Has anyone had luck with Stelara?

Hi Bandy - sorry that you are going through this.  Hopefully the prednisone will kick in.  I have been on Stelara and I think it has helped me.  I have a JPouch.  It gets inflammation- but they have not called it Crohn’s yet.

They did rule out C. diff or parasites, right?

Thanks Doug for your reply.  I’m stoked to hear Stelara is working for you!

Scott - Does sound like C-Dif doesn’t it?  It was ruled out the first time then again this time.  Heard from Dr this evening who said he was confident we would get pathology reports back tomorrow.  I didn’t know that with the biopsy that they could categorize the TYPE of inflammation.  Apparently Crohn’s appears different from say Pouchitis.  They will also determine if we should go an antibiotic route based on the tissue sample.  We have not tried antibiotics yet.  I will just be happy to have data that will provide direction.

Thank you both!

Bandy

I was in hospital several times because of watery stool, low sodium blood levels and other minerals (cramps), weight loss and circulatory problems. Even infusions often only kept me on my legs and did not improve digestion. Antibiotics (Cipro & Flagyl) always helped within 1 or 2 days.

Hi Steve - did they administer antibiotics via IV?  I start a new job a week from Monday and am hoping to get well quickly so I can start getting my strength back to be sharper and stronger by then.  I worked so hard to land this job.  I can’t believe I’m dealing with being sicker than I’ve ever been.  So very sad.

Bandy

Hi everyone, my name is Kim and as sad as it is to hear you are all having struggles, i am very emotional right now and happy to not be alone .

Brandy, i am so sorry, u and I sound very similar ! Medication fails! all of it ! ugh! OI have had on pouch since 2005 and have had nothing but issues, multiple day surgeries , leaking bile that burns my entire butthole, bleeding! It’s so bad now that i work from home , haven’t farted without crappy my pants since 2005. wearing diapers to bed too. which is great at 53 lol.

I am sending u courage and strength!

🥰

diet is a big part of staying healthy for us too, high fat diets like Keto are horrible for us. High fat equals more bile. High Protein, lots of water and vitamins and minerals ! i do pickle juice shots for muscle cramping and liquid iron with all the b Vitamines, extra magnesium and D3 too. It’s a friggin full time job taking care of ourselves

Hi Kim,

I’m so sorry to hear of your struggles and understand.  If you haven’t tried Calmoseptine cream for the exit hole, you should - it’s so soothing!!

Just met with Dr and we are trying antibiotics.  Sulfamethoxazole (Bactrim).  But he feels this is more Crohn’s.  But it it was, steroids would have worked.  This Dr. said it looked like Crohn’s because there’s a big scratch in my pouch vs an overall appearance of infection.  He also played down what the other Dr said about categorizing the inflamed tissue findings.  (I’m with Kaiser). It’s so important to have one Dr as your quarterback when in a group practice like this!  Which I do, so I’m grateful.  Hoping antibiotics help!!  Not leaving until we have this under control.  

Bandy

Oh, wanted to agree that diet IS so important!  We are certain this has nothing to diet.  I am extremely disciplined and know what does, and doesn’t work for me.  Love the pickle juice idea!  A product called Liquid IV is also fabulous.  I mix it with coconut water.

Bandy

Hi Bandy, in hospital they often startet with IV antibiotics for some days, but soon changed to tablets. For chronic use (since 8 months now because of chronic pouchitis / ileitis) I am taking pills of course.

Hi Brandy, I am sending u courage and strength and breathe!

Thank you for the cream suggestion, i haven’t used that one and will try it for sure !

I hope there is some light for u soon 😊😊😊

I recommend applying with disposable nitrile gloves.  It’s super sticky stuff!

Thank you for the reminder to breathe.  I’m not good at taking the moment to do that.  Feel better and hang in there!

Bandy

Hello All,

Still in hospital.  Inflammation is down but I’m still going 14 -18 times a day.  Pure liquid.  Does anybody have any recommendations for bulking up the poop?  I’m taking immodium, lomotil and fiber tablets while eating a low residue diet.  I’d drink cement at this point if it would help.  
Dr’s are thinking it might now be caused from the antibiotic (bactrum) - which IS making me feel better in my head (not so foggy) and hopes after incomplete antibiotics, it will get better.  

Would love to hear back from you all regarding this hypothesis and if you can suggest a magic “bulking” bullet.  

Thanks,

Bandy

Hi Bandy, as both hospital stays were some time after you started Humira, have you discussed pausing the therapy till it gets better? Perhaps your immune system can't deal with stomach flu viruses good enough while you're on that med.

As your doctors ruled out c.diff, they should have done norovirus at the same time.

If you do not respond to bactrum within 3 days you might switch to standard pouchitis antibiotics Cipro & Flagyl if you can tolerate them.

I guess you are dealing with chronic pouchitis or ileitis since you have to take biologicals? How did your severe diarhhoea start - very rapid within a day or slowly building up over some days? For me a norovirus or even more c.diff hit me within a short time, while bacterial disorders were more like a gradual development.

I can't give much advice about liquid stool. One idea is to strengthen your digestive system by adding bitter herbal extracts to your food, but in hospital they often don't administer natural meds.

I never got very good results with fiber capsules or tablets. The powdered fiber mixes better with stomach and intestinal contents, at least for me.

@Bandy posted:

Apparently Crohn’s appears different from say Pouchitis.  

There is no test that magically and reliably  distinguishes between Crohn's, pouchitis, or "new disease process", which is what modern researchers think chronic inflammation appearing in and above J pouches may be. In my case they chased expensive and inconclusive diagnostic tests for a few years, and then gave up, deciding effective treatment is more important for the inflammation than what to call it. The latest/newest development is that they believe it's a new disease process and not Crohn's, but it really doesn't matter since you have what you have and still need to treat it.

In addition, guess what? All the potential treatments are the same, regardless of the name or label.

In your case it seems like a number of biologics can still be attempted- Entyvio, Stelara, Humira. Entyvio has a way different mechanism of action than Remicade and is often indicated as a second line biological option. Good luck

Hospitals suck.

Sorry your dealing with it.

I have no answers. I got rid of my pouch 6 years ago.

Too many issues and hospital stays.  Mine just wouldn't work properly and I was tired. Really sick. And tired of dealing with it.

We all have limits.

Richard.

Hi Brandy,

I got that cream and it’s great! I literally have holes in my butt cheeks from all the seton surgeries so the cream is helping cuz they are always leaking! Thank you.

I know this sounds super simple but i have liquid bathroom episodes a lot too,

i have oatmeal , just the quick packages  , with blueberries every day. I get one sweet crap a day lol I find it’s soothing too, like the oatmeal helps my sore butt.

I hope u find an answer 😊😊

when i said one sweet crap , lol, i mean there is one is the 12 that isn’t liquid

I have found that organic powdered psyllium definitely helps avoid the liquid stool, but I have had to introduce it gradually.  I have 2 t before breakfast and 1 t before other meals, in water.  I started with 1 t. before each meal.  I also have found that I don't excrete much at night if I have a lot of salt at my evening meal, as I retain the water instead of peeing/pooping it out.  I have noticed that my guts are less irritable in general when food moves through more slowly.  Psyllium in the above form seems pretty clean, but I always wonder if keeping stuff in my gut longer can offer bad flora or bacteria a longer time to grow?  I make sure to eat something with probiotics in it with each meal to help the good flora. 

Thanks Sara, I have another sweet abscess forming today 🤦‍♀️🤦‍♀️ yay! lol The stuff we all do for ourselves to just have a normal day . Wait , no day is normal

Can you tell me more about this abscess?  You're right, no day is normal.  But for some on this group, I have heard that they have greater normalcy than we do.  It makes me wonder how that works?  What was the cause of the "normal" people's need for pouch removal?  Are there any patterns?  Mine "need for removal" was from UC, but mostly from cancer caused by the UC.  From my own experience, the descriptions of other people, and web research, I have hypothesized that UC is a condition involving the whole body, but expresses itself most in the colon, so removal of the colon doesn't really treat the condition.  We continue to have issues with the J-pouch because the guts are the victim, not the perpetrator of the insult.  But many who have continued issues with the pouch might not be UC sufferers, though they may have some other global problem, like crohn's.  In many cases, though, I'm sure it's the fragmented approach of western medicine that blames the victim (the expression of the disease) and not the perpetrator (the cause of the disease) and removes an essential organ without really knowing what it's doing.  It's haphazard and irresponsible, in my opinion, but here we are, dealing with the same problems and down one organ, which brings with it the imbalance of having no colon.  So now we're not only treating the original condition, we're treating the imbalance caused by an important part of the body being gone.  If I had to go back and do this again, I'd keep my colon and just have them remove the tumor.  Regrets.

Hi Sara,

I would like to echo your sentiments. While the surgeries and complications are now more than one year ago, and while I have mostly good QOL, I still have daily challenges and expect to have them the rest of my life.

if I had a chance for a do over I would not take this path again. I would choose to keep my colon and rectum and have a scope every 3 to 4 months.  Since my dysplasia was at 10 cm up, no surgeon would perform a low resection ( given the UC would reoccur in the remaining rectum; I know this to be true since i have cuffititis and have to treat it with daily canasa suppositories)

nonetheless, knowing what I know now I would have kept everything and taken my chances!

just my opinion and thoughts.

Hey Bark Less,

I wish people like us could consult with people who are currently having to consider their options.  I had no expert advice from those who had been through it, and I'm assuming your experience was the same.

Glad to know your opinions and thoughts!

Agreed, once they start mentioning colon cancer risk, all other options seemed to go out the window and I was told to be grateful that I wasn’t going to have to have a permanent bag. I think the pouch is oversold, complications are undersold and we have a mediocre solution to a complex problem.

@Sara Marie posted:

I have found that organic powdered psyllium definitely helps avoid the liquid stool, but I have had to introduce it gradually.  I have 2 t before breakfast and 1 t before other meals, in water.  I started with 1 t. before each meal.  I also have found that I don't excrete much at night if I have a lot of salt at my evening meal, as I retain the water instead of peeing/pooping it out.  I have noticed that my guts are less irritable in general when food moves through more slowly.  Psyllium in the above form seems pretty clean, but I always wonder if keeping stuff in my gut longer can offer bad flora or bacteria a longer time to grow?  I make sure to eat something with probiotics in it with each meal to help the good flora.

This is great information Sara!  I look forward to trying this! 

@CTBarrister posted:

There is no test that magically and reliably  distinguishes between Crohn's, pouchitis, or "new disease process", which is what modern researchers think chronic inflammation appearing in and above J pouches may be. In my case they chased expensive and inconclusive diagnostic tests for a few years, and then gave up, deciding effective treatment is more important for the inflammation than what to call it. The latest/newest development is that they believe it's a new disease process and not Crohn's, but it really doesn't matter since you have what you have and still need to treat it.

In addition, guess what? All the potential treatments are the same, regardless of the name or label.

In your case it seems like a number of biologics can still be attempted- Entyvio, Stelara, Humira. Entyvio has a way different mechanism of action than Remicade and is often indicated as a second line biological option. Good luck

You are absolutely right.  The Dr that told me they could was quickly dismissed by my assigned Dr's.  What a goof that guy was. 

Quick update.  On the 5th day of being in the hospital on 60 mg of solumedrol - with absolutely zero change - we tried Bactrum and I got better.  Came home on day 8.  The Bactrum treatment was only 7 days.  A few days after I ended, symptoms started to creep back, so now I'm on for another 14 days.  To answer your question SteveG regarding Humira, I have discontinued using it.  We did an efficacy test and Humira was/is in my system.  It's just not doing anything.  I would argue, it might be making me worse because I've never been this sick since having my Pouch.  I have my first infusion of Stelara on Saturday.  I am taking Lomotil 6 times a day and Immodium 6 times a day and still going 12+ times a day.  Hopefully now that I'm back on antibiotics, the frequency will go down.  I had one perfect day last week where I only went 6 times.  A glimpse into what it is to be normal.   I am also taking Visbiome probiotics. 

Thanks everyone!

Bandy

Hi Sara, i agree with u 100 percent , I don’t know if anyone is researching the pouch surgery, but they should because there shouldn’t be this many people having issues . I had UC they said it was Pan colitis, my entire intestine/colon was removed. I get these abscess every two weeks or more and they get big, the medication makes me crazy so it grows and eventually breaks , leaving me looking like something from a horror movie lol they get so big that i can’t wear pants.

I don’t know why? I don’t change my diet, like ever so I don’t know why, I do know that one time I was having a bad day and decided to have two glasses of red merlot and the next morning , the abscess lump was gone 🤷‍♀️

So they are internal abscesses?  Either way, that's awful!  Every 2 weeks?!?!  I imagine that is very painful!  That just isn't right.  Some people swear by oregano oil for infections.  Have you ever looked into that?

I have tried numerous things over the years, they are internal yes and painful. I’ve been to Mount Sinai numerous times for day surgeries . They don’t get it either 🤷‍♀️

It seems like someone in this group would have experienced something like this.  Scott F. usually has all sorts of ideas about what people post.  What does he say?

It sounds like the one thing that worked is Bactrim, but the effect stopped when the antibiotic was stopped. I don’t know about long-term Bactrim, but as SteveG has suggested, why not try Cipro (or Cipro + Flagyl)? Even if the effect doesn’t last most people can stay on them long-term. I’ve been on Cipro for about 15 years.

Pouchitis (or at least things that act like pouchitis) aren’t always visible on pouchoscopy.

I’ve been on Cipro many times and tolerate it well.  Not sure why my Dr chose bactrum.  Dr’s do say this doesn’t appear to be Pouchitis as the inflammation is only in certain areas.  One Dr described the inside of my pouch appearing as if it had been clawed.  Anyone heard this description before?  

Ischemic pouchitis can create clear lines separating inflammation from normal tissue, but I can’t tell what the doctor means by a “clawed” appearance. Ischemic pouchitis would also, I think, be unusual in a mature J-pouch. In any case, without guessing about other things you may have tried, it seems important that the Bactrim worked.

Thank you for the describing different types of Pouchitis.  I should also mention that I am microdosing with a 30:1 CBD to THC tincture 3 - 4 times a day.  Which is wonderful to help ease the 30mg of prednisone I’m still on and to help fight inflammation.  I am better!

Bandy

Brandy, I am very happy to see the words “i am better”! 🥰🥰🥰🥰 do whatever u need to do.

Thank you for your kind words!  This forum has been so supportive and helpful.  Glad I joined!

Bandy