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Still leaking, and despairing, looking for advice from experienced pouchers

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Posted 4/17/2012 7:23 PM (GMT 0)
There doesn't seem to be any improvement. I am completely dependent on the tincture of opium and immodium plus psyllium husk. It's like blobs come out and the rest stays in, or blobs come out and I have to really exert myself on the toilet to empty my pouch. It never seems to be empty, there is always more in there and I cannot empty it completely. I woke up with a blob between the cheeks today, because I didn't take the immodium and opium before bed. Then again when I got to work, and several times this evening. I go to the bathroom and clean it up before it has a chance to smear but like three times in one evening plus having to strain.

I am starting pelvic floor physio therapy beginning of next month so maybe there is some hope there. I am really terrified of this pending unemployment which turns into social welfare after six months, and having to live this semi-incontinent life at the same time. This is really much too miserable than I can cope with.

Posted 4/17/2012 7:47 PM (GMT 0)
What could be wrong? Did you talk to the surgeon about this? Is it a bout of pouchitis?
Posted 4/17/2012 7:54 PM (GMT 0)
I'm really sorry to hear you're going through all this B'Dereh. Have you tried posting on the J Pouch board for advice? I'm sure people will have gone through exactly what you're going through and will have come out on the other side.

How many immodium are you taking at the moment? I know you can take quite a lot of it - when I had my loop I would take 8 tablets some days. Maybe a bit more might help?

I wish I could cheer you up, I don't like to think of you having a miserable time. You've helped me with a lot of advice and I'm very grateful for it. It's not fair you're going through this and having to deal with all the work issues as well.

Can you talk about any of this with any close friends? I know it might not sound ideal, but I know that a couple of my close friends really helped me get through some of toughest times last year.
Posted 4/17/2012 8:22 PM (GMT 0)
Nope, somedued, no pouchitis yet! Just a baby pouch trying to have its way with me.

I am going to wait and see what I can do with the physio. Am feeling vaguely pissed at the GI and surgeon for just setting me off in the world like this without a hint of advice, but hey, they did their job, so what should anyone expect?

Ric, I am taking about 5 immodiums along with about 15 drops of opium each time, and while it mainly keeps things under control, I am constipated and uncomfortable. and could even have a blob thing come out at the same time. It is weird. What is really wierd is realizing I do not have any friends with whome I can talk about this with. My ex got on my nerves completely with remarks about how UC is caused by an amoeba and I got good at recognizing this kind of dismayed bordom passing across some people's faces, oh no, she is starting up about that bag or about her poo again...... And I remember that a couple of freinds actually dropped off when I became ill. Othe rpeople have a hard time comprehending.
I think I want to find a shrink for this time in my life because it is all really too much. Even if I "get" to keep my job, it is all still too much.

What bothers me about these blob things, is not about how to keep it all firm enough to stay in there, but what is this saying about my future. The other weird things is that the muscles are intact. Maybe they are just not strong enough, because they get weakened during the pouch op. Maybe the therapy will help a lot. I could cope with a tiny bit of smeariness for the rest of my life but not this situation in which I can't think about too much else. I mean, I am also supposed to be datin, that is, as soon as I find someone I like who is actually available.... not that I'm feeling particularly presentable. Am still going about 11 times a day. That is so great that things for you are more or less normal, as if you never had UC or surgeries or anything.
What are you eating?

And on that note, when are you going to get back in touch with her? Are you still at your parents?
Posted 4/17/2012 8:34 PM (GMT 0)
My pouch is one month old in two days, whatever that means.
Posted 4/17/2012 9:02 PM (GMT 0)

B'Dereh said...
My pouch is one month old in two days, whatever that means.

Did you talk to the surgeon? Go ask him/her, is this normal. It can't be normal.
Posted 4/17/2012 9:05 PM (GMT 0)
Hopefully I won't have too much problems. My takedown is tomorrow and I've got the cream and the wet wipes ready. I also have some probiotics on the way.

I've been on a liquid diet all day and I'm about to stab my TV anytime someone mentions food or shows food. Those KFC commercials...OMG
Posted 4/17/2012 9:10 PM (GMT 0)

NewShinyCD said...
Hopefully I won't have too much problems. My takedown is tomorrow and I've got the cream and the wet wipes ready. I also have some probiotics on the way.

I've been on a liquid diet all day and I'm about to stab my TV anytime someone mentions food or shows food. Those KFC commercials...OMG

hmm you spend two years with your pouch? You must have liked it. The standard is 3 months...I believe.
Posted 4/17/2012 9:13 PM (GMT 0)
B'D Would you consider something like the paleo diet while your pouch heals? I know it's VERY restrictive (basically meat, eggs, well cooked veg, low carb fruit) but there's a woman on the jpouch site (OliveOil if you want to check out her posts) who had severe leaking for years following her surgery and chronic pouchitis and this diet stopped all that. I'm not saying by any means you will have these problems, it might just make life more manageable while your pouch adapts and then you can add foods back and be on your way? I know you don't want to be doing UCesque extreme diets post surgery, but just a thought...
Posted 4/17/2012 9:40 PM (GMT 0)
I am so sorry to hear this - I don't want you to be miserable, these surgeries are supposed to be giving us our lives back not taking more away from them. I have no advice but wanted to let you know I am thinking of you.
Posted 4/18/2012 10:12 AM (GMT 0)
B'D i'm so sorry to hear this. you havnt started therapy yet. maybe that will help. prayers your way!
Posted 4/18/2012 10:33 AM (GMT 0)
I am new to this site but read your post and man, is this familiar!! I struggled with this terribly AFTER four years with a perfectly functional j pouch. MANY docs and tests later it was discovered I had scar tissue growing in the pelvic area causing awful pain and issues as you explain. I think the gastro will be very helpful here. There is so much we just don't know about, I know what you mean about being set loose by the surgeon after surgery with NO help, so don't lose hope and be persistent! I ended up having to revert back to an ileostomy due to other issues, so my problem was solved anyway! Wishing you the best!!!!
Posted 4/18/2012 1:01 PM (GMT 0)
I do not believe that tincture of opium or imodium is the answer to your problem. The problem lies within the muscles of the sphincter. Yours are lax and are not holding waste. It doesn't matter how much of the drugs you use, if your sphincter is not tight, it's not going to hold it in. You are going to be like this until you get help with physical therapy.

Sue
Posted 4/18/2012 2:23 PM (GMT 0)
Two different doctors have checke dthe muscle and said it is fine.
Posted 4/18/2012 2:24 PM (GMT 0)

Survivor11 said...
I am new to this site but read your post and man, is this familiar!! I struggled with this terribly AFTER four years with a perfectly functional j pouch. MANY docs and tests later it was discovered I had scar tissue growing in the pelvic area causing awful pain and issues as you explain. I think the gastro will be very helpful here. There is so much we just don't know about, I know what you mean about being set loose by the surgeon after surgery with NO help, so don't lose hope and be persistent! I ended up having to revert back to an ileostomy due to other issues, so my problem was solved anyway! Wishing you the best!!!!

 

 

 

Survivior: how did they discover the scar tissue?

Posted 4/18/2012 8:30 PM (GMT 0)
Scar tissue was discovered when I went to have a routine PET / CT scan because of my cancer. The scan lit up strongly and docs feared recurrence of cancer, but also said scar tissue was a possibility too. By this time pain was so severe I was on MAJOR Oxycodone and doc decided the only chance we had to relieve this was another ileostomy to let the affected area 'rest'. I woke up from the surgery virtually pelvic pain free and no cancer was found. Ultimately we had hoped to return to j pouch but learned yesterday that I have lost too much sphincter control to do this. Bummer. Considering other options. Maybe. No decision with this situation is easy!!!!
Posted 4/18/2012 8:38 PM (GMT 0)
I'm going to second the advice to post over on the j-pouch forum. I think you stand a better chance of running across someone who ihas experienced this issue over there.

I'm really sorry you are still struggling. :-(
Posted 4/18/2012 9:24 PM (GMT 0)
I think the main thing that will help me is the physio, too bad it doesn't start until May 7th, but I'm lucky I could start the appointments that early, they are usually booked up like 2-3 months in advance and I got in on cancellations.
Posted 4/19/2012 2:22 AM (GMT 0)
BD,

Sorry you are having issues. I am too; my stoma is swollen and closing over may need a re-do OH GOD, but at least am finally being listened to about it after an easter sbo. All this started when the stoma swelled almost shut March 11.

Anyway, why are you having to strain? You have to keep the poop firm enough to not leak from the jpouch but not too firm to not get constipated? Do I have this right? Anyway, sorry to hear. Hope all improves with time. Rosemary
Posted 4/19/2012 2:24 AM (GMT 0)
Does scar tissue show up on a PET scan? I have had CT scans and nothing showed and I think I am loaded with scar tissue. Is the PET more sensitive?

This could be revolutionary to have a scan that shows scar tissue. Rosemary
Posted 4/19/2012 6:12 AM (GMT 0)

esoR said...
Does scar tissue show up on a PET scan? I have had CT scans and nothing showed and I think I am loaded with scar tissue. Is the PET more sensitive?

This could be revolutionary to have a scan that shows scar tissue. Rosemary


I am not real sure of the difference, the CT scan showed a thickening in the abdomen/pelvic area while the PET, done at the same time, lit up which means there is actively growing tissue there. It is supposed to catch cancer recurrence which is what my doctors feared. When further testing showed I did not have cancer recurrence doctors told me it was more than likely scar tissue causing this CT finding. Ileostomy surgery confirmed this. I have always been told too that scar tissue doesn't show up on scans. I have often wondered if the PET might be to some advantage in this regard, but believe with me it might have been a 'lucky guess' perhaps?
Posted 4/20/2012 3:40 PM (GMT 0)
I am starting pelvic floor physio with biofeedback and electr-stimuolation on May 7th. I got this perscribed for me by my house doctor, not the GI. Do I need to talk to the GI too? I am confused if there is anything lse I could be doing for myself or if the physio is pretty much the only help there is.
Answers?
Is there going to come a time when I can stop wearing pads?
Posted 4/20/2012 7:09 PM (GMT 0)
Nascaron, I don't have a stoma anymore, I'm not talking about leaking bags, I had my takedown last month so it is a live broadcast.
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