No all those symptoms are definitely not normal, you need to treat them!

But don't think to the ileostomy; you had those from the first day? or they appeared over time? In the latter case, it could be pouchitis, and you need to try ciproxin for some weeks.

Assuming the surgery was done correctly, here in Italy there is a lot of redoing pouch due to bad previous surgery. But I don't think it's time to think to a new surgery.

Thank you for responding.  The rectal pressure and discomfort sitting has been since day one from J pouch creation three months ago, but has gotten significantly worse since takedown.  The gas and rectal pain has been since I started having "normal" bowel movements.  I am wondering if the surgeon positioned the pouch in an non-ideal position.  Strongly leaning toward permanent ileostomy and removal, which he said would be a simple operation to complete.

Polaris, are you in the U.S. Or Europe?  It doesn't sound normal to me either.  Jeffrey had lots of issues from the minute he was connected to the most-pouch.  It turned out he had a leak, micro tear, in the pouch and eventually developed an abscess and fistulia.  I would suggest going to see your GI as soon as possible.  Jeffrey was also up all. Ight, burning pain, exhaustion, pain everywhere.  It was horrible for him.  In March they diverted him and it's amazing how much better he feels but he does not want a perment ostomy.  He is bound and determined to get off that bag.   Your situation sounds vaglee familiar.  I would go see yourGI and have him do a scope and a capsule study.  That may give you some answers.  Good luck.

 

Thank you Jeffsmom.  I am in the US.  The sensations I think are more frequent annoyances than tremendously painful, but not things I want to live with longterm.   I am hopefully getting in to see the surgeon this week to discuss my issues and what the options are if I decide to go back to the bag.  From all of the positive reviews of J pouches, I didn't realize it would be so uncomfortable in experience.

Gee, two weeks is nearly nothing in the grand scheme of things. If I had a nickle for every story I heard about how much more difficult this early post op period was than what was expected, I would be a wealthy woman. This such a common tale.

 

Sure, a small percentage have unrelenting symptoms of diarrhea, urgency, anal pressure, gas, night time incontinence, etc.. But, the vast majority of us acheive a reasonable function within a few months post op. Do not measure your progress by days, but by weeks. It takes 6-12 months for full pouch adaptation. We are ALL impatient, since we went through so much to get to post op phase. But patience (and reassurance) is what you need. Most people see signifigant improvement by 8-12 weeks.

 

Try not to jump to conclusions that your surgery has failed. It is way to soon for any of us to advise you on that. Hopefully, your surgical follow up will be helpful and nothing will found amiss. It is possible you have an anal stricture, which would be easilly dectected with a digital exam. You could also be having anal spasms from the irritation from caustic stool. Maybe an antispasmodic would be useful, along with a good barrier cream. 

 

Good luck, and remember you are very early in your recovery.

 

Jan

Why you think to perm ileostomy, you shall check why your pouch is working bad and take action after the diagnosis! Only if a second and third surgeon opinion is done, and after xray, endoscopy, and so on, you will decide if excise permanently the pouch.

In your situation I would be urged to find a very good and experienced surgeon and find with his help the reasons you have troubles! And if the pouch should be badly done, it will always be the chance to get a redo-pouch which will work. ref: http://www.ncbi.nlm.nih.gov/pubmed/11182418 http://www.ncbi.nlm.nih.gov/pubmed/8482169

Thank you for the helpful responses. I will DEFINITELY get a second and third opinion if I decide to have the pouch redone or removed/end ileo. The surgeon checked the pouch and said it looks completely normal.  He said it is possible my colitis is attacking the cuff which joins the j pouch, but that everything looks 'normal'.  I will have an MRI to check for leaks, but everything looks normal through pouchoscopy.  I am back on ulcerative colitis suppositories and cipro for a month, so I will give it two months to resolve and see if life gets better than with the ileo bag.  Apparently following these surgeries, our insides need time to heal between operations, so if I decided ultimately that I preferred life with the bag, the operation would have to be scheduled 2.5-3months from now.  I think that is a good thing in that it will give a chance to see if these symptoms resolve and if not, at least I know what I am getting into with the end ileo and J pouch removal, which is possible.

Also since it was painful sitting from construction you may have hypertonic pelvic floor happening.  I did prior to takedown, and got pelvic floor physical therapy. There are times now when it's bad and the levsin isn't cutting it that I do the exercises and at times apply a warm heating pad to the general area and get relief.

After just 2 weeks all these symptoms seem completely normal to me. They are exactly what I went through. I am now 2 1/2 years post op and it took me a while to adjust also. I was looking for that instant gratification and thinking every symptom was doom and gloom for me. Jan is right you need patience. Things aren't going to be easy for a little while your body is adjusting to not having a major organ its been functioning with all along. The pain is post surgical pain it comes with the territory you've been taken apart and then sewed back up again especially in that area you only have a little rectum left that has been sewed to your small intestine. Butt burn is oh so common and I don't blame you not wanting to live with that that would have been a deal breaker for me also but it does go away after a while when you start eating more you won't have just the acid from your stomach pouring out its like lava erupting from a volcano. All these seem normal and they will subside. For the gas pressure I would look for GasX or something to relieve that also I was unable to pass gas for a while but found later on that I could on my stomach and my right side. Don't lose hope. We all experience this type of anxiety this soon in our recovery it's normal. I found it helpful to seek a therapist so I could adjust mentally and emotionally also because it is a grieving process you did have a big loss that you must live with for the rest of your life. I wouldn't go seeking other opinions just yet or throwing in the towel just have patience and you'll relize those little victories here and there. I could give you one last word of advice that stress will only make a bad situation worse so try and find ways to relax a little. Good luck. Hope that helped a little.

Polaris, 

hope the Cipro is helping but want to encourage you to keep working with your surgeon and GI to help you during this transition phase. I had a rough road, though not as bad as others. Had cuffitis, which is UC / inflammation of the tiny connection between the pouch and the anus. That lasted almost a year, and was treated with multiple cortisone creams/suppositories and some other drugs including prednisone. I was adamant that I didn't want the bag, and I glad I toughed through it as im doing well now. The acidity will definitely improve with time but I take Colestipol,to reduce the acid in output. I find squirting hot water on back end really helps me release stool without pushing or straining. Mostly do that at home. I also use Ilex paste, order online, to coat anus after BM -helps immensely with burn from output. I know it's hard but be patient and give the pouch more time. It will be worth it! Best of luck!  LJZ

As Jan Dollar and phoenix2g stated, two weeks out is not unusual for those symptoms.

 

I had my colectomy and ileo-anal pouch construction done November 2014 and the reversal 7 weeks later, so I am now 7 months out and am "going" 6-8 times per day and night (was between 10-15 times initially) and the number of times per night now varies depending on when and what I've eaten. Prior to this I had weight-loss surgery performed (vertical gastric sleeve) back in 2008, so I have a "tube" from my mouth down to my anus and no pouches other than the J-Pouch, so food passes through my system in about 4-6 hours.

 

Yes, I still have the feeling of needing to go after going, even though there is nothing there, and I've been told that this is still the way my body is adjusting to its new configuration and that it does take between 9 and 12 months for the "new norm" to settle in. Baths or sitting in a jacuzzi are great to relax the muscles once your ileostomy site is healed over and you get cleared by your surgeon. Mine took about 3 months to fully heal after opening once.

 

That said, I see progress from before the surgery to after in that for the first four months I had terrible pain in my digestive tract behind the ileostomy site whenever food or gas passed by. There was no blockage as I had an X-Ray and MRI done (it was that bad) and apparently it was the small intestine at the loop site being stretched. Thoroughly chewing to liquify the food and limiting the amount eaten helped. Taking Gas-X and Pepto-Bismol both also helped some though not much.

 

Yes, there was burning "down there" and medicated wipes in place of toilet paper helped. Also dabbing rather than wiping helps. That gradually disappeared around month 5, but occasionally returns depending on the food that I eat, but is not as severe as it was initially.

 

So, as was previously mentioned, while we want to return to normal as soon as possible, we need to look at the long-term progress.

 

In my case, my prescription medications for the UC and the medications to counteract the side effects (diabetes from the Prednizone, for example, resulting in needing Metformin and insulan) have been eliminated down to two plus a multivitamin regimen, so I am seeing that the benefits outweigh the issues.

 

Hope this helps.

I tried very hard to follow a strict diet which my surgeon recommended in order to break in my functioning J-pouch.  It was hard to do because I had chosen to keep my temporary ileostomy for a full year and could eat and drink everything!  So.....for six weeks I severely limited what kinds of foods/drinks I would eat/drink.  Then, VERY gradually, I introduced one new food at a time to see if it worked.  If it did, I continued with it.  If it didn't, I eliminated it for awhile and tried it again later.  Eventually, I could eat/drink everything!  All of this took time but I worked on it like a scientist!  It's been 12 years plus since my takedown and I can eat/drink everything.  My J-pouch is almost never problematic.  Once in awhile I experience pouchitis but it responds to a course of Flagyl.  I use Citrucel instead of Metamucil because it creates less gas.  For years I used Metamucil but my surgeon recommended switching.  Having a J-pouch means I have a new-normal way of eliminating.  I know what is normal for me and that's what counts.  Best wishes!

Thank you all for the support and extremely helpful advice and feedback.  This is an absolutely wonderful community.  Although things are really quite rough right now, I take heart in your positive experiences with healing and adjustment and believe things will get better over time as you say it will.

 

Thank you all for the support and extremely helpful advice and feedback.  What a wonderful community.  Although things are really quite rough right now, I take heart in your positive experiences with healing and adjustment and believe things will get better over time as you indicate.

 

Polaris, I have been in your shoes not long ago. I'm sorry, but you have a lot to realize about the position you are in now. Two weeks is not nearly enough time to make any kind of judgements about your j-pouch. You can start making these assessments on a scale of months. By getting the j-pouch you have taken the plunge, and now you have to try to swim. Right now, you just have to treat your symptoms as best you can and achieve the highest quality of life you can achieve right now.

 

I don't know who your surgeon is, but they aren't being real with you if they tell you that pouch removal is a simple procedure... it is a very serious operation that should only performed by a highly experienced colorectal surgeon. The risk of permanent impotence (if you are male), chronic wound risks, and issues with the adhesions created should be enough to make you understand why pouch removal is last-resort measure. Unfortunately just "going back to the ileostomy" is not an option for anyone who has not ruled out finding a reasonable, non-surgical alternative for improving their quality of life.

 

You are really fortunate to be going 4-7 times a day only 2 weeks after surgery. Two weeks out I was going 25 times a day, experiencing constant rectal pain, screaming from how intense my perineal irritation was, and losing my mind from the misery and weeks of sleeplessness.  Four months later, things are better, but only on my very best days I go 8x daily. Usually more like 12 or as high as 15. My quality of life is much lower than when I had an ileostomy. Unfortunately, I think most surgeons talk up this surgery a lot without painting an accurate picture of the difficulties. But right now you are in this situation and going to another surgery will not necessarily make things better.

 

Lastly, I want to give you some tips regarding butt-care. DON'T slather calmoseptine, rather wash your bum with a bidet, and then PAT everything dry with a towel. The two important principles are to keep the whole area dry and not to physically irritate it by rubbing it, especially with something as coarse as toilet paper. If you use TP, pat with it, do not wipe. If you have anal irritation, a light coating of calmoseptine is better in my experience.

Hello Polaris

I really appreciated reading your story. I am 2 and half months post surgery and suffering with the same symptoms you are.  My G.I. Dr. and my surgeon keep telling me I should be patient, that it isn't an exact science and it can take 6 months to a year to settle down. I am so fed up that I am considering having my ileostomy again. 

 

My colitis was so severe, that the last time I was hospitalized in Sept 2011 I begged them to take my colon, which they couldn't save anyway it was so diseased.  I learned to live with my ileostomy and was quite happy with it despite the occasional leakages. I was pain free, and had control over my bathroom trips. 

 

Now, I feel like I have colitis again.  Having to use feminine hygiene products and adult diapers for times when I feel I have no control.  I had an MRI 2 weeks post surgery and it showed inflamation of the pouch which they named pouchits. They gave me Cipro first which I had a bad reaction to then Flagyl. I am on a low continuous dose of Flagyl now, immodium, and Metamucil and hopefully I think it is slowing things down a bit.. I am really thankful for your post to know that i am not the only one, and it isn't all in my mind.

 

Sitting in warm baths 2-3 times a day and gently washing the area has helped the butt burn tremendously.

 

Like Soloman pointed out, my Dr.s didn't take the time to tell me how it could really be after surgery.   I have a job where I am constantly on my feet, and don't have the option to be running to the bathroom constantly, so I cannot go back to work until I get this under control.  I have always been very athletic, running, weight lifting, even with my ileostomy it didn't affect my lifestyle.

 

This Jpouch surgery has severely affected me. I am only now starting to walk short distances and definitely am not confident enough to work out.  I am trying to be patient and taking small baby steps. I wish you luck, and will be following your posts.