Pouchitis, cuffitis and a planet of regret....

Hey, Haidalyn. So sorry to hear you're in so much pain. I've been through similar troubles, but I can't imagine taking care of children during that.

A few things I can say:

First, you made the right choice getting the j-pouch. You probably know, pretty much everyone with UC needs their large intestine removed eventually because of colon cancer.

You're only 3 months out. The first year is all tough adaptation. It takes a lot of time. In my case, I still struggle day-to-day after 6 years. I've mostly had to learn the hard way the best things to mitigate my symptoms.

Immediately - and affordably - I recommend trying 3 otc medicines. At Wal-Mart or Sam's Club you can buy a large amount of loperamide (Immodium) pretty cheap. Along with that, I've had a lot of success using combinations of Beano (gas prevention) and Gas-X (gas clearance). Depends on the circumstance.

(With loperamide - you need to judge this on your own - I've been told by several doctors that it's very safe to take, and that it's alright to take more than the initial 4mg. Please do not take my word on that. Please exercise discretion. For most people, though, loperamide is tolerated very well and is not dangerous at all.)

The burning is mainly from gastric/digestive fluid moving through too quickly. Drinking some extra water is advisable to prevent dehydration, and also to dilute those BMs.

I recommend getting some type of bidet system. I live in Japan, home of the Washlet - brilliant stuff, it's in at least half of public restrooms that I see - but ordering one for yourself might be pricey. It takes some extra time, but I've found it helps to immediately take a shower after using the bathroom. (If I'm passing so much liquid with constant burning, I'll just stay in the shower and go in the shower. You gotta do what you gotta do to not be in pain and not go crazy.)

One more thing, I've ruined enough underwear and pants to switch to adult diapers full-time. Especially during difficult spans, they help me sleep and live with a lot less anxiety.

With infections, of course, gotta see the doctor. More antibiotics may not be the answer. You may not have to worry about Humira. Don't be afraid to be insistent with your doctors. You're in pain and you're paying them.

I'll end this with saying I understand what you're feeling. For right now, don't worry about further surgeries. I know surgeons and literature say that a lot of people go back to normal living after 3 months, but that's irrelevant. I've never heard about anyone achieving some kind of normalcy in less than a year.

Keep us posted. We're with you. It's tough. It's just goddamn tough.

Haidalyn, I'm sorry you're going through this. I have a couple of thoughts, one or two of which might be helpful to you.

1) When neither Cipro nor Flagyl alone worked for me any more, the combination has done the trick nicely for a few years now. OTOH they didn't fail nearly as quickly as you have experienced, and I didn't experience significant side effects with either, so this may not work well for you.

2) Have you tried soluble fiber? I've used Metamucil since the day I got home from the hospital.

3) Have you tried a rectal steroid? That can calm down both pouchitis and cuffitis with a much lower dose than an oral steroid.

4) I found that Lomotil works better for me than Imodium, but either is worth a try. I prefer not to take it all day or at high doses, but just at bedtime to sleep better/longer. Some folks have good success with higher doses, but others seem to get themselves into trouble. 

5) I'm worried about your "internal strep and staph infection." If you actually still have such infections I'd expect you to be hospitalized, so I wonder if you may have misunderstood what the doctor said. In any case, most of us sometimes have more pouch trouble when another infection hits. Even a cold can be very disruptive at times.

6) Don't drive yourself crazy with diet. What you are describing can't be fixed with a fancy diet. I'm not suggesting you go on a bender, just that you focus on things that may help more.

7) The Washlet brand bidet that Griffin mentioned is wonderful but ridiculously expensive. When My Washlet was away for repair I installed a very inexpensive BioBidet (the Elite3 model), and I was blown away by how well it worked. It would have been cold in the winter, but still much better than TP.

8) The anal pain you are describing could well be anal fissures. These must be taken care of (if you have them) because they are so painful. Treatments include sitz baths, nitroglycerine ointment (Rectiv), nifedipine or diltiazem cream, and sometimes Botox injections. At least discuss this possibility with your doctor.

There's probably more, but this is a start. Please don't give up!

Thank you so much GRIFFN and Scott F for the tips!! I started taking a Cipro in the morning and Flagyl in the evening and I've gotten a little relief. Will keep you posted. I am going to take lotimil as well. Thank you again for your help!! 

Hi Haidalyn,

 My name is Drew and wow does my heart go out to you. I had my take down surgery October 19 2016 and I'm still adjusting bigtime. I'm going 20 to 30 times a day also. STILL.

 I had lots of pain from acid  one inch up inside and around anus area for the first 60 days. I take 3 baths a day  to wash and alot of times that is when I'm able to go to the bathroom. I guess the hot water and the fact my body is lying flat allows me to release. So I feel the urge and jump out of the tub and sit on the toilet, do my thing and get back in the tub. I will go ahead and let myself crap standing in the shower also when taking a shower sometimes. I've learned that sitting on a toilet works, but it seems to me that after all theses surgeries that our bodies get kinked up when sitting so things don't flow as well at all and when I stand or lay down in shower or tub my body wants to do its thing.I wear a diaper at night for safety sake,still have leakages, use Calmoseptine. I'm 52 years old and have had UC since 1994. I also have PSC which is a liver disease that alot of people with UC also have.I'm doing the anti-biotic merri-go-round also and when I stop taking them it all starts back up again. I'm on and off pain meds, 10 mg. Oxycotin one a day 3 days a week. I've noticed with me, that this pain med. calms everything down for some reason without me being "High". The 10mgs helps bigtime with the urgency,burning,un-Godly itching,cramps,pain and mental angist of... "Can I handle all of this for another 20 or 30 years?" I'm gonna talk with my doc about this discovery tomorrow as i recently made this connection the past two weeks,seems I was always doing good,then get offpain  meds and would fall apart. It's not a permanent solution but hey i'll take 10 or 20 mgs narcotics off and on for a year or two until everything heals up or heals to the point of tolerability(is that even a word?)

 The small intestine isn't set up to hold stool so it freaks out and constantly tries to get rid of it like our sick colon did. Spicy foods kill Drew bigtime. I must be really careful about that because I love anything spicy. I don't drink so i dont know how alcohol effects people like us. I do still drink soda but I'm cutting down on that.  Little bits of food that don't digest and stay hard like nuts or popcorn can block and irritate me inside which causes the itching. I'm using this medical food called  EnteraGam, it's supposed to help thicken up the stool which will cut down or trips. Less bathroom trips means less pain from passing stuff through my bottom. I eat  5 packs a day. It hasn't helped yet after 2 months. It may work for you though! Geez hang in there.We are all with you!  Drew

Hi Drew. 

Hang in there brother. I feel your pain. What antibiotics are you currently taking? And how frequently do you switch them up? Are you taking them every day? I have also noticed that opiates like OxyContin or in my instance, Tramadol (synthetic opiate) can really help my symptoms except when I'm off antibiotics. At that point things flare up to the point where I am raw and literally almost screaming from the pain and on the toilet 40 times a day, and nothing I've tried brings relief. Have you been scoped for pouchitis or cuffitis? My surgeon scoped and said I have both. The cuffitis is super tough to get under control. Pouchitis seems to respond a little better to antibiotics. I'm going to experiment with colloidal silver enemas because, why not? Apparently it's very effective against many strains of bacteria and it seems logical to me that targeting the exact site of the problem might help. That and probiotic enemas. Have you considered a pouch reversal and going to a permanent ostomy? What are your feelings on that?

Oh, and I did used to enjoy drinking alcohol, wine specifically. Now I can't touch a drop or I pay dearly. ��I've told my husband he's lucky cause I'm a cheap date now...

Hey thx for the quick response! I take Cipro right now. I'm allergic to lots of anti biotics. I'll stay on the anti-biotics as long as I can with the oxy and Tramadol.I was recently scoped a month ago and pouchitis was confirmed. I've heard good stuff about colloidal silver and I take VS-1 probiotic once a day. Im not going to do a reversal. I'll stay on pain killers before that. The ostomy is so humiliating to me. I mean I was so ready to end it all before these surgeries started. I'm just tired of it all to be honest. I feel that I'm keeping myself alive to keep myself alive. So today my goal or purpose is to be there for other people and stay out of myself,be grateful for all I do have,improve my spirituality and nurture   the hopes that I'll get a break here and there and not be constantly playing catch up. I project into the future  a lot about liver transplants and I'm like really? That's next? Lolo

The colostomy bag really is not my answer. I had some humiliating times with my colostomy Haidalyn so that really isn't an option. It scares me.

Just wanted to say, both of your experiences remind me so much of my own. I feel for you. It's good to know I'm not alone, too.

Today has been pretty rough. Not hungry. Exhausted. 8 bathroom visits before I got out of bed. Pain. Constant creep of mental noise. I'm lucky that my wife is so supportive and makes me happy without trying. I'd be in a rough spot without her. Pain meds are basically nonexistent where I live. The concept of pain management is totally absent.

Haidalyn, a lot of this will be hard, but I hope you can give it time. Hopefully you'll heal and adjust better than my body has.

I also have PSC and worry about transplants. My liver has been a champ, though. I can even drink moderately - doctor gave the okay in light of recent studies - on good days.

After you have tried everything you can for your j-pouch problems and you still feel you need to have your j-pouch removed I have a few suggestions.  Go to someplace like the Mayo Clinic or Cleveland Clinic for the surgery.  I met someone at Mayo's that was there as the surgeon removing her j-pouch messed it up horribly.  My surgeon at Mayo's said the removal surgery is worse than the j-pouch creation surgeries. I was in surgery for 8 hours but 5 of those was lysing  adhesions.  The surgery has to be open and the scar was longer than my open colonectomy surgery #1.  

That said I exhausted everything my Mayo Clinic GI and surgeon could treat/procedure/medications do before having it removed.  It has not been the end of the world.  The recovery from the surgery was better than after my j-pouch surgeries and my permanent ileostomy is light years better than the temp ileostomy was.  I didn't use Humira either.  

All this said, I agree with all of the above and think you need to try to wait for a year before removing it.  I had trouble with mine for 5 years and should have had it removed around year 3. My bidet chair was my best friend.

I had my surgeries in 2007, with complications including obstructions and a pelvic abscess. I suffered with the painful, burning multiple bowel movements for 6 or 8 months. I tried Lomotil but it gave me gas, which meant more trips to the bathroom since I couldn't pass gas without passing liquid stool.

At some point, I was prescribed some oxycodone 5mg for pain and I noticed that it also slowed my gut down and reduced the frequency of BMs without giving me gas. After much testing by various GI specialists, with no conclusions or recommendations other than going back to the ostomy, I went to a rheumatologist. Not unusual, as they are experts in autoimmune disease. He immediately prescribed oxycodone up to 4 times per day, and a fentanyl patch to provide continuity. This reduced my BMs to a more manageable 12 to 14 times per 24 hours. By increasing the time food stays in my system, it reduced the undigested food and stomach acids coming out, which reduced the pain and irritation in the pouch and cuff. I continued to apply Calmoseptine after BMs for years, to reduce the burning sensation after a BM.

This allowed me to return to work (I was a nurse). It wasn't perfect; the oxycodone blood level goes up and down over 3 to 4 hours, but it was a vast improvement in both comfort and health.

I never had any problem obtaining these narcotics. My rheumatologist does not prescribe Oxycontin because he thinks it's too addictive, but he never questioned my use of what he prescribed. Over the years, as tolerance built, we would increase the dose slowly, but I never took large amounts. I don't even like the "high" effect of narcotics. By the time I retired, I was using a 25mg Fentanyl patch every 2 days and oxycodone 5mg about 4 times per day.  Slowly, over the years, my body adjusted and I could do away with the Calmoseptine. I was generally more comfortable. Many foods that never bothered me before the surgery had to be eliminated, but I think everyone has different food sensitivities and you'll figure out yours.

I also started taking Metamucil twice a day in as little water as possible after breakfast and dinner. That helped to slow transit time and firm up the stool a little bit.

After I retired, I decided to see if I could get by without the narcotics. I slowly reduced them over about 3 or 4 months. It was unpleasant but bearable. After a few days without any narcotics, my bowel function settled down to about 10 bowel movements per 24 hours, with no more dysfunction than when I was on the narcotics.

This is my first time on this blog and I haven't seen any other posts about using narcotics to control bowel function after colectomy with J-pouch. My experience is that it allowed me to continue to work, gave me a reasonable quality of life, and allowed my digestive system the relief it needed to slowly adjust over a long period of time. Clearly, I was not an addict since I never liked the feeling when we initially increased my dose, and I got off of them as soon as I was physically able. I think any provider who does not consider opiates, with their profound "side-effect" of slowing bowel motility, as a feasible treatment option for patients with extreme discomfort and dysfunction due to J-pouch surgery is failing as a medical provider.

I am 64 years old and 10 years since surgery. We all know what you are going through and it does get better over time for most of us. Please talk to your doctor (or get another one if s/he won't prescribe them) about trying narcotics to slow your bowel down.

I posted same thing last week. It is awesome. I don't know why 5 -10mgs of oxy works like that. I'm off now. Had to get on Flagyl. 

I take 2-4 10 mg hydrocodone/tylenol daily.  I took it before my pouch was removed and don't need as much as when I had my j-pouch as my surgeon spent 8 hours during 2 surgeries on my scar tissue.  I take 8 Loperamide daily and also use metamucil twice daily.  I mix it in a small amount of  unsweetened applesauce as I can't drink the stuff.  If you want you can add a bit of ginger with it.  The Loperamide is the appetizer and metamucil the dessert per the nurses.  Nice way to remember the best timing to use them.  I didn't need the loperamide when I still had my j-pouch as I had strictures and scar tissue that slowed things down.

Long answer to say I have taken Norco, hydrocodone, for 7 years for pain and slowing of my system and never get high from it.  If I took enough to get rid of all of my pain then I would need more. I can't get rid of all of my pain and live with chronic pain. My doctors don't have a problem with my use of it either.

Thanks for all your feedback and responses guys. It's not only comforting but incredibly helpful to read all your experiences and what has and hasn't worked for you. For the moment, taking both Cipro and Flagyl every day seems to be helping with tramadol occasionally. Hugs and good health to all of you. I'll continue to check in and keep you posted, and please keep posting about your journeys too!

Haidalyn posted:

Hi guys. I've been on this forum a few times before and you all were a huge help. Three months ago I had my j pouch takedown surgery.  Since then I have had horrible pouchitis and cuffitis. My symptoms are worse than my original UC was. Bloating, cramping, gas 15-20 plus trips to the bathroom a day and constant, unrelenting, searing pain in my rectum. I have developed a multitude of food intolerances and everything I eat seems to make things worse. I've tried SCD, low fibre, bland brat style diet.  I just can't seem to find a diet that will clear me. It doesn't help that all the diet plans and eating instructions contradict each other. I'm so confused. I am allergic to the entire class of 5 ASA  drugs so can't do the rectal foams or enemas or mesalamine orally. At first I got relief from taking antibiotics and did a few runs back to back. Starting with cipro twice a day but after a couple of weeks it stopped really helping. So I switched to taking 500 mg of flagyl 2X day but after about a week that seems to stop working as well.  I'm still badly symptomatic and in pain.   However, If I go off the antibiotics all hell breaks loose and I'm in agony and on the toilet all day and night.  Between the UC I had before surgery and the pouchitis and cuffitis I have now, I've basically been in a major flare for five or so years.  I'm one of those people who doesn't go into remission for more than a few days or so.  (Guess you can't really call that remission).  I've also been taking probiotics daily because the antibiotics give me horrible yeast infections along with other very undesirable side effects.  I'm battling an internal strep and staph infection I picked up at the hospital and can't seem to really shake.  My stomach wound got badly infected and I don't think ever really cleared up properly.  It's still sore to touch. I don't have any insurance to cover my prescriptions and can't afford humira.  Does anyone have any suggestions? I'm considering getting the pouch removed along with the rest of my rectum and going with a permanent ostomy but to be honest I'm terrified.  Terrified of going through the surgeries as my last surgeries literally almost did me in, and terrified that I would go through all that again and not get relief from my daily pain.  I'm looking for some advice or guidance or really just feedback of some sort.  I am really trying to be positive but I'm so scared and overwhelmed.  I have two young children at home I need to care for so I just can't be debilitated like this.  Big hugs to all of you that have been through this and take the time to help others through the journey.  It is very kind of you...��

 Hey!!!!

we were in the SAME BOAT!!!

Im 4 years out though. Taking BOTH CIPRO AND FLAGYL helped immensely- been on for 3 years.

i also take 2 limotil in morning and night. I've started 6mp again but I don't think it's doing anything.

i tried sandostatin injections 3/day waste of money but call ur GI rather than your surgeon. Their knowledge stops when they put the scalpel down.

ask your GI about ENTIVIO, it's a brand new, 1st line biologic infusion strictly for UC. If your insurance doesn't cover it there is a program for financial needs. Try it.

Another WONDERFUL diareah stopper that is BRAND NEW a pill called VIBERZI. ENTIVIO took too long to work for me (3months) when I decided to get jpouch, but if I had waited, my GI's patients are doing well on it now.

About VIBERZI- Drug reps can send samples to your doc if your insurance doesn't cover it. Please take this note to your GI and ask him about VIBERZI. It works fast. I take it daily with cipro&flagyl, lomotil, (6mp mercaptipurine 50mgs for pouchitis) and at night I take 5mgs METHADONE to shut down bowels.

I was ready to pull my pouch out and cry all day because my butt was killing me. I was going 25 times! My doc didn't believe me so I took a pic -gross-of every one! 

From that he actually saw some blood that's when he started the 6mp and antibiotics together. 

Feel free to ask me anything. I've been where you are. You got this!!!!

Wow. I love you guys. I'm on vacation  in Panama. I was doing so well... Yesterday I'm 2 hrs off shore fishing and had to have my guide stop the boat so I could empty my bowls in the ocean. My body waited until I landed in a foreign country 3k miles away to act up. So I jumed off the boat 3 different times to crap in the ocean. Wow. My disease is not just a job it's an adventure. It could've been worse. I could have been eaten by a shark I guess. I had my take down oct 19 2016. I feel no better off. The only thing that works now is Oxycodone 10 mg 2 x a day. It fixes everything. I only brought 100mgs for 11 days cause I was doing so well. When I get back to Panama City I'm gonna go see a dr. To get more or I'll have to fly home. Antibiotics no longer work for me. I've been on them for 20 years on and off. Let's just keep on trucking guys one day at a time.

Thanks Alibee for the great tips!! Thanks to all of your combined wisdom and advice I'm doing a lot better at the moment. Drew you're a rock star buddy! I think it's awesome you have the mojo to go to Panama and live your life. Sometimes you just have to say screw this disease, I'm not gonna roll over and die. Yes I'm sure it's not fun having to go to the bathroom off a boat but I admire that you're out there experiencing things regardless. I've been so scared to travel that I haven't for a long time. We just booked a family vacation to Mexico though in two months so here's to some potentially similar scenarios! Hang in there guys. You are warriors and you inspire me not to give up.