posts : 377
   Posted 12/4/2009 11:03 PM (GMT -6)   
Hello Mike,
 
I just had a read of ur posts and ur story is very insparational!!!!!
I hope you continue to recover as well as you have been. Keep up with the great attitude. Thankyou for sharing ur story.
 
sincerly,
 
damagedgoods41........cool cool cool cool
dx bowel cr 2001. permanent ileostomy.
sub-total colectomy 2001,went wrong.
total colectomy 2001,left swab inside,infected,emergency surgery,blood transfusion.
complication 2001,bowel abcess,surgery.
Infection at lap site,another surgery.
Complication's 2001,bowel heamorage,blood transfusion.
Spent 12mths at Cabrini Hospital.
dx 1993 endometriosis chronic.
27 yrs, hysterectomy.
2mths later, bi-lat ophrectomy,removal of both ovaries.
dx 2005,bi-lateral mastectomy,heart attack on operating table,contracted MRSA in Coronary Care Unit.
Picc Line for 6mths for venus access & daily antibiotics.
dx 2009, parastomal hernia,march 09 hernia repair & re-fashioning of stoma.
dx 2009, complications abcess & peritontise,
emergency surgery,icu 5 day's.
dx 1995, chronic depression,o.c.d. & bi-polar11.
Currently taking Avanza,seroquel,valium,asprin & HRT.  I get depressed reading this!!!!!!!!!!!!!!!!!!!!
 

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