Need advice on ileostomy decision

Dear Vanessa: I'm so sorry that your range of troubles with your BCIR have made you unhappy. Now I don't have FAP and I think that alone would be a scary disease even if your pouch were working well since there might always be, way in the back of your mind, some concern of the disease popping up somewhere else. I also think you've been a real trouper in handling so many problems from c. diff to abcess, etc.

I'm old enough to be your mother (maybe grandmother if I had started very young!) and I am giving you the advice I would give my daughter. In fact, in other circumstances, I have given my daughter just this advice.

Before one of my surgeries, just in case I died from some snafu, I wrote a list of advice points for my daughter who was about 20 then. It had a whole range of ideas, most about living one's life but also some cooking tips, fashion tips, gardening tips, etc. We call it "the peanut list" because I told her to use packing peanuts under the soil of a big pot to make it lighter and easier to move around. She laughed when she read it.

One of the more important bits is: "When possible, keep your options open." Keeping that idea in mind, in your place I would choose the loop ileostomy (if I understand correctly) and keep the resting BCIR in place while it heals and your issues of CDIFF and the abcess are addressed. Presumably at that point you will feel healthy and I hope could make a permanent decision between living with an exterior vs. interior bag.

If the outside bag distresses you, then you could choose between the BCIR and K again, but this time with real knowledge of life with an external bag/pouch. Lots of people on this site have chosen to go back to the outside bag and most are relieved by the permanence of their decision. You are strong and you could handle it, especially if you felt healthy with it.

My hope is that you will feel healthy and strong when making the next decision that may affect your daily life for a long time to come.

Whatever you choose, your friends and family and those of us on this site will be rooting for you.

quote:

abcess

The abcesses aren't related to my pouch at least. It is where my rectum was removed so liquid just accumulated. That is good, at least...The current one I have is very small like a marble so we are just monitoring it. The one I had cleaned out started out this way and turned into a golf ball that hurt so bad I had to go to the ER. And yes my disease does grow in other places. I formed a large polyp-tumor in my duodenum with severe dysplasia but for 9 months now I have not grown anything new and the dysplasia went away.

The gas and bloody-churning guts is what gets to me. The pain I can at least mask with meds but man the gas moves my bladder around as if I have a small child kicking it like a soccer. My spinal chord feels like it is moving when food goes down my guts. I am just tired of being tired and in pain. I guess a temporary would be ideal. I am just nervous if the pouch itself is causing the issues and I leave it in and have a temp ileo, I will then have to go back and have more surgery. Ugh it is all mind boggling. I had the BCIR in the first place to hopefully avoid more surgery, like the 3 step jpouch I was considering.

C.diff is a nasty nasty thing to get. I believe I have had it since my surgery. I was put on Cipro and Omniceff for a whole year and a half pretty much, that is the WORST to be on and causes c.diff. I face still fighting c.diff so I wonder if I am trading a current issue for possibly more issues with an ostomy. When Ashburn gets back from vacation at CC I will talk to her more about it.

I also can't afford to be out of work long. I just got a new job 3 weeks ago and I can't afford to lose it. So hard. I keep going through jobs like brands of antibitoics!

Vanessa....I'm sure I speak for all of us here when I say we feel for you. I think your perspectives are really right. If I was in your place, I would opt for a temporary external bag, with the possibility of reconnecting to the pouch once the c diff is gone. With all the issues I've faced it still is better (for me) than was the external bag. I am new to the CC as Stanford discontinued their kp service, but my impression is that Dr/ Dietz and Dr Shen are terrific and together with the stoma nurses should be able to give you some good insight. Whatever you decide, you should make a decision; resolution always seems to strengthen me...I wish you the very best

Vanessa,
So sorry that you are dealing with all of this sh-t...I know what endless pain and surgery feels like...depressing and nasty...
My first question; Where is all of that gas coming from and how can you get rid of it? Is it the antibiotics? Is it bacterial overgrowth? Yeasty pouch syndrom? Why are you creating so much gas? If that is the major source of the pain then by definition, getting rid of the gas should help to relieve at least some of your pain....I know that you have cut out most sugars and starches from your diet but maybe there is another key...
Please let me know what they have you on or doing for the gas and maybe I can come up with something to help.
Sharon

Vanessa, I also am very sorry you are having to go through such a difficult time. I know that the staff at CC are supposed to be great, but I wonder if a fresh perspective on your problems might help. I have been fortunate enough to get the help of Dr. Robert Beart in Glendale, CA..He joined the Mayo Clinic back in 1978 and has since had a wonderful career. He is very,very knowledgeable about Kpouches and because he has so much experience he can be very helpful. I had a fairly unique problem as the actual opening to my pouch had gotten too small for me to be able to intubate. This usually only happens to old timers, I had my surgery done in 1975. I talked to two other highly rated surgeons and they both thought major surgery would be required. Dr. Beart met with me and said he could oversee a GI specialist who could go in and widen the opening without the need to cut me open. It worked and I avoided a much more difficult experience. If you are interested in contacting him, his phone number is 818 244-8161.

Best of luck!!!!

Shen is pretty amazing. I have been scoped by him and then scoped by Dietz and Ahsburn. I have no valve issues, no pouchiitis, no inflamation, basically nothing can be seen. I have been scoped by 4 other GIs total this year and nobody sees anything wrong.

I form bacteria in my gut since I had most of my stomach removed. Only thing people can think of. I have been on candida medicine to rule out yeast overgrowth and doesn't really do anything. Funny but the healthier I eat lately the worse I feel so I don't even know if it is diet related. I did the best when I was on an antibiotic called Omniceff but that gave me the c.diff.

I just got retested and I am negative for c.diff and all white cells are normal with everything negative across the board.

Either way I can't have surgery right now since it isn't possible with my work schedule. I could in maybe 5 months so we will see.

My stool is bloody, smells so bad and I usually have no odor to my stool. And my stoma covers reaks of fish (and that is not eating fish or taking anything fish related for a long time).

I just had cupping and acupuncture done and when my lovely Acupuncturist took one needle out of a trigger point all this stool and gas darted through my guts.

this might just be my "normal" now. I have a few months to see if a miracle happens for now I am burned out. My valve feels like sandpaper and hurts like hell to intubate, the whole bowel just feels raw.

Hey I have c.diff and read your posts. I had a J-pouch put in in 1987 - one of the early ones. I did have a time that I was over grown with a nasty bacteria known as pseudomonous. It took about a year to get rid of and I probably had it for years. I read that c.diff is very unusual for J-Pouch people...is this true? I'm trying to work out getting to the Cleveland Clinic as Dr Lavery was my surgeon and I have heard that Dr Shen is specialized in pouchitis. Is he well versed with c.diff. I'm on liquid vanco now 200mg. some tolerable side affects but still feel rotten. Can they ever get rid of c.diff in the sm intestines?

Vanessa,
Have you tried an elimination diet? 24-48hrs of clear fluid fasting and then slowly reinstate one food group at a time...see if it helps if not my favorite is the dissociated food groups...(fit for life)...it got my guts back on track in the early 90's after about 10yrs of on and off problems including pouchitis/flagyl/pouchitis...for years...now I am pretty clear except for the occasional bouts of gastro...your gut is visibly reacting to something and I am not sure that removing your pouch will change that...only make things more complicated for you and give you less digestive apparatus...
When was the last time that you saw and alergologist? You may need testing too....
Sharon

I have done fasting and man during fasting I get worse, even more gas and violent feeling stool seems to move around with clear liquids. I got it down to not drinking any coffee or tea, eating just chicken and turkey. I still have issues. I don't know how much I have to eliminate when it is down to basically nothing at all.

I have hooked my pouch up to bags to get some relief lately and it helps a lot so I just figured the pouch itself is causing the pain. My whole abdomen is to sensitive and painful to touch. I can't walk up stairs now and I was working out 5 days a week. I have pain everywhere and started acupuncture and going to CC for pain management now. Everything in from the top of my ribs to vagina are just in a lot of pain.

But to answer you question Tim. Shen is good at what he does. I don't have anything anyone can visually see though so it is tough for him to help me. He did diagnose my c.diff when everyone else thought it is impossible to get without a colon. Funny...it isn't uncommon. I went on Vanco and it caused me a lot of body aches and pain. It gets rid of mine but I swear it feels like it still lingers.

I feel like I am this cancer patient that is incurable and goes on these diets, life searches, yoga, mind-body connections, etc. to cure it. I don't have cancer anymore but I call my pouch the cancer in me now. I only have so much left to give for this battle and with issues nobody can see.

Maybe I should talk about taking my pouch out more often. Today it was golden! Or the hearburn meds I got on did some difference. Who the heck knows. My valve still hurts really bad though so not sure what I can do for it. I have worn caths for a week to give it a break but it doesn't do the trick. Wonder if there is something to intubate with that can ease some of the pain.

I use the Medena cath...'French 30' is the size.
It has a rather blunt end with with a small hole in the end of tube. Then there's 2 larger holes on the side.

I know there is a catheter that is more bullet shaped. I just can't think of the name of it right now...I will post later if I can find it...

Marlen is the one I was thinking of. It has a bullet tip with two side holes. Some say it is easier to get in.

If your pouch looks alright, maybe you could try liquid antacid right into the pouch. I have done this, also I have put Pepto-Bismol straight into my pouch. I think it is worth a try, I emptied my pouch...cleaned it out with water and inserted through the catheter and left it. Then roll around so it coats the pouch and inside the valve. Also take by mouth, Acidophilis, a probiotic to put good bacteria into your system. This is what I did years ago. When I take antibiotics, I usually have to take spasm and antacids as they upset my GI system. I'd stay away from spicy foods and anything that upsets your stomach or GI system. Like....milk?, wheat? and eat soft easy to digest food. Give it time to settle down and heal. I pray you find something to get over this. Stay away from gas producing foods and drinks while this is going on. Prayers to you.

Leave your catheter in 21 days, if your valve is irritated. Make sure you don't have any sharp or cut edges on the holes of the catheter. Good Luck!

I have had valve pain since surgery. I rotate between both catheters. The bullet tip I hate since it cause my bladder extreme irritation for days, it does something to it. The 3 hole one works the best since that is the one that was designed for the kpouch but I have to boil those since straight catheters won't go in me at all, have to be very curved. Anyway... I did get some pink stuff once to put in my pouch last year when people thought I had pouchitis when I never ever had it.

I will ask Shen (my GI) about the liquid antacid since I have had C.diff I can't use certain meds or antibiotics again.

The only probiotic I take is Florastor or S.Boulardii since that is the only probiotic that fights c.diff and only one you can really take while on antibiotics for c.diff.

Hey Vanessa,

As long as the stoma is done well, an end ileo is great. Life is pretty rough when you have a dodgy stoma though. I'd rather not have spent over 4 hours doing a change today, for example. K Pouch surgery is fast approaching for me, and even if that doesn't work out, a new stoma will be created to replace this joke of a thing. Good luck with the decision making.

Ad

Yea as of right no no surgery is advised since my guts are a mess it is stemming from my actual gut, not pouch. So I would be just as bad with an ileostomy I guess so see my GI tomorrow to try to get a plan for this. I have no real stomach so my issues are complex.

You've definitely got a lot more more to contend with than me when it comes to all this GI stuff. Really hope they work out how to reduce the pain you're getting. Does Dr Shen have any ideas regarding your reduced stomach size, and it's effects, and what to do to counteract those effects. If you've mentioned that i'm sorry, it's been a while since I read the first part of the thread.

Ad

Shen said almost everyone that has any weight loss surgery will suffer from small bowel bacteria overgrowth since it starts in the gut. Things aren't digesting properly. Diet and antibiotics for life is what he said I can plan on. But even with diet lately I am bad so it is just exhausting. I am taking immodium for now and or lomotil to try to slow my guts down. From the time I eat something to the time it hits my pouch is about 2-3 minutes. I am a chunky chick, 30 pounds over weight and never can lose weight since I lost the majority with WLS. Now I lost 7 pounds in almost a week.

Maybe it will just stop... ugh.

Do you mean any weight loss or is it unexplained weight loss? I'm a little confused.

kathy

I think Vanessa was referring to any weight loss surgery, not just any weight loss. Weight loss surgery alters the gut. Not so sure about the gastric band causing the same problems, but Roux-en-y surgery involes removal of most of the stomach and some duodenum.

Jan

Oh, I see. I misread that. I think I must have inserted an extra word - like 'after' before surgery. Thank you for the explanation.

Okay, nevermind.

kathy

To think, if I had a colonoscopy before I had a vertical sleeve done.... Things might be different today.

Lomotil has helped a great deal actually. I drained my pouch 4 times today and went to Richmond for the day and had some routine acupuncture done. I think I am having dumping syndrome based on reading more. I never experienced this in my life and I had WLS almost 7 years ago. Perhaps a combo of bacteria overgrowth and that has me messed up. Self diagnosing since my local GI seems to not give a damn. Shen does but he isn't local, so only so much he can do via email and phone.

One good thing is I have been off opiates all week long. I think the Vanco was causing the Fibro pain all over. Been off it for 2 weeks now and the acupuncture has been helping a lot with my ab pain.

hey vanessa. sorry you are still suffering so much. When I had a high output loop ileo (when my jpouch got disconnected) one of my local doctors put me on an anti-dumping diet. She explained that "dumping syndrome" was very common for people after weight loss surgery, but that the way things moved through was the same for me with a clinically classified high output ileo. Maybe your body is reacting to things moving through so fast - fatigue, joint pain, etc. Let me know if you need some "anti-dumping" tidbits. The program she had me on worked incredibly.

Only thing though you might want to be careful of.. is you don't want things to hang out too long.. as you have bacterial overgrowth. So somehow seems you have to find methods of eating, drinking, meds, etc.. to balance and achieve an acceptable transit time?

And yes I do think vanco can cause so much pain. I was on IV vanco for probably 6weeks and it really really messed me up in so many ways.

I'm also with you.. on the local docs. My current local GI has now pretty much refused to treat me because he is offended that my last several years of surgeries have been done at CC and that Dr. Shen has helped me trying to get my wound to heal,etc. I even had an appointment with my local GI recently trying to get him to help me with my bacterial overgrowth and being underweight.. and he had the audacity to tell me diet didn't matter. And if I really wanted help then why don't I just drive back to Cleveland.

Shen told me to stay on a high fat/low fiber diet. Paleo is what I normally do since I am a crossfiter and people preach that crap like it is a cult :-) So I just have to get on it. I got a small container of LARD at my butcher to cook some meats in. I lose more weight on paleo anyway and have less pain when I cut out any startch. According to him and Geeta, bacteria can not form in fat so when consuming a high fat diet it can help get nutrients and calories in if needed.

Lard? Could you maybe use duck fat instead? Much healthier and no colestorol!
Sharon

Decided to ride this sucker out. I know I can't live with a bag. Reason I got this surgery in the 1st place. I have to think maybe a few years down the road this might do a 180.

More I read ostomy boards and Fb threads the more their issues sound all like mine, just external and slightly different. Foul smell from smelly mucus on my stoma = smelly bags, nervous pooping when the stench is bad in my gut = people get embarrassed emptying bags at work due to smell, loud noises from stoma = loud noises in my pouch and stoma sounds like it is always farting loud, twisted bowel=twisted bowels. So i guess in the end it is just trading an issue for an issue just with more costs of appliances.

Doing my best for now. I have been doing bad though. I have stool that causes so much pain passing into my pouch and gas that presses my bladder. Nerve blocks I go for again on the 8th so here is to helping that.

Also my pouch and gut/intestine completely turned inside me and I was on the floor screaming. Horrible experience. Now in my upper ribs it keeps cramping, twisting and feels like a knot is in my rib cage. Of course CT/MRI and small bowel barium shows NADA. See what Ashburn and Dietz say on the 8th when I am at CC.

Going off antibiotics that gave me c.diff have made my life hell. I can't even walk that much doe to pain in the bowel and bladder. Over that part. Trying Xifaxin for the 3rd time.

There is nothing to fix in my BCIR (I don't have a Kpouch). I have nothing wrong basically so there is nothing to do to it. If I wanted am ileostomy then that is the only option to go to. I came to the conclusion I had this surgery because I can't live with a bag so I will make it work.

For now it is what it is. Had some more nerve blocks done at CC and helped a lot with some pain so keeping at this and trucking along. Go for runs now and stuff so life is 'ok'.

Also I wouldn't go anywhere else but CC. I have been to most of them all and hated every other hospital.