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21 replies

short story, and questions. Meds/Diet

T TJBMember
Hello all.

Been quite awhile since I have been on here. I had my UC diagnosed in 2005 which led to an emergency full Colectomy in Feb 2008 and J-pouch procedure & take down over the next few months in 2008.

I am a sales exec with an IT company and I travel a few times a month both in the states and overseas which has its challenges (small crappers Smiler, late business dinners etc etc. In any case following my surgery I remained on heavy duty pain killers for many years due to some nerve damage from one of my surgeries (long thorasic nerve quit firing, that coupled with some serious back injuries from my mis-spent youth) Through all the BS I was honestly able to hold my high stress job together as well as my family through all of the challenges that come with narcotic dependence. I decided to quit counting pills as I could see that they would eventually be my end, I could tell they were affecting my heart health and they made a once health nut a little lazy and depressed at times. They were a double edged sword as on the one had they slowed my digestive system down tremendously but life was what life is on those types of meds. So I took a week off, explained to my wife my intentions and sent the family to Florida while I went through what I needed to go through. I wont go into the details but lets just say that for a couple months I suffered but held my head high and moved on and I did it on my own with only the support of my wife and one or two close friends in my circle of trust.

So fast forward 7 months and I now exercise regularly and have lost a few pounds and my resting heart rate is back to a better place. HOWEVER - I go to the bathroom ALOT and I have had issues with night time incontinence quite often. Imodium doesn't seem to help as I go from watery diarrhea to some days going every 5 mins 10 times after a small lunch. It is nuts to try to control with no rhyme or reason.

Also I have always used konsyl every morning because if I don't take it I get really bad, bad gas (bathroom), pressure on my rear with small discharges (bathroom). The konsyl seems to help a lot and I am thankful I found it but I need dietary advice as I am really struggling being off the meds that slowed my system down. Not going back to that life ever as I am past all the bad things that come with getting off of them.

Any advice would be great as every day is more of a struggle dealing with "my system".

I have considered consulting a nutritionists to see if they may be able to help.... has anyone gone that route?

thanks in advance for the advice.
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TE MarieTE MarieMember
Congratulations for getting off of narcotics. I'm assuming you are no longer in pain, which is great too. Saving that I'm wondering how many Imodium you are taking a day and also am thinking maybe you should get a prescription for Loperamide (Imodium). It is in capsule form and gets into my system quicker so I can tell better if I need to take more. I sill take metamucil capsule form sometimes too. It is difficult to factor it in but I just guesstimate based on the amount of fruit in my smoothies and thickening foods like breads and pasta type foods I have daily. That said I still have problems getting it right all the time.
Last edited by TE Marie
suebearsuebearMember
You can start from scratch and keep a food log to see what foods are giving you a longer transit time. For me, protein really slows things down, but this can vary from person to person.

For incontinence, if this is only at night, it most likely is a weakened sphincter muscle. All muscles need exercise so doing kegels, 3 sets per day, can reverse this problem. I'm thirteen years out from surgery and every couple years I find I need to do a day or two of kegels to tighten things up. It works.

Congratulations on facing your addiction and getting treated. You're in a small group of people who have conquered pain pill addiction so I commend you for your effort. I'm confident you can turn these new problems around with some diligence.

Sue Big Grin
Jan DollarJan DollarModerator, RN, retired
In addition, I'd like to add more info on Imodium. Are you taking it randomly, or regular doses every day? For chronic diarrhea, you need to take it consistently, not randomly with varying doses and time of day. You can take up to 8 a day and it is is quite safe. It is like the GI effects of opiates without the central nervous system effects. It should work for you if opiates worked. You just may need a higher dose. Also, Imodium is known to improve sphincter tone, so it could help with nocturnal incontinence.

Diet-wise, people seem to get the best results/function by avoiding sugar specifically, and carbs in general (particularly grains). It takes months to see a consistent change in function in response to diet changes.

Also, do not assume this is all due to the lack of opiates in your system. The opiates may have been masking pouchitis or bacterial overgrowth. A short course of Flagyl might set you on the right path.

And, yes, congrats on your personal victory!

Jan Smiler
T TJBMember
All great info and sincerely appreciate the feedback. Back at the airport today heading east and hoping to gain a bit better control over all this or at least head in the right direction.

Something that I randomly experience and that I am dealing with right now is extreme pressure, painful at times on the rear end and when I hit the restroom I have just a small BM that is mostly liquid. Then literally 10 mins later the same. Like I said this comes and goes but when it is full on like now it can last a couple of weeks. Then all the sudden everything is more Normal (as normal as it can be). What causes this?

Also on the diet end of things I would be interested in hearing specifics of what you eat in a day from some of you that have this figured out.

Again thanks for the feedback as I greatly appreciate it.
T TJBMember
Things are progressing in the wrong direction and I just had (am having) a horrible night. Severe incontinence, horrible stomach issues (that I have never had to deal with) and more BM's that are watery mucusy nasty stuff more often.

This is a first for me. Stomach ache wont go away whether I eat or not no matter what I eat.

Anyone have any idea what might be going on? Now I am out in DC away from home with a very busy schedule this week and I'm not sure what is going on. I don't even know what pouchitis is or what the symptoms are so looking for some feedback...
Scott FScott FMember
Pouchitis is a common J-pouch complication. It's just inflammation of the pouch, and what you're describing sounds like it to me. It's usually taken care of with 10-14 days of antibiotics (usually Cipro or Flagyl). The good news is that the medication often provides relief very quickly, usually in a couple of days.

You could also just have an intestinal virus or something else.

I first developed pouchitis about six years after my surgery. Good luck!
A AnushkaMember
This sounds like exactly what I experience. I've come to learn that for me it's one of 2 things:

1. Usually it's gas building up, creating sudden and intense cramping and pressure in my lower pelvis/rectal area and creating a feeling of urgency. Often, I can't release it. And going to the bathroom results in little to nothing in terms of stool output. I've recently discovered that if I go lay down immediately flat on my stomach and press my fingers into my lower abdomen, I most often can release the gas. Obviously, this isn't possible all the time, and the pressure can be so uncomfortable and irritating.

2. Sometimes this is all complicated by what I think is a spastic, inflamed or irritated pouch or cuff. Again, feelings of urgency and involuntary contractions to bear down, but little to no output - like dry-heaving from the bottom. It's awful, because the powerful contractions resulting in bearing down really hard creates trauma of the anus, which leads to horrible butt burn.

If anyone has more insight into #2 above, I'd be grateful. I'm on Rifaximin now, but still struggling a lot. Will try canasa for the first time tonight...
T TJBMember
I have experienced both of those symptoms as you described however this is quite different as the stomach pain is so severe I haven't slept. I started antibiotics yesterday and I hope that will clear things up for me. I took the day off and no plans for the weekend so hopefully by Monday I will be running hard again.

I am thankful for this site. It helped me a lot in 08' when I had my procedures to know that I wasn't alone in this struggle.
H hichikMember
Hi, You really, really aren't alone, in fact, it sounds as though you have an inflammatory disease, or did you think that you'd be rid of it just because you'd removed the hardest hit part of your bowel. The more I live and learn I have come to understand this thing called IBD - I'm probably the oldest pouch on the board, mine was created in London, by the man who invented these operations, Sir Alan Parks and I have had a j-pouch (Parks Pouch) since 1982. I'm not sure I'll be able to keep it though, because it's perforating round the cuff and I've already got one fistula, and maybe another... My way of dealing with the consistency of my stools has mainly been to kiss all milk products goodbye forever!!! I don't eat meat or fish so that makes me pretty much a vegan (I'm willing to have an egg once in a while). Having cut out the two main food groups which are considered inflammatory, I've managed to make a better bowel evacuation routine. I suggest foods with high fiber content, cooked soups, vegetable dishes, I do a lot of Tahini (but the humous can make you gassy, so wait a while till your pouchitis has subsided) - mashed potatoes and fries are OK, but watch out for too much oil. Light fish, pasta (keep away from tomato products, they sting on their way out. Avocado isn't great for me either. Tuna fish is good on full rye bread, whole wheat bread etc. I eat lentils, a ton of rice (not white, it's not as tasty nor does it have any nutrition in it).
Having said all this, the pouch is happier with vegetarian/vegan diet, but I also have to have the odd round of antibiotic and Cipro, 500 mg twice daily for a couple of weeks till feeling better (it works immediately!) then halve the dose and stay on it, especially if you have to travel. I came off it almost a year ago and kept to the vegan diet (except the occasional egg, sometimes fish) and all my blood work improved dramatically (!!!) the reason being that when the pouch isn't inflamed, the gut can actually absorb more nutrients from the food, the pouch is an indication as to whether your diet is inflammatory or not. Anyways, my father died three months ago and naturally I was extremely upset and lost my appetite and ate to little and ended up with blood in my urine - who knows why, so I went back onto the antibiotic and feel better. I'm staying on it a little while because it's summer and we may want to travel with the kids somewhere and the Cipro is like a wonder drug for me. BTW, I'm allergic to Flagyl. Hope this helps...
T TJBMember
thanks HICHIK, actually that is great info and much appreciated.

I travel constantly, almost every other week (in DC right now), which can make diet choices a bit more challenging as I am not eating out of my fridge but out of restaurants. However you can still make good decisions about diet depending on the place.

Hearing about everyone's diet interests me as some say they stick to high protein and others (like you) seem to work better with a mostly Vegan diet. But everyone is right in that you need to try different things to see what works, I just have not taken the time to really do that and see how much better my quality of life could be with a better diet. I have been lucky up until now as I really never had too many issues other than when I do things I know I shouldn't. like have a few too many beers on a hot summer day or go for the hot wings when I know it will likely cause a bunghole fire on the way out. I do know that the konsyl psyllium fiber I cannot do without as it seems to assist in soaking up some of my dietary issues. I will continue to live and learn I suppose. I am ready to be over whatever I am dealing with right now.

Has anyone consulted a nutritionist? I have considered going that route to see if they might be able to help. Just curious.
Scott FScott FMember
Well, at least it can't be appendicitis, since we don't have an appendix...

Some antibiotics can cause a significant bellyache - for example, doxyxycline made me miserable for a few days and then eased up. But a bad bellyache can also be significant. Have your other symptoms shown any improvement? Is this sensation brand new?
T TJBMember
I have had a stomach ache since Wednesday and it is getting progressively worse. It actually is starting to feel a different kind of tender right below where my illio was (right front belly).

Bad stomach pain.

Ate just a little bit this morning but have had nothing but liquids since with only a few BM's. It's strange as I had some salad yesterday and I normally pass it quickly and do not digest much but haven't seen a leaf one...
Jan DollarJan DollarModerator, RN, retired
Uh oh! Now this is sounding like an obstruction. With your pain now localizing to your ileostomy site, and a big slow down of your gut, it would seem that the pieces are coming together.

The ileostomy site is the most common site for adhesions that cause obstructions. If the pain continues to worsen or you develop vomiting, you need to call your doctor. Go to the ER if it is particularly bad.

Otherwise, hold off on solid foods until this breaks loose and drink liquids to stay hydrated and to help get things moving. This is not because you ate the wrong food, but just one of those things that can happen.

Jan Smiler
T TJBMember
All good news, no obstruction and quite honestly no real answers. Did a CT scan that came up negative for obstructions and my bloodwork was all good.

Pretty much the doc told me what my kids doc seems to always tell us when they can't find anything. It could be something viral (and / or some latent food poisoning). Told me to continue the antibiotics and they gave me some zofran for nausea and said to follow up with my GI doc so they can run further tests when I get home.

I am glad I went in as I have never had symptoms like this and I thought it best to err on the cautious side. I am sticking to a mostly liquid diet for now and I am going to get up and get moving today to see how I feel.

Thanks for all the answers and support, you guys have been great. If my GI doc finds anything when I get home from this trip I will let you know.
Jan DollarJan DollarModerator, RN, retired
Often, if there is a partial obstruction, there will be nothing visible on imaging. It certainly is possible that there was a "perfect storm" of food poisoning with some accompanying partial obstruction; making this worse than either thing on its own. Glad you are feeling better and this did not escalate into a surgical emergency.

Jan Smiler
A AnushkaMember
I had a partial obstruction that didn't show up on imaging. I found it somewhat irritating that my doctor suggested food poisoning or a virus. It was nothing of the sort. They key for me in recovering was to maintain a liquid diet for a good week or so, starting with true liquids then full liquids (yogurt, puréed foods). I made the mistake after being discharged from the hospital of eating regular foods 2 days later at home. I was writhing in pain again that night and throwing up, debating whether to try to ride it out or go to the ER again. I rode out the cramps and stuck to liquids/full liquids. After a few days the culprit food (kale, brussel sprouts) from the week before made its way out. I had read on this forum that this is what to expect and low and behold it played out that way. Thankful for this forum!

Good luck recovering.

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