So sorry for your awful night.  I don't know if people lose their pouch to a fissure, but I would think that would be really rare.  I'm like you - when something is going wrong with the pouch, always thinking the worst...maybe that is human nature.  Do get the ointment Dewey suggested - I hope someone is there to help you get it. The exhaustion etc. is awful.  I believe fissures will heal - do check with your doctor and see about getting some more relief.  I hope your are remaining hydrated - which is so hard when you are going 10 times a night.  Know we are out here in pouchland and we care.  I am hoping in a very short time this too shall pass and you will feel much, much better. 

I would think the only relationship to fissures and the jpouch would be that you decided the pain of managing fissures were too great that you might opt out.

in the short term, you might want to use a bidet, absent one, use a spray water bottle, even say a plant watering spray bottle might substitute. try not to use tissue, if you must try using baby wipes. I would also slather on A&D ointment as it has some first aid healing properties. maybe even try Neosporine as a short term solution.

I believe fissures can heal, think of them as badly chapped skin on your hands during cold and dry winters? I don't know if that's medically or scientifically accurate but I think its close.

You can loose the pouch due to fissures, but it is pretty rare and mostly if they are Crohn's related. Sometimes they are bad enough that a diverting ileostomy is needed to provide rest for healing (and rest for you!).

Jan

Hi all,

I'm completely new to this site as I am also completely new to the j pouch. I had my surgery beginning of December done all in one go.. I thought it would be good and that the nightmare was over but I was so wrong. I have been having the same problems as you have been talking about Sally. It is unbearable, I'm not sleeping at night at all as i constantly have a uncomfortable full feeling and have the urge to go to the toilet and when I do then barely anything at all comes out. The gas is driving me insane as when I lie down I can feel it moving down and I get a sudden urge to go to the toilet and yet when I get there nothing comes and the gas moves away. I've tried to see if the gas will come if I stay lying down but unfortunately it never comes as it just pushes stool out. I have never felt so depressed in all my life! I thought this would be the end of my suffering and a new start but at the moment these last weeks since I had the j pouch formed have been so bad I don't know how much more I can take! I haven't been able to leave the house for more than a few occasions and even then I'm struggling to walk around as I have this constant urge that just doesn't go. I'm trying to hold it but it is taking all my energy just to do that. I have seen my surgeon who performed an examination and unfortunately it appears there is a small hole in the j pouch.. He has put me on a course of antibiotics and I am waiting for an MRI.. Has anyone ever experienced this before? I am really at the end of my tether now my life has been put on hold for the last 14 months and I just want some normality back. I really am praying that this hole fixes itself..the surgeon wasn't too sure but has said that depending on the MRI I may need to have an ileostomy again and wait for it to heal. I really don't want to go through it all again. 

Any help/advice would be much appreciated!

liz xx

ooft sorry to hear Liz. first things first, see what the MRI reveals regarding the small hole, sounds troublesome and if it comes to it and you need a temp reversal so be it. you will just have done the procedure in a different order. many of us if not most have had temp ileos on the way to jpouch. I'm curious even if it be water under the bridge why you did it in one step? all of that aside it is still very early days for your adjustment period and over time I am confident that you will be glad you are here as a jpoucher. but it will take some time and maybe a little tweak here and there. I also wonder if the pressure and sense of need to evacuate is cuffitis which might also require the elegant use of suppositories? cuffitis really is just a jpoucher name for proctitis which often leads to tenesmus, or at least that's the way I would describe it all. Jan or someone might have a better medical and scientific terminology. hang in there, it should get better.

I agree with Dewey - I'm so sorry you are going through this - it's awful.  Been through punctured small bowel, etc.- all kinds of issues - 30 years with the pouch and I assure you - 90 percent of the time was good.  (It is never as good as living with a functioning colon).  The feeling the gas roiling through is something that  you get used to and it seemed to calm down over the years (or else you get used to it).  The feeling of gas and discomfort and also something I just got used to.  Your situation now is difficult due to possible hole in pouch - I wonder if they can throw some stitches in it - that is what they did when my small bowel was punctured once - it was not fun, but it fixed the problem.  I am so sorry you are in such distress and many of us have been there...but have found that these horrible times pass and that while given the choice, we'd all prefer a happy, normal colon - the pouch was the only way to live life - and it was worth it. I pray for the day when they have adequate drugs and or genetic ways to throw all these illnesses out and let people have their colons!  Again so sorry you are suffering - please keep at your surgeon and if nothing helps - get to a GI person - they are often more helpful that surgeons with all the issues that go along with pouch.  (this is after you be sure hole is fixed).  Surgeons are surgeons - a medical doc  - such as a GI - will work with you long term to try to solve problems - surgeons operate and then generally, that's about it - they won't tell you this, and there are exceptions -but mostly that's how it goes.  They are onto the next surgeries....

Fissures can certainly heal, but they can be stubborn and slow to respond. You have to treat them gently, sometimes for quite a while. Are you getting any treatment for your fissure? That could help a lot. Also, try to keep your stool soft (but not liquid).

Thank you for your kind words Dewey and Angie. It does really help to share experiences sometimes you feel so lonely when you are going through all of this.

Dewey- I didn't realise it would be done all in one.. When I went for the surgery I was certain it would be done in two stages and that I would have my bag for a while longer, however the surgeon who performed my surgery said that when he saw inside then he saw I had healed well from my previous surgery and he saw fit to done it in one. I was very surprised actually happy as it was done but still worried as to how things would be going to the toilet with a raw pouch.. He said in 70% of cases its two steps but 30% he does it in one. Yeah I have wondered about cuffitis myself  but when I asked the surgeon he didn't seem to agree which is strange as all he did as a finger examination. Which was incredibly painful. If it is cuffitis does that mean immunosuppressants for life? Or does it clear up with the use of suppositories over time? I tried all sorts of immunosuppressants when my colitis was in full flare (I was literally diagnosed in the November and then struggled for 4 months until I had to go into hospital for urgency sub total colectomy) and they never worked at all. Unfortunately for me as soon as was aware of any symptoms then it had already became very severe pancolitis. 

Angie, thank you for your support and help. I do wonder if they could repair the hole as I have read that it is possible sometimes. The surgeon Hasn't been that helpful I had to practically beg and beg for him to see me and then he has now left it for 2 weeks for me to deal with and wait for this MRI which by the sounds of it isn't going to happen before I see him (which is on Thursday next week). I just get so deflated with it all, I try to be positive but sometimes you get yourself in such a rut that you don't feel like you can be positive. I do too it is such a cruel illness. I feel for everyone else as well who had gone through this but it is good to know it gets better. It's just it has been about 8 weeks ish for me now and there is still no light at the end of the tunnel. However it has helped me to feel a bit better hearing your support and that you are all getting on well now. Thank you x 

Sorry for the typos I meant emergency not urgency *

Elizabeth, I see that you did in fact have a two step, with the first step being the colectomy as an emergency. While uncommon, I've seen a number of folks here who had their surgery like you, with no diverting ostomy with the second surgery after colectomy. 

I hate to say this, but it probably is unlikely that the pouch leak will heal on its own with just antibiotics and no ileostomy. In your favor is the fact that you are early in the post op period, so it is not as if it has been going on for months and months. But, it likely has been there since your surgery. I hope your MRI is soon. If the leak is significant, you may want to get a second opinion if your surgeon does not have much experience with these sorts of complications.

If you had any significant cuffitis, your surgeon would have been able to feel the bumpy tissue on digital exam.

Jan

Hi Jan. yea sorry if I did not make it clear I did have two operations but I know that often the next step is the j pouch formation keeping the ileostomy and then the reconnection which in a way I think probably would have been better as it seems it may have stopped problems as it would have healed sufficiently from the initial formation. 

Thank you for your honesty, if that is the case then I wish I could have had the loop ileostomy but obviously the surgeon found it was appropriate at the time for it to be done in one step. How does this even happen? Things weren't too bad initially I was able to hold it during the day but still having some level of frequency at night which wasn't good as I didn't get sleep, but wasn't as bad as it is now. Things started to change probably just after Christmas. It has been painful to sit down as well.

thanks I hope the MRI happens soon as well I don't want this to go on and on I can't deal with putting more of my life on hold, financially its not good at all either! Will try and update if I have any positive news about the whole situation.

If it makes you feel any better, skipping the diverting ileostomy did not cause the leak. They happen regardless. But, it does reduce the contamination coming from above. If your surgeon did not order your MRI as urgent, you should call back to get this done ASAP. Usually I am not one for making too many demands, however, it sounds like you have an abscess brewing and it will likely get worse before it gets better. Be sure to take your temperature twice a day, before taking anything with Tylenol or NSAIDs in it.

The fact that you have pain when sitting is significant. I had a presacral abscess that formed from a pouch leak. I developed tailbone pain that worsened and had a low grade fever (100-100.4) for about a month post op. Then the pain became intense and I spiked a fever of 105. That landed me in the hospital for 12 days with emergency interventional radiology procedures. I wound up having a drain in the abscess pocket for a month. The good news is that the leak had sealed off early on and I did not need an ileostomy. I still have my pouch 20 years later. I had a 1-step procedure, and probably should not have, as I was on high dose steroids at the time.

Jan

ah yes for clarity you had a 2 step vs a 3 step. candidly from what ive heard the loop ileo is often a brutal period as for whatever reason, maybe Jan or others can explain the nature of the loop ileo makes for more challenges.

I agree with Jan though, if indeed there is a belief that you have a leak, I am at wits end understanding how the surgeon or any medical professional overseeing your care isn't attending to it immediately?

I think you need to call your surgeon, your GI, your PCP, anyone who will help get this looked at more closely to determine the nature of the beast so that it can be quelled.

I personally have never battled cuffitis so can only say by observation that cuffiitis appears to be managed with suppositories, sometime even just mesalamine suppositories as opposed to steroidal ones. but someone else can probably give you a better answer.

I will also guess that without the primary offending organ ie the diseased colon that the cuffitis might be easier to manage now than before. to my mind cuffitis is akin to proctitis but that's just my mind I could be wrong in that assessment.