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this is my second takedown and so far its okay. my catheter was removed before i woke up which is always nice and i peed later last night putting at ease the idea i would have to have it reinserted. the surgery was on 1/26 at 8am and about 45 minutes ago i had first release from back end. i call it a release because i didnt feel like i needed to go. wasnt very much straining required either. it was all blood but im guessing that is to be expected? the nurse said she would imagine there would be some. i made the mistake of flushing though when they wanted to go in and see. im sure it will be like that again next time. only time i have pain at the old ostomy site is when i get up to go to the bathroom. aside from that if im laying here for awhile it feels fine. i had a nerve block to though, should mention that. i believe we will start some walking today. i am just TERRIFIED that will have an accident out there in the hallway!! i have been doing the kegel exercises prior to today for awhile. not religiously and probably not as much as i should have but im hoping that will help with some of that sudden onset of clenching that can happen. i remember those all to well. i have my laptop here with me (obviously) so i will update here as i go along.  awesome we can upload pictures now?! nice!

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update *** bowels woke up at 3am Wednesday morning. it was rough. calmed down a little bit between then and now (Thursday about 9am). they did do an xray early wed and found my bowels woke up a little bit but not all the way, something about my intestines or stomach was dilated still. i was just put on clear liquids. had veggie broth, jello, and apple juice. they also gave me coffee and grape juice on the same tray and i cant help but laugh at the idea of drinking that. since back when i needed to clear things i would drink grape juice. i am hoping and WISHING that for dinner or maybe even lunch i can have soft foods like yogurt or mashed potatoes something a bit morhe filling. 

phonix, 

i had my pouch put on hold because i was going to the bathroom so often and seemed like i was in the ER every other weekend for a blockage. when they put me in surgery they found my small intestine had fallen and wrapped around my jpouch. she opted to give me the ostomy at the time only because  had asked for it prior to surgery. i was just tired of the constant issues. i wanted to try it out again after my surgeon felt she resolved my issues.

update** i was put on regular diet today after tolerating clear fluid for morning time. had a pancake and strawberry yogurt for lunch, about to order dinner now. only issues i seem to that be having is that when i go to the bathroom now it doesnt seem to be a whole lot that i am passing. they also had me drink some wellcall stuff...dont know what it was but she said it should help to slow my bowel. i wanted to go home tomorrow but it looks like they are shooting for Saturday at some point. they want my bathroom visits down more. have alot of gas going on with all this as well. 

I believe what they gave you was Welchol, which is a drug that binds with the bile in your gut. The primary purpose is to lower cholesterol by preventing reabsorption of cholesterol that is in bile. A happy side effect for us is constipation. It can also help prevent bile irritation from frequent stools.

 

http://www.welchol.com/how-wel...-tract-not-liver.htm

 

Glad things are progressing well!

 

Jan

 

Jan thats exactly what it is. i was worried that it is stopping me up, is that possible? 

 

update*** this is day 4 and i feel really bloated, my bathroom trips have decreased due to pain meds and this stuff called welchol (maybe), jan explains it above this post. Stomach hurts, my bottom hurts from rawness and general pressure is there. Spoke to doctors this mornining and they all (about 4 different ones) say im on the right track and they are not concerned. just find it so weird my body is basically telling me its unwell but the doctors say yeah but this is normal. which i realize after reading multitude stories from others and having gone through takedown once before it will take adjusting and things will be changing all the time.  I was concerned about it all so i asked the doctors for an Xray and she did send me down for my 2nd one. the first one was two days ago so they can at least compare it to that and ease my fears  a bit. waiting on those answers now. the xray tech said right off the bat that there was a small sliver of air in the top of the bowel and that it seemed smaller than the one from the other day but then he doubled back on that answer with some things i didnt understand and said my doctors will be able to explain it to me. 

This surgery is hard. your head needs to be in it and your body needs to be ready for this. 

update ***  i was under the assumption i was going to be able to go home today, but i have been having pain whenever i pass stool. it feels like its only in the anal area, not necessarily in the pouch or anything, next bathroom trip im going to pay closer attention but its because of this pain that she is keeping me another day and trying a few different medications, not sure if they are all at once or at a time but its bentyl, BO suppository, and something else, cant remember, the BO suppository has some opium in it she said but that was really all. I'm pretty upset about not being able to go home but i guess it makes sense that if there is an issue im in a better place now to have it looked at vs going home and calling or emailing it in. 

more on that pain im feeling though, when i go to the bathroom and im passing stool its like im pushing but its not in my control. its doing it on its own and its painful, sometimes im gripping handrail or clenching teeth. 

You may be developing a fissure and some spasming, so it is good that they are right on top of that. You don't want to go home and have everything go sideways. The B&O suppositories contain both belladonna and opium (not sure why she said it was only opium). The belladonna has the same action as Bentyl, but is more localized. I think the topical approach is best, as the Bentyl can make you pretty loopy. If you can, try to reduce the pain meds as much as you can, as they slow the gut.

 

And of course, keep walking and drink plenty of fluids. Don't be in too big of a hurry to go home.

 

Jan

Thank you jan. How long should I try to hold the suppository and should it be used after my next BM so it has time to get in the system? They just brought in new mess I took which was a bentyl, lactobacillus, and could have given me the supp but I want to find the best time to take that one right now.
Any chance that could make me incontinent?

The pain and discomfort you've described is very similar to what I've experience.

Not long after my takedown, during a BM, the pain and burning sensation was excruciating; my anus was dilating by its self whilst I sat on the pan due to the urge to pass what felt like a golf ball.

There was no blockage or golf ball, my symptoms was due to loose BM and excessive bile acid not completely evacuating from the anal canal, burning and eroding the internal lining and creating the pain.

My Doctor explained that due to the pain and discomfort the natural reaction is the urge to push and open the bowel but by doing so the anus dilates, which prevents complete evacuation.

Due to the pain and discomfort I lost my appetite, so my BM were reduced; the Loperamide was increased too.

Due to the reduced BM, I was able to apply ilex protectant paste more effectively, applying a little to inside of the anus, this made all the difference and by the next day the pain and discomfort was so much more bearable.

Last edited by Former Member
Most of the lining of anal canal can withstand the bile acid and as the output thickens, I guess the effect of the acid is less.

However, just slightly inside the anus where the two skin types meet, that's the area that burns as normal external wiping fails to reach.

All I did was apply the ilex to my anus using my finger, allowing the tip of my finger with paste applied to slightly enter the inside.

Due to my lost of appeitite and the double dose of Loperamide, my BM's had stopped, literally 6 hours apart. I believe this rest period gave the ilex time to do its magic.

Prior to this, my BM's were very frequent and very loose, stung all time, feeling like I'd not finished.
No sooner had I wiped, cleand and applied the ilex, I was  retuning again with this uncrontrollabl urge to push, sitting on the pan for ages.

It was a very unusual sensation, not very pleasant and the pain was excruciating.
I spoke to the GI resident on duty and she thinks like my surgeon that this could resolve on its own. Every single person around me is feeding me the same line that " well you haven't use the bathroom that way in 6 months so your body needs to become accustomed again" I'm calling BS. The pain is so bad I'm afraid to go in there. I showed my surgeons resident your post strange and she is going to bring it up to my surgeon the morning. I just don't see how their default answer is "  it could get better on its own let's see "

Not only was my pain so uncomfortable I think my loss of appetite was partly due to my fear of BM's; it was excruciating, I can not emphasise enough how painful and uncomfortable a BM was.

I had no control of the sensation and urge to push and strain once the BM has started, I couldn't stop but push and strain.

Apparently, the straining has a negative effect on pouch evacuation; somehow it causes the anal muscles to tighten, thus preventing complete evacuation.

I was advised to allow gravity and my seated position on the pan to empty the pouch, resisting the urge to strain but to pull my abdominal muscle in to complete evacuation.

Initially I had difficulties using the ilex paste; every so often the pain, itching and discomfort would return, although not as severe; the ilex paste would become very gloopy, sticky and messy between the cheeks, however thanks to Jan from this very forum, I discovered I should not be using wet wipes to cleanse, as doing so partially removes the ilex paste, leaving areas of my skin unprotected.

I experienced a similar situation  after the creation of my loop ileostomy; excruciating pain and the erosion of my skin around the Stoma; it was the use of ilex paste, also recommended by Jan, which eased my pain and within 3 days of applying the paste the skin around my Stoma had completely healed.

Last edited by Former Member

**update**

Was hoping to be able to go home today but no. Surgeon wants me to remain still because of that straining/spasm issue. i was checked for an anal fissure but surgeon said the area is just irritated and red. she believes its pouchitis related and has put me on cipro and flagyl. on my first attempt at the pouch i had these same issues, this uncontrollable urge to push which was for the most part resolved with the same meds so im crossing my fingers it will help again. depressing to be told a 3rd time that they want to keep me another day and i struggle with the idea of being in this position either in the hospital or at home in my own house. i guess its better to stay though if the meds dont work or something different happens. regardless im here for another day. 


Funny moment today..when she went to check for the fissure she pulled my pajama bottoms down as im laying on my right side, shes checking things out and she accidently knocks off this air box machine on the end of my bed and she yells "OH MY!"  i guess it scared her and mind you i didnt hear it fall so i assumed for all of about 4 or 6 seconds that the OH My was in relation to what she found on my rear. 

Funny your symptoms mirror what I experienced yet a different prognosis.

I only has blood test which were clear, so I don't know whether Pouchitis can be detect from a blood test.

However, I had to remain in Hospital for another three days  until I was feeling more comfortable.

After all, they're the experts and being cared for with professionals on hand is better than being at home.
Last edited by Former Member
Originally Posted by strange:
Funny your symptoms mirror what I experienced yet a different prognosis.

I only has blood test which were clear, so I don't know whether Pouchitis can be detect from a blood test.

However, I had to remain in Hospital for another three days  until I was feeling more comfortable.

After, they're are the experts and being cared for with professionals on hand is better than being at home.

 

 

You are correct about the professionals. I just miss home so bad. I dont think a blood test can confirm pouchitis...i would think some sort of scope would be definitive for that. 

**update**

The meds cipro and flagyl seemed to have made a small difference, the straining is not as bad. its still there a bit but def not as bad. maybe it needs more time? regardless i believe i will be able to go home while staying on them. urgency seems to have increased a little but maybe thats because the inflammation is calming down thus im feeling the need to empty it ?? 

**Update**

Was able to be sent home yesterday late afternoon. and thats when new issues started...i had multiple accidents that night, going to the bathroom like clockwork every 30 min barely making it, some of those trips i didnt make it. by morning time i was exhausted and frustrated. my fiance left for work so i sat down and am eating breakfast. this is not the way the first j pouch went so i def was not expecting this. how long can this last? its terrible and i feel embarrassed morally degraded. missing my ostomy terribly as its only problems the last couple weeks were wear times from itching and one minor leak.

the straining seems to have died down a good bit today. Feels like a bad trade...dont know what to do. 

dg, I'm so sorry you're going through this. I remember my takedown four years ago. The first month was ok, and then the s*&t hit the fan for four months - urgency, pain, accidents - until I was put on Cipro. It was pouchitis. Could you have pouchitis? I know the docs often like to let things lie for awhile to let your body adjust, but it's possible there's an issue. I'd put a call into your doctor and see if anything can be done to help. BTW, I've had an ileo for almost four weeks. I have irritation under my eakin ring and am blowing up like a blowfish and find myself missing the freedom of my j-pouch. It's ALL rough. Hang in there. This can't last forever and it won't.

****update*****

After last nights crazyness this morning i took a bentyl 40 minutes before eating, ate 3 eggo waffles, took my cipro, flagyl, robaxin, and neurotin, and here i am 4 hours later have not gone to the bathroom. have a ton of pressure in my bottom but no pain anywhere else. can hear gurgles and all...getting a bit concerned..

**Update**

Today is sorta like yesterday but a bit better, whenever i have the urge to go more comes out then yesterday, perhaps because for breakfast instead of eggo waffles i had oatmeal which on my last go as very pouch friendly, i snacked a bit more today too and ate chik fil a meal (which sorta gave me cramps..fried maybe) i am having a few pains in my stomach area. its not just near my old stoma side it seems to be symmetrical and a bit under my ribs. maybe im using my stomach muscles too much today as i tried doing laundry and noticed when i sit up its 50/50 using arms and stomach, I am now making sure to use stomach muscles less. home health nurse is coming tomorrow to look at the old stoma site and make sure its healing properly and not infected..i dont see why but hospital said something about its just a precaution. 

also something i have not mentioned in the past posts is whenever i stand up and walk around i feel alot of pressure on my bottom to go and i clench and all that jazz as i walk. this problem has gotten better very little each day so i hope it continues to improe, im sure it will. if i put my hand and apply pressure it stops so i must look pretty funny sometimes. 

 

Thank you all for the well wishes! 

 

Strange - This is my second j pouch because the first one had been acting up horribly, first 3-4 months it was going good, but then we kept winding up in the ER because things just stopped working. there was no blockage, after about 10 times of that happening my surgeon wanted to do a temp ostomy for awhile to which i agreed. while she was in there reversing things she found that my small intestines had falled and wrapped themselves around the pouch. she also mentioned the way the scar tissue had formed it had been there awhile and was cutting off blood supply somewhere in my body (which i didnt feel ) she didnt want to give me an ostomy since she found that but only did because i had asked for it. 

***update**
Well late last night I passed a pill. It was perfectly circular and since I have been home I didn't have any pills that are circular, only oblong shaped pills. Hours later another and then another one. I believe they were magnesium pills that I took Sunday in the hospital....how are they passing now? Idk....
my trios are still frequent and the gas is crazy. that's what's making me go so much I'm sure of it. When I get the chance I lay on my stomach and can pass gas when that urge comes along. I pay on my bathroom floor which is not easy because they're small but it's temp relief..till its all out. I think I'll add digestive enzymes to help tomorrow.
Still some straining. Some bad mostly easy but still hoping this improves as well. I'm going through toilet paper like candy so I ordered a hot/cold bidet that arrived today. Will hook it up tomorrow.
Also..I THINK that feeling of all that pressure I feel when I walk has let up a little bit. .... just thinking on it but I think these spur cream and cheddar chips are what caused me so much gas...I was going soooo much yesterday and had chips then too..no chips tomorrow so we will see.



Strange. My j pouch was not recreated just temp disconnected. Each time she has seen my pouch via scope she says how good it looks Which is comforting. If they ever said they want to make a new j pouch I would probably say no and resign myself to a perm ostomy.
***update ***
Passed two more pills today. Has me concerned to have shot off an email to my surgeon. I'll likely hear something tomorrow. a little while before passing the pills my frequency increased then after passing them I can't seem to stay out of the bathroom. can't stay out no more then 6 min it seems. Stool is firm more foamy then anything and VERY urgent. my bottom is sore.  I'm about to eat something now.
***update***

Jan, am I okay to keep updating this? 

Today consistent all the way from waking up to going to bed. It's been hard to go and when I do go there is hardly anything. I have an idea as to why this is and tomorrow I'm going to test it out and see. The pushing is terrible but it's something I can't help. Also have had leg pain all day today that when I step a certain way it sends a shot ting pain down my leg making me stop and yell. urgency is down so is the feeling of my bottom falling out when I walk. Still feel it a tad but Def better. Fingers crossed tomorrow is going to be my sudden turn around for change day.

**update**

I think i missed a day...couldnt find my post either had to dig.

Things are "okay" Urgency has gone down a bit more again, when  i need to go i still have to get there, its when im in there thats the problem, currently im only going very little, i suspect its my food intake, maybe im not eating enough food with enough residue so to speak. plus i also think its to firm. i mentioned this to my surgeons resident today who called me....she said she would call me back but never did.. perhaps she thinks im okay till wednesday 2/9/15 when i go there to check in with surgeon. i think things are too firm because when i go to the bathroom as soon as i sit its lower in my rectum that i feel pushing, different from the spasms before..maybe i will start the bentyl again but man it hurts sometimes. i cry out sometimes. i think i should have explained it all better to my surgeons resident. no blood either after the pushing, sometimes after a nights sleep (which i dont sleep through the night) morning time sometimes theres a smidge of blood and sometimes its just reddish orange tint. 

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