Senior Pouchers

Hi Kathy. Four months wasn't long enough for me to get stabilized. But you seem to be making great progress if you can get 6 great days in a row. Give things time.....it gets better.

I know it all takes time but I guess I figured if I can get 6 good days in a row, not every day (unless I eat something I shouldn't). I am trying to be patient but when I feel like I am "popping" shards of hot glass, it's hard to "grin and bear it", so to speak. Thanks for the encouragement.

Kathy

I'm 67 and it's been 5 years since takedown (August).

First 6 months was the worst for butt burn etc.. Since then there are good days and bad, but mostly pretty good.

Most of my issues are generally related to what I eat or drink or medications from time to time. (I generally only use Vaseline to coat the area when sore as it seems to work best for me).

Guess I've generally been pretty fortunate (at least so far).

Best of luck to you.

Lew

Hi Lew - I'm glad that you are doing well. My "bad" days are not usually related to something that I ate or drank; at least not that I can determine. My diet avoids all the problem foods as a rule. There is the odd time when I might have a drink of alcohol or eat some tomato sauce or some onions and I don't have a problem and then suddenly wham-o, two days later I've got frequent loose stools and butt burn big time. I would not have thought that it was due to what I ate 2 days earlier. This can all happen despite taking 3-4 tabs of Imodium 4 times per day, 1 tbsp Metamucil 3-4 times per day AND an ounce of Pepto Bismol. Common sense would dictate that I should have anything except loose stools. It can go from very thick (when I contemplate cutting down on the med stuff) to diarrhea in a matter of a couple of hours. It makes no sense to me but I will try to have patience and hope for improvement over the months to come.

I am wondering if I have a fissure on the inside. I can't see anything but I get such extreme pain and burn on the inside from frequency even though the stool is not watery or even loose. It near has me insane for 6 days, 2 weeks ago and although the symptoms were a lot better, they were not totally gone. Today I had increased frequency so now the pain is back. My normal day right now is 8-12 trips to the loo; on frequency days it is 18+. I am praying for the 5-8/day point.

When I had my ostomy, I had frequent trouble with burning and raw skin around the stoma. I understood that problem because I was not taking anything to slow the transit time, nor thicken the output and I was eating everything so frequently my stools would get more watery and then burn my skin.

Thanks for listening. It helps to vent.

You'll make yourself crazy trying to acheive consistentcy. Even 19 years post op, my output is not consistent. I was 40 when I had my colectomy. But I am happy if there is no pain or urgency. That first year is rough, as it is all about the pouch adapting to its new role as a reservoir and to absorb water. It takes time, lots of it, as the mucosa has to change on the cellular level, remodeling, so to speak.

I found that Metamucil did not work for me, even though others swear by it. It just increased gas and urgency, so I stopped it and just maxxed out my Imodium dose (8 per day). Don't be afraid to change your meds. If they don't help, no point in taking them.

If you had a fissure, you would have searing pain with every bowel movement.

Jan

Turned 60 in June. I had UC for 32 years. Colon removed 9 July, Reversal last Wednesday (completed 1600 Wednesday, discharged 1000 Friday) so three months between surgeries (surgeon was actually willing to do it three weeks ago, but I couldn't fit it in since I was interstate etc etc).

If I had my druthers, I'druther a functioning colon, but I'd much rather have a J-Pouch than a bag. As far as going to the toilet 6-12 times a day, that's almost a luxury compared to the last few years so it doesn't concern me at all. I use the Butt Cream (mainly Zinc Oxide) and baby wipes as advised. I know there will be butt burn, but, again, I'd prefer this to a bag - that's me.

Stools so close to surgery are loose. Pain is occasional and manageable. I am of the view it can only get better. There will be ups and downs, but that's life.

I do not have a fissure so I cannot imagine the pain and I can only empathize. Hope it heals soon and turns out for the better.

Thanks Kevin and I wish you all the best for your recovery and months ahead. I agree with you. I also am not sorry that I made this decision. I'd rather the pouch as well. Luckily I do not have a problem with my exterior skin. I clean (every time) with the portable bidet and warm water and pat dry and use Vaseline as a barrier. My burn and pain is all on the inside and I have found nothing that helps except time and patience which I've never been good at. I know it will get better and then I will have a short stretch of good days but when the pain is this bad, and I'm not getting any sleep, it seems like forever.

I will soldier on - not that I have a choice - and pray for better days for all J-pouchers. Nevertheless, it feels good to vent to people who know what it is all about.

Time to go back to bed and see if I can catch some more winks. Doesn't feel too promising but I shall try.

Jan - I do have searing pain with movements that doesn't get a chance to settle before the next bowel movement. When the frequency lessens, the symptoms become bearable because it only hurts during the BM and not in between. That's why I'm thinking fissure however there is no evidence of any bleeding. No exterior skin problems at all.

Hi Kathy,
I had my take down at age 58 and have had my j pouch now for 4+ years. I would honestly say my experience with the pouch has been mixed but as others have noted it is preferable to my years with UC and my year with an ileostomy. I agree that us 'mature' pouchers have more complications as a rule, but then again, we didn't have to go through dating, marriage, and the early years of family stressors with a pouch. We have all had our challenges- young and old. I think the hardest part for me is actually the emotional-psychological aspects of living with unpredictability, uncertainty and sometimes stretches of chronic pain or frustration with a chronic illness/condition. It is soo hard to be patient. Try your best to be gentle and patient with yourself as you are in the very early stages of adjustment and your body will need lots of time to adapt. Keep your humor too as best as you can too. It will help you considerably in the future. Take care.
Best,

Hi Kathy,
Heres an oldie,Im 84 got my pouch at 69, doing very well but I am just a healthy person over all. I have no problems doing everything I want to do. I am a very advanced tap dancer dancing every week and performing for the rest homes now, but even with a new pouch was performing with a group for clubs. Seems the busier I am I don't have to go poop much at all through out the day. At first we all had a rough time getting used to our new plubming but after a yr or so I realised I could hold it, but with colitis accidents happen and couldnt be stoped.
I think I am the oldest one on this board but Im so fortunate to only have a little blood pressure problems which the low dose pill takes care of. Ive never had pouchitis or have to take anything for the pouch so I forget I have a pouch most of the time.

Wow Gloria! You are a real success story. You are my new idol. I want to be just like you. So glad that you posted. Thanks for sharing.

I am 60 and have had the pouch for 10 yrs. for the most part it has been great. I agree with the others on time. It took me a full year to feel good after 2 major surgeries. Even 1 surgery takes its toll on our body.
For inside butt irritation I use procticydl ointment by rx and it works great! Also try lomotil instead of Imodium as it will also ease the pain.
All the best in your recovery.

Thank you Fosty. I will ask my doc about the Procticydl ointment. As for the Lomotil, I want to ask about that as well. I know that it is not prescription but I have considerations with regards to the Atropine content. Also, all of that stuff can become very costly for us Canadians as you know. It was costing me $75 every 10 days for the Imodium until I found it on eBay. From eBay, I get 2 months worth for $35 including the shipping. Hard to believe isn't it? That's an idea of the drug mark-up here in Canada. I just searched eBay for the Lomotil (both trade and generic names) and don't see anything.

Things are starting to settle down. I believe I have a fissure and it may well be starting to heal now. It is still painful to have BM but the pain is settling quicker between trips to the loo.

Lomotil is prescription only in the U.S., not sure about Canada. Might be why you don't see it on eBay.

Jan

Good point Jan. Likely RX her as well, I haven't checked. In which case I shall ask my doc about it. Plan to put in a call for him today. Haven't slept in 3 days now.

Lomotil is a prescription here in Canada as well. It is helpful in the early times of pouch and periodically ongoing. It should be covered on any plan.

Hmmmmm! I was 60 when I was diagnosed with breast cancer. Sixty one came around and along with it pan colitis which didn't respond to any medical intervention so.....out "she" came....the colon, that is. J-pouch constructed. Felt soooooo good with the baggie I kept it for an entire year. Had a difficult time giving it up for the unknown but did so at age 62 and have not looked back since. Am now 74 and living quite well with my J-pouch. Can eat and drink any/everything and may experience "symptoms" when I over-do but I go ahead and live my life anyway. If I need to do so, I take a pigging out-timeout for a day or two in order to let everything calm down. It works for me!

Lomotil is also rather inexpensive. The atropine is a non-issue for most folks unless they overdo it. I think in over 10 years of daily use I felt the atropine once, when I was a bit dry and took more Lomotil than usual.

Wow CeeeeCeeee = Another senior success story. So encouraging.

Scott - I have both urinary and liver issues both of which are contraindicated with Atropine so I will need to see what the doc has to say about safe amounts. Would be nice to get the Lomotil if it is covered by my pharmacare program and works as well as the Imodium does.

Lomotil is labeled as contraindicated with liver disease. Imodium is labeled as "caution advised" with liver disease.

My S Pouch has been an awkward addition to say the least! Its now been operational for 10 years and as I age it is becoming a nightmare! My final visit to the throne to empty the pouch can take up to 5 hours! I am now seriously looking into pouch irrigation as it is now taking its toll on my back, I am due to have an MRI to see what is causing the problem. A few months ago we moved into a bungalow where the toilet is much smaller than the previous one and is causing me severe back pain and left leg pain. I became a pouchie at 43 and if I'm honest its been a nightmare for me and taken all my confidence away as I am reluctant to go out unless there is a toilet nearby! I went through a torrid time after being discharged after my two operations!

Here in OZ Lomotil is available both as a prescription med and over the counter. Because of the way our heath system works it is cheaper, but less convenient, to get it via a prescription (on the PBS register).

Regardless, both my GI Doctor and surgeon say lomotil is fine, but do not use on a continuous basis. Not because of any health aspects, but because (they say) it ceases to work after a couple of uses. they say its purpose is to hit the gut and do what it needs to do. The surgeon said that if you need long term use then to alternate between lomotil and immodium (immodium supposedly also loses efficacy after continuous use so switching between the two breaks the continuous use cycle).

Clearly people are using lomotil and immodium long term and it would seem the efficacy has not dropped off so I don't know. Again, I'm just passing on medical advice I have received.