1 Week post-takedown. Feeling really discouraged.

Does it help to know that you are in very good company? Probably not, but I've read your complaint (or something similar) probably a thousand times or more. Yes, the adaptation period can be a very trying time. However, the vast majority of us get to a place where function is good and we are not constantly thinking about the next trip to the toilet or what is going on with our butts.

It does sound like you may have a fissure from your dilation, so talk to your doc about treatment. In the mean time, warm sitz baths several times a day should help.

Look for noticeable improvement by the 3 month mark.

Jan

I can only talk from my own experience and for me it was the two week mark where I saw substantial progress. My bowel movements dropped massively, I only went to the bathroom 4-5 times in 24 hours. After the two month mark I can now sleep through the night undisturbed, I can even hold a BM through to the morning if needs be. I hope you see the same improvements like me.

Same here, I am 6 mos. out and the improvement for me has been great!  I am down to 2-3 times a day, nothing at night, unless I eat late.  Not everyone gets the same results, but things should improve over the next few months.  

You shouldn't be disheartened considering you're only 1 week post-takedown. That's unbelievably early. I'm just over 3 months post-takedown and it's still classed as early days because the adjusting period can be up to a year (or more in some of us). Things do slowly fall into place.

I'm still experiencing urgency but I know this is something that has a chance of passing after speaking with other members of this group and my surgeon, so I'm staying positive. I was on 6 imodium tablets a day when discharged from hospital to give me as much rest as possible, but once the bowel began to settle and consistency improved, 6 tablets a day became too much as the stool became too thick. I'm now down to 3 tablets a day and going around 5 times a day, once or twice through the night. Not bad, but there's room improvement.

You'll feel all sorts of aches and pains in that area in the coming months. I go through phases of having spasms in my bum cheek and to the left of my anus which feels like a slight pain/throb but there'll still be healing to be done. (Also, you're anus region will be becoming used to passing stool again which takes time).

UPDATE!

I'm now just over 2 weeks post-takedown and things are finally starting to get better. The spasms have stopped, and I'm learning to pass gas (still a challenge!)

I've started taking Beano with my evening meal to make the nights more settling. I've found that this helped.

In terms of bathroom visits, I'm now down to 4 a day and none during the night! I'm very happy with this progress and am looking forward to starting my life again. Thanks once again for the support guys.

Great News as it looks like things are starting to settle down.

although it has been 26 years since my surgery,  I remember well those first post op months.  It's like the pouch has to learn its function.  You have to learn what foods agree/disagree. It is such a learning process.  Back then, I remember it felt like I had to go to the bathroom every 20 min.  My docs told me to try and put it off as long as I could.  Back then, there was no internet, no support.  I called my doc - - I was so disheartened.  He said it would get better at 6 months and at a year I would be even better.  he was right.  Things did get better.  I won't kid you; it was a rough ride for a while! My thoughts go out to you and here are some things that worked for me:  When in doubt check with your doc first!!!

(1)  I kept a food diary.  I added different foods gradually to see what agreed or disagreed.

(2) Perianal skin care was very important.  I even carried supplies in a bag in my purse to use when I was out. Ointments (Hemmorrhoid ointment works for me just applied to the outer skin)   Perianal pads (soft cotton  shaped like a butterfly that wicked the moisture and caustic stuff away from my skin)   I used a portable bidet at home so I could keep really clean really fast)    Ok don't laugh - - I used a hairblower at home to dry my skin really well before applying ointment and pad.

3.  I can not say enough good things about cultured Bulgarian buttermilk. A glass of that makes my J Pouch a happy camper.

4.  Metamucil helps bulk up my stool.  Immodium helps slows my gut down. I only take it now on an as needed basis. 

5. having a supportive family.  We would be in a store, and if I told my husband I had to find a bathroom he was cool!!!  Oh and in the beginning it seems it took me a long time in the bathroom.  I think I couldn't  tell when I was through. He was so patient!!!  Now  I zip in and out of the bathroom in no time at all.

_______________________________________________________________________________

Hang in there!!!  What is that saying?   When you feel you are at the end of your rope, tie a knot and keep on swinging.    and know there is always someone here to listen.  Every question is important!

I have my takedown in 15 days.. currently have a ileostomy. I have read so many bad things about takedown.. I have had a lot of trouble keeping my output thick I have tried Metamucil, taking 8 of the 2ng Imodium  a day, tried eating bread, banana, Apple sauce, etc. now I just got put on lotomil 2.5 mg it helps a good bit but not 24 hours thru the day. I've read people saying it feels like shards ignore glass when exiting the butt with the acidic liquid output. I just feel like this last of  my 3 surgerys will be the worst due to the leaking, but mainly burning. I know I'm not gonna wipe, I'm just gonna pat my bottom so it doesn't get raw or at least helps it from getting too raw. I know baby wipes and all that too but I'm just scared. I have had problems with output this whole time so I just know it's gonna be acidic. Dreading the first couple months. Also wondering if its hard to work during the adjustment period ? Like what if a accident occurs. It just emberassing and it sucks and people can say what they want but I think have GI problems like we have is one of the worst things you can have. 

It has only been a week!  You will notice improvement.  

Thanks for the encouragement guys. Things definitely are getting better.

KC23, I'd strongly suggested buying a bidet toilet seat off amazon. It's been a lifesaver thus far at preventing butt burn. Also, I've actually preferred keeping my output towards the liquid side as I found it makes emptying easier. Have you tried not drinking liquids with meals? I read somewhere on here that drinking liquids an hour after meals keeps things slightly thicker. Best of luck with your takedown. I'm not gonna lie to you, the first week definitely sucks but things will get better! I've also read that over time your skin on your butt gets thickened from the acidic output so you feel it less over time. Get some Calmoseptine or Ilex paste as a cautionary measure.

Healing takes time. Be kind and patient to yourself. You'll get there eventually. Some people get there quick....others take longer. Hang in and best wishes!

I took your advice and bought a bidet! Not a bidet toilet seat, but a portable bidet bottle that takes batteries for better water pressure and will get the job done.. I have my takedown very soon! 8 days actually.. I'm still more worried about this surgery more than any others just because of the troubles you speak of and all of the troubles everyone else has had with takedown.. my last surgery was horrible.. I was ghost white and was not immediately gven a pain pump so was hurting tremendously and was given max medication that was ordered so basically yelled and asked for a pump.. I will ask my surgeon for one in advance this time so that doesn't happen again.. I'm mainly worried about the leakage and my bottom becoming raw.. is the ilex paste worth the money ?.. or what's another paste that works great but isn't so expensive ?! That preferably doesn't stink.. and does your bottom always burn from the acid to where you need the cream for your bottom? Or does your bottom eventually adjust to the new stool ? 

KC23,

I'm doing really well now so don't get discouraged. I'm not going to lie, my first week sucked! I was miserable, and as you can see by my first post, really needed to vent. Things have really improved for me now, I'm down to 4 bowel movements a day (of which one is in morning and one before bed, so I only have to make time for two bathroom breaks during the day's activities). That being said, one thing I've learned through my colitis experience is that no two people with the disease are the same. Everyone heals differently and goes through easier or bumpier roads, but in the end hopefully we all get there.

With regards to barriers, I use calmoseptine paste which is about $9-10 a tube if you buy in bulk. My bottom rarely burns. I'm only 4 weeks post-takedown so I'm still learning which foods give me butt burn. So far I've found 3. You'll learn which ones to avoid (hint, its the spicier ones). Glad you've bought the bidet, its a worthwhile investment! Please let us know how you're getting on after the surgery, this is a really supportive community!

Also, I'd speak to your anesthetist regarding your pain control. They're usually the ones who sort it out!

KC23,  You can also get Calmoseptine on Amazon or at Costco.  I get it at Costco for 5.00 a tube.  At this point, just about 7 mos. out I am finding I don't need it as often.  

Plain old zinc oxide ointment works great, has no smell, and costs very little. Just make sure it's always applied, so the skin never gets irritated. 

I had my take-down 2 months ago and it's now slowly getting better. I used to hate having a J pouch because I didn't have anything like Crohns (I had ibs and hundreds of polyps on my colon. My life was easier before the surgeries, but I've finally started to love my J pouch. Though I wish I would quit having accidents during my sleep. Even the butt burn isn't as bad as before and I don't go to the bathroom as much as before. I know it's hard, but it will get better, so don't give up! You can do it!! If you need someone to talk to, I'm here for you.

Erica,

Please give these a shot, they helped with my incontinence issues. Hopefully these help you as well. It's the patient information booklet regarding anal sphincter exercises from St Marks Hospital in London.

http://www.wakeman.co.nz/site/...%20for%20leakage.pdf

Thanks everyone.. do most prefer ilex paste or the calmoseptine for the bottom? I saw ilex is a lot more expensive than the other. And how long does everyone use the paste on the bottom before they can kinda stop usinitnandnjust use as needed.. or will I always have to apply forever.. or will my bottom kind of adapt and get used to the acidic output..

To be honest you'll just have to figure that one out yourself most likely. It's so individual that it's impossible to give an accurate answer. Some people come off the pastes, others change their diet and come off, others remain on it forever. Realistically you can try without it for a day when you feel comfortable. If the butt burn returns, you'll just go back to it! With regards to calmoseptine vs ilex, ilex is much more of a thorough barrier but can be overkill for others. I'd try the calmoseptine first as it's cheaper and works for a lot of people. If you start having problems and it's not working or develop a fissure, you can step it up to ilex

It seems like most haven't tried Ilex, if I'm interpreting posts correctly. I found Calmoseptine too intense, and just used plain zinc oxide for a while, and then an unusual one called Ferguson Forrmula.  For many of us it becomes unnecessary over time. My memory is fuzzy, but perhaps a year or two.

You will see what works but if products available,locally don't protect your butt burn enough, I'd highly recommend Ilex. It's a really good barrier, and when I had issues was the only one that worked for me. It adheres to moist skin better than others. You only use a little so a tube or tub lasts. I now only use at night or following foods that irritate. I clean area with vaseline when no warm water available to rinse (portable bidet). Buy big jars at Costco,

wishing you the best in your upcoming surgery! Though early days and  weeks can be rough, know better days will be ahead. Sounds like you're well prepared for this next step!

ljz

Thanks everyone .. I'm just gonna straight to the ilex, I like petroleum based products , and although it's expensive I'd rather use it and hopefully not get a fissure than wait til I get a fissure to get it haha. It's just expensive but I'll just buy a small tube first to see if t works and if so I'll buy a big tub of it later I do have one more question tho !! Did anyone bleed rectally or anything like that after there takedown ? 

Bleeding during the week following surgery is normal. Your bowels will have been operated on (new anastomoses) so give it time. Also, your surgeon may decide to dilate your pouch / anal muscles as they haven't been used in a while. This can lead to painless bleeding as well which heals with time.

Hello, 

I'm 25 and just had my takedown surgery 2 weeks ago. Yes, I know it's early, but I've been set back from the beginning. My 2nd surgery to form my Jpouch I had a full ileus with the NG tube for a week. Knowing this, my takedown surgery caused a partial ileus so I had the distention, could not eat and tons of pain. They sent me home with a partial ileus still. So it took me a week after surgery to eat any solids for the first time. Since then I have had absolutely excruciating pains in my abdomen and bum at the same time. I have uncontrollable spasms in both places as well, much like when my Ulcerative Colitis was at its' worst. I strain and spasm so frequently but nothing seems to come out but just enough to annoyingly have to wipe. I know I should be going to the bathroom frequently but I honestly only go twice a day and battle the pains, gas, pressure, straining and feeling of "needing" to go but can't. My surgeon claimed it's because I am considered "Type A Personality" and can not relax. I was told with having my UC bad for so many years (2010-colon removal in August 2016) that my brain trained my sphincter to never relax so it would not cause an accident. Therefore, causing the "no no no no don't go" to happen all day long until I can finally relax enough to fully go to the bathroom. I eat pretty healthy, always have, and drink plenty G2. I am fighting the gas more than anything along with the spasms. Simethicone does not help me whatsoever and Metamucil has always caused gas problems for me. I know they say water soluble fiber for bulking but without a colon the function is pointless. Insoluble seems to bulk too quickly and causes me to spasm before I even finish the glass. The "butt burn" is out of control. I went home with the Cleveland Clinic Skin Protective Paste, also purchased Triple Paste, Aloe Vesta and pure cortisone cream and absolutely none of them help. My surgeon has stretched me a few times at my follow up appointments but this last appointment today she said I was barely strictured so she wasn't sure why I couldn't go to the bathroom. Has anyone else struggled with not being able to go vs going too frequently? Any suggestions for gas? I also take probiotics. I have a "mom nurse" who overseas and also went to nursing school myself. I'm struggling with this reversal and am searching for advice. Please and thank you!

-Victoria

Hi Victoria,

I'm 25 as well and its been 4.5 weeks since my takedown. I had the same problems with spasms as well. They were debilitating and I can completely understand your frustration. The "type A personality" and difficulty relaxing sphincter is frankly a pretty stupid thing for your surgeon to say. Realistically, theres no evidence available which states this as the cause and if you search this forum, LOTS of people have gone through similar spasms. So whats causing it? A better answer would be no one knows. An educated guess would be your bowels are peristalsing against a newly formed pouch which is gradually expanding, thus causing pain. I'd consider even trying a few days without the probiotics. I was drinking kefir after my surgery (which contains probiotics as well) and I kept getting horrendous amounts of gas! Maybe try keeping a food diary to see whether specific foods bring on the pain?

As for what made it better, the 'aha' moment for me came when I learned how to pass gas. I laid on my side and just kinda tried to pass gas (very carefully!) whenever the pain came on. The pain gradually went away. Now, I don't get spasms anymore. I also started taking Beano tablets with my dinner. I did this to minimize the amount of gas and subsequent discomfort I get during night time.

With regards to nothing coming out / difficulty passing, I got a squatty potty which helped a bit. To be honest, you haven't used your rectal muscles in months and they've likely gotten de-conditioned. Give it some time and try not to get to frustrated by it. Even now, I sometimes just have to sit on the toilet for 15mins and play a waiting game... I know thats not ideal but I'm hopeful it will get better.

For the burning, I used a bidet toilet seat and minimal toilet paper. I also used Calmoseptine barrier cream which can be bought at any pharmacy, Amazon, or Costco (cheapest!).

Hang in there and take it day by day. My first two weeks were incredibly miserable, as you can see by my first post! It gets better!

I can't emphasize the bidet seat enough! A lot of us have been saved by it! Just make sure you get a warm water one!

Thank you so much! I think she was more along teasing me because she said also this is a Type A thing it doesn't happen as often to Tybe B people. She knows my history of going to chiropractors for my back problems from soccer and knew previously that I can't not relax to get adjustments fully. I had an incredible surgeon at the Cleveland Clinic and she honestly had the best bed-side manners and is very intelligent. She's the top J-Pouch surgeon currently there and her husband does the same surgeries for Neonatal, both do robotic surgery as well. I didn't mean for that first comment to sound as if she was blaming that as the entire cause. She was more or less giving an example that I need to be able to find a common ground with my body to be able to relax so my brain and J-Pouch and "newly functioning" muscles down there can learn how to function properly. I drink Kefir as well and can't tell when I do or don't drink it if there's a difference honestly. I'm going to have to look into the bidet toilet seat. I took beano in the past but it doesn't seem to help me much. Haven't tried it yet with my pouch so I'm open to giving that another chance as well. She prescribed me Bentyl today for spasms to take before meals because it's so painful to eat anything. Everyone recommends the Sitz bath but being a girl, that's very unsanitary can cause us more harm than good even though it would be so soothing. I feel like I'm only able to relax and get the urge to actually go to the bathroom when I'm in the shower and have been considering getting like a bed-side commode to put in the shower short term while I'm trying to re-train my mind and body. I will definitely be looking into that Calmoseptine ASAP. I appreciate the feedback and advice, thank you!

-Victoria

Beano works great on gas from beans, broccoli, Brussels sprouts, and similar vegetables. It has no effect on any other sources of gas.