Requesting advice about surgery

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MusicKYS
New Member


Date Joined Mar 2011
Total Posts : 8
   Posted 3/24/2011 11:10 PM (GMT -6)   
This message will be my first post, though I've been reading the posts on here for months. I have had UC for the past 6 years and after the typical struggle that UC'ers face, I've decided to do the J-Pouch surgery. I'm scheduled for the first one in June and am just trying to stay as healthy as I can until then. I have never met anyone with either Crohns or UC, so I have never had the opportunity to talk to anyone about the surgery or the disease, etc. I like my surgeon (I will be having it at UNC-Chapel Hill), and I am confident that the surgery will go as well as it can. I'm not sure what to expect. Can anyone provide some advice? Particularly anything that surprised you...info that they wished they had known before their surgeries.

What is recovery like? How much weight did you lose post surgery? How long until you feel better? And this is a silly question, but do you miss your colon? Can you feel that it's gone? Is your abdomen smaller after the surgery? I know that's a strange question, but I've done a lot of yoga, and I'm worried that I will be weirdly aware of my colon's absence:):)

Thanks for your posts throughout the past few months; I'm grateful to have found this forum.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/25/2011 4:47 AM (GMT -6)   
Hi and welcome!
I have a permanent ileo so I can't fully speak for the j-pouch, but I'll answer what I can.

When I had my surgery I was on 60 mg of pred, I was 92 lbs (5'6), and I had eaten nothing for 2 weeks. I was SICK! But I pulled through just fine. No complications. I went back to work (dancing at Disney World) 5 weeks later. If I had been at a desk job I probably could have gone back at 3-4 weeks. I didn't lose weight at all post-surgery. I gained 20 lbs in those 5 weeks. I felt better pretty much immediately after surgery because I was so sick.

I SURE DON'T MISS MY COLON!!!! It was horrible and made my life hell. I can't feel that it's gone and my abdomen is the same size. As a dancer I thought I'd notice a difference but I don't.

I hope this helps!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 3/25/2011 6:04 AM (GMT -6)   
I haven't had my reversal, but I can answer what I have experienced so far.

I have lost 20 pounds since surgery...much needed. I had gained about 35 since using prednisone and have lost 30 pounds sine I've been off of it. I look to see if I can notice it's not there, but can't tell. Just know it's not there because I feel better.

I went back to work part-time after 6 weeks.

I am glad you are confident in your surgeon you need to have one that does a lot of j-pouch surgeries every year because it is such a complex surgery. I think a lot of the problems people have stems from having surgeons who only do a few a year. Mine does them almost weekly.

My only surprise was how hard of a time I had getting used to the temp illeostomy. So many different sizes, brands and types. I now have no issues just in time for my reversal.

Walk, walk, walk. It will help you get better faster. It took me about 6 weeks to feel like myself again.

Pain can be controlled with meds so don't worry about pain.

Good luck and keep us updated!!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/25/2011 6:59 AM (GMT -6)   
I had a permanent ileo four weeks ago, and I don't miss my colon -- thought I would, but I don't. I had one night where I was vomiting from the pain meds and I kept feeling like I needed to have diarrhea and couldn't .... that was the only night so far that I had any doubts (and that was some weird phantom thing, as diarrhea would not have been a substitute for the vomiting).

I have had a few days where my guts are rumbly and I instinctively go to massage where my colon was and then it's not there. I don't yet know how to interpret my new configuration when something feels off.

My surgeon took a picture of my colon and showed it to me (I have a post on that).... I recommend that..... when I saw how awful it looked, it made me miss it even less.... just was too diseased to function. I think of it that my other organs got together and voted my colon off the island.....

I was surprised by how absolutely weak I was for the day or two after surgery ... had an epidural that made my legs numb and I couldn't turn over without help. There also are a lot of tubes coming out -- the catheter for urine and the JP pouch for wound drainage.... but I got a lot better quickly from those. I agree with disneynut, walk, walk, walk....... it's really hard at first, but helps a lot.

Good luck

Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 3/25/2011 7:59 AM (GMT -6)   
I had the three-step surgery and had my takedown in mid-December. I would normally lose maybe 5-7 pounds after each surgery, mainly because I wasn't eating that much but then I would put it back on once I started eating normally again. I think I read somewhere the colon weighs close to four pounds??? So, I should be four pounds lighter - but that's not the case :-). You won't physically "miss" your colon. I work out frequently but because I've been taking it easy on the abdominal exercises, my stomach is still pretty flabby. My recoveries weren't that bad. There is an adjustment after each surgery, for sure. The bag takes a while to get used to and I'm still getting used to the j-pouch. In the beginning, you'll have to go to the bathroom a lot - and those urges will remind you of your UC days. I still get those - though not nearly as often - but they pass. I just have that uncomfortable feeling for a few seconds. Hoping over time those end as well. I definitely feel better now then when I was flaring. I would rather have a healthy colon than a j-pouch but it has given me a life back. Good luck!

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 3/25/2011 1:48 PM (GMT -6)   
Hi, I'm getting the three step j-pouch surgery and I've only had the first step so far, so I'm no expert yet. But I can answer a few of your questions.

What is recovery like? - It didn't hurt as much as I expected. Pain meds kept me quite comfortable. The most annoying thing for me was feeling slightly nauseous when I ate, at first. It took a long time for my appetite to return. When I would start to feel nauseous, walking around felt like the last thing I wanted to do, but it actually helped. It helped get trapped gas out, which had been causing part of the discomfort.

How much weight did you lose post surgery? - about seven pounds, mostly due to the appetite issues I just mentioned. I'm very skinny so I hated to see the weight go! But once I was home from the hospital and eating normally, it started to slowly come back on. Now I'm two to three pounds heavier than I was when I first came home.

How long until you feel better? - I felt pretty comfortable and capable of moving around without difficulty within about a week. At about six weeks I decided I felt normal.

Can you feel that your colon is gone? - Haha, I worried about this too! I can't tell at all, now, BUT for the first few weeks after surgery, every time I made a drastic movement (Like going from lying down to sitting up and vice versa) I could feel what I can only describe as my guts flopping around inside me. It was a pretty vile feeling. Nurses told me it was normal - everything has to kind of settle down and fill in the spaces - but I don't know how common it is. It went away completely after a little while, though.

Good luck to you!
Diagnosed with UC in 2007
Flare in 2007 causing anemia requiring blood transfusions, eventually controlled by asacol and 6-MP.
Flared again in 2009 as 6-MP lost effectiveness, went on TPN and received more blood. Started Remicade, which induced remission.
Flared 2010; Remicade no longer effective.
Had 1st surgery of 3 step j-pouch at CC on 1/19/11. 2nd slated for April, and j-pouch in July!

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 3/25/2011 9:00 PM (GMT -6)   
What is recovery like?
I was back to work at eight weeks, but not fully healed until four months because my incision kept opening back up due to a poor reaction to the suture material in my abdominal wall. Once this was fixed though, I healed pretty quickly with the help of a wound vac.


How much weight did you lose post surgery?
I am 5'8 and lost 25 pounds (20% of my body weight) in the hospital due to a UC flare in September. I managed to put 15 pounds back on before my surgery in November. That is where I have stayed since... so I haven't lost any but haven't gained any either. I don't worry about it though because I feel really strong and healthy.

How long until you feel better?
Even though I had surgical pain, I felt immediately better after surgery. Now that I am about 5 months post-op, I feel better than I have in about 6 years. I have sooo much energy and just feel revitalized in general.

And this is a silly question, but do you miss your colon?
I don't miss it at all. It hurt and bled all the time and I am glad my body isn't constantly wasting energy trying to heal it.

Can you feel that it's gone?
Right after surgery, things felt like they were sloshing around in my belly. When I would roll over in bed I swear I could feel everything flop to the other side. I asked my surgeon about it and he said it was quite possible that things were moving around a bit due to the extra space, but that it should go away once things settled. It has, though I still wonder if when I start up jogging again things are going to slosh around:)

Is your abdomen smaller after the surgery?
I wouldn't say it is smaller, but I used to get really bloated with UC and looked like I was 6 months pregnant sometimes. That has gone away and my stomach is nice and flat now.

I know that's a strange question, but I've done a lot of yoga, and I'm worried that I will be weirdly aware of my colon's absence:):)
Again, I think you will get used to its absence once everything settles. So far I haven't noticed anything weird, though I haven't started up most of my sports quite yet.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/25/2011 9:16 PM (GMT -6)   
Do you live near Chapel Hill? i had my surgery at Charlotte, Presby downtown, I'm near Hickory, we are sort of neighbors, lol.

Anyway (i have a perm ileo, so it's a little different)
recovery is not fun, im not gonna lie to you, its hard and it hurts at first, but its soooo worth it! As soon as i woke up i could tell that disease was GONE.
i lost weight right away, but put it on FAST, i was like food food food! then i had to exercise and take it back off again, lol.
Do i miss my colon? heck no! I was at the girlie dr today and she asked me about it and i said, well it wasn't doing me any good in there, and i didn't need, so i said, take it out! and i'm so much better now!
My stomach isn't smaller, the colon doesn't weigh much empty, so it doesnt' really matter, and the stuff does settle around,, it is funny sometimes because gas and gurglies are down lower than i think they should be sometimes.
anyway, bottom line, your disease will be GONE your pain will be GONE your sickness, the days of worrying where is the bathroom? can i eat that? will i be sick? all GONE, so its sooo worth it!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/26/2011 5:36 AM (GMT -6)   
Things do move around in the early days, but it doesn't hurt just feels weird! I don't miss my colon and I don't feel any different without it...I do have a permanent ileostomy, not a j-pouch. I wish I could say you loose weight when they take it out, but you don't!

How many steps will your surgery be? What meds are you on right now?

Welcome to the forum, too, I am glad you found us...any I bet you have met people with UC/Crohn's but most don't talk about it!!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/7/2011 1:18 PM (GMT -6)   
hey, I found out on the 25th of march that i am getting surgery in june at Duke in durham. Just interesting we are in the same boat waiting for that day to come and getting it done so close together.
DX 2/10 UP. DX 10/10 UC. Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, Vicodin, Xanax, Imodium, tramadol. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine/codeine, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

MusicKYS
New Member


Date Joined Mar 2011
Total Posts : 8
   Posted 4/7/2011 9:38 PM (GMT -6)   
That is interesting. We should keep in touch..update each other. Are you doing a J-pouch? Do you have to do it in 2 steps? What are you doing until then? I've been trying to meditate and walk and exercise (though, I haven't started doing any). Part of me just wants the day to be here...and isn't it funny, I've started feeling better.
UC since 2004. Tried Sulfasalazine, Mesalimine, Imuran, Remicade, and my dear frenemie, Prednisone
After living 2 years "holistically", with no improvement and resulting in a blood transfusion after a 4.5 hemoglobin level, I decided on surgery.
Currently staying not so steady on 25 mg of Prednisone waiting for my J pouch surgery in June 2011

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/8/2011 3:48 AM (GMT -6)   
Yep, they are willing to do a j pouch despite my diagnosis of crohns colitis! I've been sick since July so they may have to do 3 steps but won't know until they get in there and look. I sure hope they do 2, I really wanted one step but at this point I just want any surgery soon!
What am I doing till then? Hoping I make it that long! lol. I wish I had the energy to exercise! I wish prednisone did something for me to keep me going, but no it doesn't! I'm just suffering till june :(
What day is your surgery? Mine is scheduled June 8th. I am travelling to Duke from Roanoke, VA (3 hours) Do you live in NC? What made you choose UNC over Duke? I hope both of our surgeries are great successes!
I can't believe you are feeling better, gosh what if you get into remission waiting for surgery, that would be crazy! What would you do??
we should definitely keep in touch! Are you on j-pouch.org? My name on there is JenniferG...
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, codeine, Xanax, Imodium. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine, Vicodin, tramadol, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/8/2011 6:59 AM (GMT -6)   
First of all Good Luck. Let us all know how you're doing after the surgery and you are up to it.

Insofar as "feeling better" when my husband made the decision locally in June and due to various logistics with Mayo Clinic, a prostate issue, the surgery was set for mid December. A certain feeling of peace and acceptance I think makes the entire situation a bit different even though he didn't really feel better physically but emotionally he did.

As a precursor to June his pain meds (on pain management) needed to be increased which also played into the decision for surgery.

We are in a bit of a learning curve at the moment but honestly he has not regretted it for one minute the choice to have the surgery. To be out of pain, not living in our bathroom and always needing to know there was a men's room nearby etc. has given him so much freedom now. He is back in control now instead of the UC controlling him and life is one heck of a lot better now without a doubt.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

MusicKYS
New Member


Date Joined Mar 2011
Total Posts : 8
   Posted 4/8/2011 7:02 AM (GMT -6)   
Hey Jennifer,

I'm sorry that you're in such bad shape. I felt that way in January, but the prednisone kicked in it seemed after a few months? (does prednisone work that way) and is keeping me going, if you can say that. I don't really feel like exercising, but I think that i could walk around the block a few times. haha...we'll see if that happens.
My surgery is the 9th, a Thursday. The way they do it at UNC is you get a Colonoscopy the day before, on Wednesday, and then you're already prepped for the surgery. I just think that I'm going to be really hungry, grouchy, and nervous Wednesday night:) We'll see. I live in Eastern NC, so UNC is about a 2 hour drive for me. I chose UNC because my GI in Greenville knew the GI and surgeons at UNC..that's the only reason. I liked it when I visited though...the GI sat with me and took my history for over an hour! I was really impressed with that, and the surgeon was honest, and I liked his manner. He does a ton of J pouch surgeries too.
I doubt I'll go into remission, but I've thought that too. I feel so less anxious than I normally do because I know surgery is coming, and I think that attitude is helping. I also normally feel better around this time of the year....I think my UC is a little seasonal. I would still have the surgery, I think.
Do you want to exchange emails? Is that okay to do on this site? I'm not on j-pouch.org...
Kirsten
UC since 2004. Tried Sulfasalazine, Mesalimine, Imuran, Remicade, and my dear frenemie, Prednisone
After living 2 years "holistically", with no improvement and resulting in a blood transfusion after a 4.5 hemoglobin level, I decided on surgery.
Currently staying not so steady on 25 mg of Prednisone waiting for my J pouch surgery in June 2011

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4540
   Posted 4/8/2011 10:07 AM (GMT -6)   
To answer some of your questions, the only thing that surprised me after surgery is that I developed an abcess in my pelvic area about a week afterwards. I guess I shouldn't have been surprised...they do warn you about infection as a complication. I had to have a transgluteal drain (a tube thru my butt cheek) put in to drain the abcess. Problem was it had to stay in for 6 weeks! Looking back on it now, it really wasn't that bad. I just wasn't prepared for any complications. Everything else went really well and the surgery has been a huge success for me. I would do it all over again in a heartbeat.
 
No, I do not miss my diseased colon at all! You won't feel it's gone. I have to say my stomache has an odd shape now....kind of hard to explain. It's not flat anymore. But that's a small price to pay not to be sick anymore! :-) I lost about 20 pounds after surgery(s) but I have since gained back 12. I love my weight right now so I am trying to maintain it.
 
Best wishes to you!
 
 
 
 
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy)6-25-10
Step 2: Take down surgery (Ileostomy reversal)10/8/10
Very pleased with my results

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/8/2011 10:33 AM (GMT -6)   
OMG, I so don't want a drain in my butt cheek for 6 weeks EEK! Ugh! I am so nervous about complications! My surgeon said I had like a 50% chance of infection because I was on Remicade. I don't like those odds...

Kirsten, I think prednisone works pretty quickly for most but it can take awhile for some people. My GI kept me on it for two months thinking "it will eventually kick in" but it never did. I am glad it works for you and you are feeling somewhat better! You will be healthier going in to surgery and that is a very good thing! (although pred use before surgery can increase odds but probably not as bad as remicade) when were you on remi?
I couldn't imagine walking around the block without a bathroom! :)
I can't believe they are making you do a colonoscopy before cutting it out!?
What for? That is one thing I am thankful of: they don't even want me to do a prep because they don't want me to get dehydrated :D I HATE PREPS!
Yes, wednesday will be a rough day for you... I'd pray for you but I might be unconscious! Good luck! Remember it's only one day.
I used to live in Wilson, NC. Know where that is? Are you going home right after surgery? I am staying in a hotel for 2 weeks just in case complications arise.
Email, Sure! Mine is Deputydog77@msn.com. Make sure the subject says who you are the first time so you don't go in junk email, ok?
Jennifer
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, codeine, Xanax, Imodium. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine, Vicodin, tramadol, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/8/2011 11:17 AM (GMT -6)   
hey its the last prep you ever have to do!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

MusicKYS
New Member


Date Joined Mar 2011
Total Posts : 8
   Posted 4/8/2011 1:12 PM (GMT -6)   
oh i know. I'm fine with the prep! I hope I don't get an abcess and need a drain, but I supposed I'll handle that if it happens. I'm not thinking about any complications...but if I need a drain through my butt cheek, I'll be in touch:) haha Jennifer...I'll shoot you an email. I'm from Greenville, NC, so I definitely know where Wilson is!
Thanks for all of the input, everyone! I'm so happy to have a community to go to with questions. It's really amazing!
UC since 2004. Tried Sulfasalazine, Mesalimine, Imuran, Remicade, and my dear frenemie, Prednisone
After living 2 years "holistically", with no improvement and resulting in a blood transfusion after a 4.5 hemoglobin level, I decided on surgery.
Currently staying not so steady on 25 mg of Prednisone waiting for my J pouch surgery in June 2011

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4540
   Posted 4/8/2011 1:42 PM (GMT -6)   
Sorry...I didn't want to scare anyone with the abcess and drain thing! But it's always good to be aware of these things. I kind of wish I knew about the complications first hand before surgery because when I was going thru it I felt really alone...like I was the only one to have complications. I wish I found these forums before my surgery to comiserate with folks in the same boat. I didn't find the forums until after surgery when I was sitting around re-cooping. It's so nice to know you are not alone.

Bottom line is don't worry about things and go in with a positive attitude. I really believe that helps so much! Even with the complications, the surgery is so worth it!
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy)6-25-10
Step 2: Take down surgery (Ileostomy reversal)10/8/10
Very pleased with my results

Post Edited (ByeByeUC) : 4/8/2011 1:46:10 PM (GMT-6)


Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 4/8/2011 7:15 PM (GMT -6)   
I had to get the drain through my butt cheek too. I had stomach pains and a slight fever 5 weeks after surgery, so they did a CT scan and saw a fluid area in my belly. They couldn't really tell if it was an abscess, but it needed to be drained to tell for sure. I ended up only having the drain for 5 days as the fluid turned out not to be infected and also subsided fairly quickly. They never really were able to tell me what cause the fluid, but oh well. I felt better once it was gone. They figured the fever was a separate issue from a tiny infection I had in my abdominal incision, which I was having problems with at the same time. I was glad I didn't have to have the drain in for long since it was large and cumbersome to have hanging there, but I did end up having some complications and an abscess in my abdominal incision at around 10 weeks due to a delayed reaction to the dissolvable sutures in my muscle wall. Once I had another surgery to clean this out and fix the issue, I had to have a wound vac suctioned to my belly for 6 weeks.

Honestly though, these complications seemed bad when I was in the middle of them, but once I was healed, it really seems like the bad times went by so fast. Now I feel absolutely amazing at exactly 5 months (I just realized it is the anniversary of my surgery!), and it was all worth it. When I was going through the hard moments, my hubby always reminded me that even with the setbacks, my body was heading in the direction of healing all the time. Though I definitely had a lot of low points, I also was so glad that at least everything went wonderfully with the ileostomy portion of my surgery.... no major skin issues (yet anyway), perfectly functioning stoma, no leaks from my appliance. Since mine is permanent, this is huge!
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

MusicKYS
New Member


Date Joined Mar 2011
Total Posts : 8
   Posted 4/8/2011 9:51 PM (GMT -6)   
I'm happy that you're feeling so well 5 months post surgery! I'm sure that I'll face whatever comes, as I have before. It's a different ball game with infection and fever, however...I'll just remind myself what your husband told you...my body is just trying to heal.
I'll keep you all posted...thanks for sharing your experiences.
UC since 2004. Tried Sulfasalazine, Mesalimine, Imuran, Remicade, and my dear frenemie, Prednisone
After living 2 years "holistically", with no improvement and resulting in a blood transfusion after a 4.5 hemoglobin level, I decided on surgery.
Currently staying not so steady on 25 mg of Prednisone waiting for my J pouch surgery in June 2011

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/9/2011 10:46 AM (GMT -6)   
Ditto.. the butt cheeks and drains for those few days were more uncomfortable than the incision actually. When the tube came out of the nose that was the very first "halleluiah" moment and when the drains followed everything was a lot easier. The pain meds help however to keep you more comfortable when you have that discomfort.

Up walking right away is important...sitting up he used a nice soft pillow in the recliner chair in the hospital. His ostomy nurse got him an inflatable egg crate type pillow with a bunch of holes in it to make sitting more comfortable which we took home with us as it was charged to the hospital bill.

I would adjust his pillows for him in the bed to help cushion certain areas and help take the weight and strain off areas that were sore like his right shoulder in particular and right hip those first few days.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/9/2011 12:55 PM (GMT -6)   
where in your butt cheek is this drain? How do you sit? I just can't imagine it! I have a big ol butt cheek, seems like a lot to go through to drain the stomach? lol
I'm so paranoid!
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, codeine, Xanax, Imodium. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine, Vicodin, tramadol, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4540
   Posted 4/9/2011 1:23 PM (GMT -6)   
Well if you must know.... shocked   It was in my upper left butt cheek. Oh yeah, sitting was real fun. My poor back was out of whack afterwards from leaning on my right butt cheek all the time. This kind of drain was the most direct route to where my abcess was sitting in my pelvic area. I blame the infection on the fact that I was really sick going into surgery...totally run down. Try to get as healthy as you possibly can before surgery. Easier said than done, right?!
 
Don't fret about it....it's not likely that it will happen to you! :-)
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy)6-25-10
Step 2: Take down surgery (Ileostomy reversal)10/8/10
Very pleased with my results

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/9/2011 6:29 PM (GMT -6)   
Am I getting confused....were the drains in the butt cheeks due to my husband's anus and rectum being removed and everything sewn up internally and externally and those drains were for that purpose???

The tube in the nose goes to the stomach correct? He was on liguids in a couple of days, then very soft food and with the stoma working well the tube in the nose was taken out and he was very happy about that and then the butt drains were not long after that.

His back was thrown out of whack as well due to lying and sitting in an awkward position even after the drains were removed as it was tender and sore. Soft pillows and that inflatable egg crate pillow (called a waffle cushion) really helped. Once he was able to sit more normally it got better but the back was definitely weak and took awhile for his to straighten out. He was careful to be sure it didn't actually go out on him but it was weak.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.
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