Still adjusting 7 months after take down?

Your transit time is probably not 15 minutes. This sounds like an exaggerated gastro-colic reflex. That is where the presence of food in the stomach signals the intestines to increase peristalsis (in order to make room for more food). I'm 20 years post op and still have that. However, I not only maintain my weight, I tend to gain too much !

 

You can take as much as 8 Imodium a day, so don't be shy about that. But, 8-10 BMs a day does not sound that bad. I go probably 6-8, so not that much different. Lomotil may work better for you, or you may need opiates. But, if it is combined with urgency, cramping, bloating, etc., that is not OK. For me, those are indicators of pouchitis or bacterial overgrowth. Pouchitis has been ruled out for you, so probably bacterial overgrowth. 

 

You can try adding a few doses of Pepto Bismol (I like the caplets) to see if that helps, but you just may have been on the wrong antibiotic. The most common choices are Cipro or Flagyl. Other choices if those do not work other possibilities are docycycline or Augmentin.

 

Last, but not least, pouchitis symptoms without pouchitis or improvement with antibiotics may be IPS (irritable pouch syndrome). Just like IBS, low dose tricyclic antidepressants and antispasmodics are useful. The Enteragam is for IBS, but I am not sure how effective it is without a colon. I only skimmed the info. 

 

Oh, and yes, I would see a GI. Many people do see their surgeon long term. But, if you are having long term maintenance issues, a GI may have more time and patience for it.

 

Jan

I was feeling the same as you.
When I looked in the mirror I cried.  I was 58 and I was a skeleton. 
Have patience.  Jan has good advice.
It will get better.
I found that chicken was no good for me.  Everytime I ate it it caused problems.
I was so weak and tired all the time at 7 months.  I had open surgery twice.  That is very demanding on your body and takes forever it seems to really get back.  But you will.  Progress is so slow and hardly noticeable.... But it was progressing.  I am so much better.  I never thought I would feel better... Stronger.
Nit where inwas but it may be years before I go to there.  But I have time.  I will wait.
Good luck to you.  It will get better.

I agree. A GI who is knowledgeable with J pouches is great to have. I'm a nurse; surgeons are proficient but FAST, a medical GI is likely to spend more time with you, sorting things out.

I'm 24 years post-op and go 4-6x a day, but don't get that rush feeling. I did find some triggers that make me bloated by eliminating and following a FODMAP diet. I avoid them so as not to feel that way. Apples are a huge bother to me, any form. Strawberries don't bother me an iota.  Things like that.

Thank you to those of you that responded to my plea for help! Yes, I tried Lomotil and it gave me severe headaches for some reason and that is why I am on Imodium. I frequently take 8 or more a day but as I said it is like putting a plug in and does not stop the severe gas pains, bloating, rumbling and discomfort that takes place every time I eat. And yes I have urgency along with the diarrhea. There are times I don't leave my house for days because of the uncertainty of my GI system. I also have waves of rectal pain that may be pelvic floor problems or nerve issues. The degree of that pain is almost intolerable at times. Just one more thing I did not expect to be dealing with at this point in my recovery. I do take Percoset and will give PeptoBismol a try. Thanks.

From what you describe, Pepto Bismol probably won't do much. A different antibiotic probably would. You are probably sensitive to the atropine in the lomotil.

 

Jan

In addition to all of the advice above I'd like to suggest a few more things.  Loperamide is the prescription version of Imodium and it works better for me.  It is in gel caps and gets into my system sooner the the OTC version. It isn't pleasant to take too much making your BM's harder to pass.

 

For gas I found that "Super Digestive Enzymes" made by the brands Solray or Life Extensions worked well and much better than Bean-o. I took them before most meals as gas pains are caused by many different kinds of food.   They are also in gel caps.  I love gel caps for everything like that.  I even used gel caped Metamucil (generic) as I can't stand drinking it. 

 

My nutritionist suggested I use PlantFusion which is a all vegetable based protein powder.  It is great as it is hypoallergenic so anyone can use it, soy free, gluten free, lactose (whey) free etc.  One serving provides 43% of our daily protein needs and it is better for after surgery than harsher products.  You can make regular smoothies and/or add fruit and veggies to it.  I used bananas and unsweetened almond milk with ice and peanut butter in my blender when I first started drinking them. I also suggest Greek yogurt.   Since you want to decrease your bathroom trips I'd suggest the banana/peanut butter one with the chocolate flavor. You can buy it in health food stores or order it on-line from places like Amazon and Lucky Vitamin. 

 

I had open surgeries both times.  They discovered a big abscess under my surgical incision. I went home after take down packing a large hole in my abdomen. Back then, 4.5 years ago, that kind of thing grossed me out - I got over that after packing that hole several times a day for months! I was in the hospital for 16 days after surgery #1 due to dehydration.  It may seem like your recovery isn't happening as fast as expected. It helps if you compare how you currently feel to how you felt a month or two ago.  Recovery is that slow for many of us recovering from open surgeries.

 

 

Thank you for all the helpful suggestions. I was able to find the Plant Fusions locally just yesterday but have not made a smoothie yet. I also found the Solaray brand Super Digestaway--is that the same product as the Life Extension brand Super Digestive Enzymes? My husband found them at a health food store with the help of an employee and that is what he brought home. I decided on my own to not continue with the EnteraGam as my doctor told me to do, as I had been taking it for 4 weeks already with no improvement whatsoever. He had wanted 2 more weeks of it bumped up to twice a day, and then I was to start the Flagyl if the EnteraGam was not stopping the diarrhea. I could not take the pain and confinement to my house anymore and even though it is not my nature to not follow doctor's orders, I had the Flagyl and started it on Saturday. I certainly have not seen any improvement yet and Sunday things were a little worse and yesterday was probably one of if not the worse day I have had since possibly I was in the hospital. I possibly made up to 20 trips to the bathroom with urgent diarrhea yesterday. I lost track on how many Imodium I took but it might have been around 10. Dinner last night was just rice and then just pudding after that. Needless to say I was exhausted last night and still am. The only food that I can feel fairly confident about keeping "in" me is cream of wheat cereal with some almond milk on it. I try to have that every morning. It's kind of thick like old wallpaper paste but that is fine with me. Now I am wondering if it is the Flagyl that is bothering my stomach as of course diarrhea is listed as a side effect, along with a long list of other things which may or may not ever happen, but since I started the Flagyl on Saturday now here I am going downhill with no real change in my diet or anything else but that I am wondering. Did anyone else have problems with that antibiotic? Is it something that will possibly go away if I hang in there for a couple more days? I did not try making a smoothie with the Plant Fusions yet as yesterday I was so miserable I barely had the energy to get to the bathroom, get back to the couch, make sure I was drinking water; just didn't even know where to start with making a smoothie or if I had something to mix with the powder. I have taken the Super Digestaway last night and this morning, not much help yet. Took the Flagyl this morning, it is a 250mg pill, 3X day. So far I'm not doing too bad but have lots of rumbling. Is this a typical dosage? 

I am completely intolerant to Flagyl, but it's not diarrhea that gets me: it's intractable nausea and vomiting. I just vomit and vomit, and have horrific stomach pains with it. Have tried 3X in life to take it with the same result every time.

I generally take Cipro with issues.

Yes, you may be intolerant of Flagyl, or it might be the wrong antibiotic for you. In addition, the EnteraGam may have been doing more good than you realize. Since you stopped it the same time as starting the Flagyl, hard to say which had the most effect. But, I would suspect the Flagyl first.

 

Have you been tested for C. difficile or CMV infection? Either one of these wuoild cause diarrhea that is severe and not sensitive to antibiotics. However, many cases of C. difficile respond to Flagyl, but at a higher dose.

 

I would call your doctor back and report your new findings.

 

Jan

Just a follow up to my posting. I hung in there with the Flagyl for another day to see if the extreme diarrhea would continue and it did not. I have returned to what I now consider my normal routine of frequent urgent bathroom trips so it was evidently not the Flagyl that caused the severe diarrhea. Who knows what it was as my diet is not that varied. I lost another pound, which may not sound significant, but it is to me and I called my surgeon's office and left a polite but firm message for his nurse asking her to please make an appointment for me at the GI dr.'s office that we had discussed at my last appt. I had felt like my surgeon said, yeah we can do that, when my husband suggested making the appt with the GI dr, but then my surgeon kind of continued to go ahead and tell me to try to up the dose of my current med (EnteraGam), which I had just told him had not done anything for me after using it for one month, and then switch to the Flagyl after two weeks. While I have confidence in my surgeon, I feel that whatever problems I am having now might be better solved by a GI doc. So thankfully I received a call back with the appt info, also I should receive a packet in the mail with papers to fill out. I can only hope this is a step in the right direction in returning to some type of a new normal. The appt is still 2 weeks off but you have to start somewhere.  Thanks everyone for your advice and suggestions. 

I have not posted in awhile as I have now seen the GI doc that my surgeon sent me to and have had some changes made to my meds. Actually saw his nurse practitioner first as that was first available appt. She wanted me off the Flagyl! OK, she feels it is better to get my bacteria in balance with just VSL #3 twice a day. I hope that is going to be enough as I know I have read on here that so many of you have been on both for long periods of time for the exact symptoms I have. Increasing the dosage of the EnteraGam to two packs a day (a powder) was the right thing to do, as my surgeon had prescribed but it should have been the two packs from the beginning as the loading dose she said to get things going and then I might be able to cut back to the one pack. I also went in and had a major blood panel done and a stool sample taken. And last Friday he did an upper scope, I said I did not have any reflex but the nurse said he likes to have the whole picture. Well, turns out I have moderately severe erosive gastritis. So on Protonix for awhile. Really like the GI dr as this was the first time we met him, right before my scope. When he spoke to my husband afterwards they discussed my weight and I am to monitor it closely and if it drops any before I see him next month I need to call and we will discuss possibly putting in a PICC line again and running TPN at night only.  I weigh only 82 pounds, I am a small person but this is an all time low. I had a PICC after my second surgery, came home from the hospital with the TPN and it was annoying but I did gain a good 8-10 pounds over the 9 weeks or so I had it in. I dread the thought but I admit I am struggling. GI doc looked at pathology from pouchoscopy done in late April by surgeon and said there was no sign of any pouchitis. He said he thinks I have leaky gut, probably have had it for some time and that the EnteraGam is for that. I feel like I noticed a noticeable improvement when I was on the Flagyl, thicker movements, less urgency. Now one week or so off of the Flagyl, following new instructions for VSL#3 and EnteraGam, I feel like I am having more diarrhea  and urgency back. Coincidence? I know the nurse said something like the antibiotic will cancel out the good of the VSL so we don't want it. Yet so many of you take both and I saw an improvement. Just wondering anyone's thoughts? I will continue with dr's orders and monitor my weight of course as that is crucial. I don't have an appt with him til Sept 1. Thanks. 

The erosive gastritis could be the source of much of your grief right now, so comparing to other j-pouch treatments probably won't get you very far. Once that is more healed, your digestion should improve, along with your nutrition and weight gain. Please don't hesitate to return to TPN if this takes too long to turn around. At some point you need something like that or you can never heal.

 

Sounds like your GI is doing a good job at looking at the whole picture, and not just your j-pouch, which is the right thing to do!

 

Jan

VSL alone was sufficient for me to keep pouchitis at bay for a couple of years. At that point I had to add Cipro, and various attempts to stop the Cipro didn't work for me (most people with pouchitis can clear it up in a couple of weeks and be off antibiotics for months or years). VSL has been shown in studies to work best at preventing pouchitis, and much less well at treating it. I do find that in my case VSL does a good job supplementing the antibiotics I'm on, but it's true that VSL's effectiveness is reduced by antibiotics when you're using both. With no sign of pouchitis, you may simply be dealing with something else, and the VSL alone should reduce the risk of pouchitis flaring up. Good luck!

Thank you both for your help. I also forgot to say that I was also prescribed Librax before bed for the cramps. For some reason I seem to feel pretty good during the day and symptoms seem to creep up on my as the day goes on so that by dinner time and evening I have returned to my usual pattern of running to the bathroom with frequent bathroom trips, urgency, pain, pretty miserable. And then I usually resort to some Imodium even if I haven't taken any all day!! That is an improvement however. I will watch my weight carefully, down one pound since I saw the nurse practitioner 10 days ago, hoping it is a temporary fluctuation and not going to remain that way. I will continue with doctors orders!! Thank you again for encouragement. Sometimes that is all you need!!

Hi Joanm,

 

What you just described is how my days and evenings use to go back when I was at your stage in the marathon of recovery. It sounds like you are taking the Imodium when you are in the midst of your evening trots to the toilet.  I eventually got Loperamide which is prescription Imodium. I could tell when it was working quicker than the OTC form.  It's in capsules and think that might be why it gets into my system faster.  The problem I had with the OTC Imodium was there was too much time in-between when I took it and when it started working. This caused me problems the other way as I'd end up taking too much.  I suggest you take some of it earlier in the day to help control your movements later on.  It's not easy to figure it all out and just when you think you have things working fine things change again because your pouch is maturing.  We are all different too so what works for one of us might not another.

Good Luck!

Thank you, TE Marie for your response. I too have just recently thought of taking the Imodium maybe early afternoon even when I am feeling OK to sort of head of the problem that seems to be a chronic event now. And yes you are right it takes awhile to work so I do find myself throwing more at the problem than probably necessary but there is a lag time before it takes effect. I think I mentioned the prescription form of Imodium to the nurse when I was at my new GI appt but she felt the OTC should be sufficient. I have improved and will try this approach. I am getting close to the anniversary of my first surgery, my colectomy and I really thought I would be further along than this. Sigh. Hoping I am finally on the right track. Thanks. Every little bit of advice helps.  

I wonder how much experience your GI's nurse has with j-pouchers.  Plus the OTC Imodium costs more than the prescription - assuming you have prescription drug coverage. Maybe taking it sooner will help enough.  I waited a year thinking they said that it would take that long to recover.  I ended up having cuffitis and c.diff at a year.  It is good that you are being more proactive about it.

 

Solray and LifeExtensions are both brands I've used.  The PlantFusion is hypoallergentic so should be safe for you, just in case you have any food allergies. I use Unsweetened Almond milk but you can just use water or milk plus ice if you don't have a lactose problem.  I haven't had the Enteragram but don't think there would be a problem with them together as PlantFusion is food.  You can mix fruits and vegetables in with the smoothies as tolerated. Ice and it makes it more like chocolate milk. 

 

I had IPS before pouchitis.  The treatment was antibiotics. A pouchoscope with biopsies is going to give your GI a lot of information that will help you get better.  I've had to quit taking Flagyl because of it's side effects but it works for a lot of people.  I can't take Cipro because it gave me c.diff when I still had my colon. I had to take a lot of Flagyl to get rid of it when I got it in my j-pouch.  Augmentin and Xifaxan are the antibiotics I take now.  The Xifaxan is very expensive but it's working better for me.  Cipro works very well for many people in this group.  We are all just so different so sometimes it has to be trial and error. By doing it you will eventually find what helps you feel better and gain weight.  We use to add ice cream to Ensure in order for my dad to stand the taste!  I like Atkins protein chocolate better than Ensure. Have they suggested you drink anything like that to help with your weight?

 

I know you are miserable.  We have all had bad times in one way or the other.  Keep asking questions as we want to support you as others have helped us.  It is difficult sometimes for our families to know what to do to help us.  You are going to get better.

I had UC for 20years & finally when cells were changing - did the deed in 2010- total colectomy ! ended up with kidney failure & after 2 weeks of vomitting bowel, spent another 2 weeks on tpn

 

Over the next 5 years with a bag suffered major depression & my wife of 40 years divorced me

 

2015 met a wonderful GI nurse who helped me fast track to a pouch

 

Stage one was difficult as not really enough bowel to work with & 4 weeks in hospital

 

6 weeks of badly burned skin from enzymes due to poor stoma

 

final op in may was horrible as i was all knitted up inside & spent another 3 weeks in hospital & left with a gaping hole for weeks

 

right now I am 12 weeks later

 

going to bathroom about every two hours & my ass is on fire !

 

i am taking about 25 loperamide, plus other natural husk medications and energy shakes, but I am exhausted

 

Having lost the plot being so effected emotionally by the experience lost the lovely nurse  as well

 

reading this site I really wonder now if having the j pouch to improve my confidence in my personal life, was the right decision

 

Whatever we are all going through, it seems like a mixed experience

 

for those who it has been positive - good for you - I’m pleased it worked

 

For others I hope time heals & the op proves to work eventually

 

For me, it just feels like UC symptoms, but fortunately without the risk of dying of cancer, but feel my life has been destroyed by the condition

 

Was a confident, strong willed, decisive professional with a happy family, now really just a shadow of who i was emotionally

 

the physical aspects of these procedures & the disease are really challenging

 

but take care not to let the emotional & mental strain ever make you lose your way

 

wishing you well