I have been 'lurking' around this site since I was released from hospital following my total colectomy in March 2007.

I see lots of posts that seem useful but the biggest scare seems to be, "Everyone is different, what works for one, may not work for another". To this end I seem to be constantly chasing to find what works for me. My symptoms well:-

I will have a good couple of days where by I feel normal again, couple of BM's and maybe one at night, I will get over confident and when I feel bad again I am scared to stand up or even get out of bed because I cant bear to feel like I need to go all the time. I can walk around and feel normal if I use my muscles to avoid needing the loo however I want to be able to walk around without needing to keep it in.

There are also occasions where I will need the loo, sit there and next to nothing comes out but a little of bit of what feels like lava it is that hot and painful. I will then finish, stand up and will need to go instantly again with the same results. Add to that the itching and tickling feeling that is so violent its painful and I am at the end of my tether.

I want to be like you guys and not be scared of standing up in case I need to go and if I do need to go I want to be able to be in and out and not need 20 minutes sitting down to stop the pain and itching. The only thing I can link to when I felt well is when I was taking quite a lot of Tramadol following surgery, it made me feel good and seemed to stop frequency. Obviously I dont want to fall into the trap of taking too much.

I am due to see my Surgeon at the end of July for my 3 monthly check-up. I can't cope with the way things are and if they don't drastically improve I am likely to have a break down if I am not close already. Please help.

My other meds are loperamide 3 times daily and warfarin due to thrombosis.

A lot of the meds you all take maybe unavailable or called something different in the UK. What are wafers?

Thanks for everyones advice. I took in what everyone said about exercise and medications and decided to go see my GP armed with a list of your suggestions. I went on my bike to start my exercise doing Kegals on the way.(wonder how long I will keep that up?)

Anyway I came out with a prescription for :-

Fibregel - Metamucil I think you guys call it
Codeine - Doctor agreed things were much slower on it
Loperamide - Been on it since surgery

I ended up with that much I had to push the bike home. I feel much better about things and am going to take the fibregel after weekend as I have a wedding and awards evening to attend on Friday/Saturday.

Just one more question - has anyone had a reaction to codeine. When I took my first dose last night after 2 weeks without it I became massively itchy all over, its that itching that makes you go incredibly hot as if you have had a reaction to a pet or something.

Anyway heres hoping Metamucil works for me. Keep your fingers crossed.

This message has been edited. Last edited by: Manchester,

Keep in mind that the first few months after surgery are going to be the worst. We've all felt that urgency, but it usually subsides after a few months, when our bodies get used to the new plumbing. We are all here to support you, and trust me in saying that we all have problems, whether in one way or another. Stay strong, your symptoms will get better.

I think what you're describing is normal. For the first several months I felt a "pressure" to go quite often and it was uncomfortable. In particular I remember that standing up increased the "pressure" against the sphinters. But, it has gotten better over time and I can honestly say that I now only feel the "pressure" feeling when I actually do have to go.

It takes some adjustment, but you will get there. My only suggestions are to try some immodium and fiber to bulk things up and hopefully give your sphinters a little bit of a break and to be faithful in doing your kegels to strengthen those muscles.

Rick

Manchester,

We feel your pain - have been there and done that. It sure feels like you reach the end of your rope, doesn't it? As trite (and unhelpful) as it sounds - hang in there and take one day at a time. Time is your #1 friend since your insides healing up over time is what really has to happen for major change to occur.

Here are some thoughts on how to make things better:
1. Using narcotics to slow relieve things every once in a while is not a bad thing. There were points along the way my butt burned so bad, I popped a percocet and it brought pain relief and slowed things down so I could get sane again
2. Taking a good probiotic helped me more than anything early on. Get some good bacteria in your system - via yogurt, supplements, or whatever
3. Try some tricks to reduce gas. Take Gas-X (simethicone), eat slowly, and try drinking 20-30 minutes after eating. Reducing gas will reduce the pressure you feel
4. Talk to your doctor about ways to still the spasming sphincter. The urge you have may be due to your sphincter and associated musles spasming. Time will relieve this, but there are some anti-spasmodic drugs that can help
5. Fiber may or may not help. Metamucil makes fiber wafers that are VERY helpful in slowing things down. They may or may not be helpful at this point, but they are worth a try. I found early on that fiber was not helpful to me - but it sure is now

Remember to keep trying new things. What doesn't work now may work in a month or two. Your body is still healing and adjusting and will for some time.

It does get better.

Manchester:

DO hang in there; it really should begin getting better shortly. In the meantime, some thoughts which might help.

First, are you doing kegels? If not, then start immediately; they help with the urgency issue ENORMOUSLY.

Second, watch your diet and keep it very mild for a few days to see if that helps. Some people adjust to "real" food a lot slower than others. I can eat almost anything I want to now (takedown October 2005), but it took me a long time to get to that point and there are still days where I have to stick to a very mild diet.

Third, watch your liquid intake. This is tricky, because you do need to drink a lot to avoid dehydration, but too much will add to the urgency problem. Drink water when you're thirsty, try "filling" beverages like milk (if you can tolerate it), and you might want to experiment with gatorade/fruit juice -- just a tiny bit, as too much sugar will definitely give you the runs. Stay away from caffeine and really sugary drinks.

Fourth, "wafers" are Metamucil wafers. Do you have Metamucil in Britain? It's a fiber additive that you mix in water; most people think of it as a laxative, but it is actually a regulator. Many people on this board swear by the wafers, which are a bisquit form; I use those when traveling (no mixing, smaller package), but find them too expensive for daily use. Not to mention that I get tired of the apple cinnamon taste after a while! I use regular Metamucil powder, with a bit less water than recommended, about half an hour before lunch and supper; it thickens things up and definitely helps with the urgency.

Hope this helps,
Gin

Thanks all. What you all have replied has helped and like you say I just need to be patient.

Where do you all buy your meds from and do you think they would ship to the UK?

Perocet? Is that a painkiller
Metamucil? Where can I get this - seems the miracle cure for some.

Kegals? - Ok, I was never told about these and have just done a quick search on them, guess I will have to start. Will it be a negative effect if I havent done them till now?

Many thanks all

This message has been edited. Last edited by: Manchester,

Manchester, I am right there with you. I am just about 4 months post total colectomy and j-pouch surgery. I have good periods and bad, I don't sleep a whole lot and have little energy. I just had a bad period where I was going all the time and had increased urgency, I found the culprit to be too much caffiene I think.

I too hope for things to get better, I don't have much energy to do much. I don't feel like doing things around the house, we have a new baby, and my wife can only do so much. She does not completely understand what I am going through either. I can't give my full effort at work. I start my work day later as I can generally get some sleep between 7 and 8 in the A.M. and don't want to give that up right now.

I will put you in my prayers, keep plugging away, and read up on this site, plenty of good suggestions and information.

Percocet is a painkiller.

Metamucil is a fiber laxative. You might ask some of your countrymen how to buy this or the equivalent over there.

Kegals - squeezing your butt cheeks, essentially.

Hi Manchester,

Any pain med with codeine in it will help to slow your gut and help with the pain. Dihydracodeine worked for me but you need to get a prescription from your GP. Try over the counter codeine first to see if that helps. Don't take anything with ibuprophine in it as this can harm your j-pouch. DG's (co-codamol) are another pain med that might help. See your GP, he can help with the pain side of things.

Metamucil is just a psyllium husk usually used as a laxative but taken with less water than it recommends has the opposite effect on a j-pouch so try that to help thicken your output and take the heat out of your toilet visits. You can get this from most chemists or health food shops, or you can ask your GP about getting a prescription for fibergel, which would be cheaper than getting it over the counter. They don't do the equivellent of metamucil wafers (biscuits) in the UK which is unfortunate because they do work better than the powdered form.

Which hospital did you have your operation? I had my j-pouch surgery done at the John Radcliffe in Oxford and they were very specific about doing kegal excersises. Don't worry though you can catch up by making sure you do them as often as you can rememebr throughout the day. Clench your buttocks together as if you were having to hold in both a bowel movement and a pee, hold for 10 seconds and relax. Repeat 10 times. This will really help with your control and the feeling of urgency.

As everyone else has said, you are still in the adjustment period and things will improve over the next few months. Hang in there, you really are doing better than you think.

Shell

Shell

I had my operation at Rochdale Infirmiry near Manchester.

A surgeon named Mr Afifi did my operation and was fantastic.

I understand all the posts and take them in, but then I go to the loo and lose all hope. I just cant cope with the way it is at the moment. I had a good day at work today but then when I came home and ate I needed to go urgently, sitting there for an age and I never feel empty. Then I go sit down itching like mad and needing to go again.

How long was it before these feelings passed for everyone else.

Out of interest does everyone have the same "cut" with the J pouch?:-

http://www.rob.digi-base.net/fig/misc/me.jpg

Dude - ouch! That picture looks so painful. No, we don't all have that incision (man, you are making me feel so lucky). I had a 3-step that was: laproscopic, hand-assisted lapro, and open for steps 1-3, respectively. So, I have 4 small incisions (1/2 inch) on my abdomen, a 1-2 inch horizontal scar into my belly button, and a 4 inch horizontal scar 1-2 inches below my waist. Nothing like that! Yikes.

What you are going through is maddening. I'll bet you aren't getting much sleep either. I was about 3 months out before I felt like things had really improved. Try some of the things mentioned and don't give up trying. Some of them should show you improvements that will give you hope.

Hey man, that's my experience exactly! That itching can drive you Mad! Yeah, I thought things were progressing nicely (hadn't had to change the sheets that morning) so I made plans for a road trip only to have everything get worse again. My surgeon wasn't too worried about it and suggested loperamide. I had my surgery in March too (2nd) so we're pretty close in time. The lop was like magic man. Even after a night out drinking I can control when I have to go. I found the lop in a generic form at Costco here in Canada. 82 tabs for around $10. I also noticed improvement after a workout. I can only go hard for half an hour right now but it seems to help. Who knows eh? I know we're new at this and will most likely have another hurdle or 3 to get past but I feel like the uphill part is over. Think positive man. Oh yeah, and use the wipes that kids use when they're toilet training, Awesome! Lol, stay healthy eh.

I have basically the same incision line, except I have the stoma scar too. And no, not doing kegel exercises isn't going to do anything bad to you. I never did them and I was fine. I didn't even know about them. All they do is give you more control, however, day to day, you are doing them without knowing it by holding it in.

Hi Manchester,
Taking probiotics and using psyllium (the basic ingredient in Metamucil) helped me enormously. Look up my recipe using "DIY Metamucil" as the key word(s). I make these all the time as we can't get Metamucil in Norway either. These things help me immensely. I've tried using psyllium capsules (no use at all) and mixing the husks into yoghurt or sprinkling the seeds onto muesli, but the homemade oat and psyllium wafers are by far the most effective. Not only do they slow everything way down, but they eliminate butt burn. You know, it's still very early days for you. I know it's easier said than done, but hang in there and keep trying different things. Once you crack your own personal code and find what works for you, you'll be able to enjoy your new body. Good luck!

Wow! I read your post and thought I had wrote it myself. I had my takedown 2 weeks ago today and feel like it's the end of the world. I can't stop thinking why did I do this. The urgency, pressure, spasms, burning, itching, I can't stand up, I go to the bathroom and cant' wash my hands with out haveing to go again. I get up on average of 6 times a night to go. If I do sleep I have an accident. I had to go back to work yesterday and am so tired and weak I can't function. I do heat and air and refrigeration work for a school system that envolves alot of up and down and moving and I can't even get out of my van. If something doesen't change I'm gonna go crazy. I know that everyone says time will change things and am thankful to all I read on this site but right now I just don't see the light at the end. Manchester, my thoughts and prayers go out to you and I look forward to reading your post in the future when you talk about how well things are going. Jerry