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I'm in the hospital for the 2nd time in 2 months.  Going 20 times a day accompanied by incontinence.  Pure liquid.  On day 4 of getting 60mg of steroids.  Nothing is working.  Scope revealed inflammation.  Was recently diagnosed with Crohn's and have been taking Humira for 3.5 months.  Have never been this bad.  Already tried remicade and inflectra.  Have had pouch for 10 years.  Am terrified that I am losing my pouch as not even steroids, my faithful go-to for 40 years is not touching this.  Had UC since 16yrs old.  Am 56.  Please, if anyone has gone through this, please respond. 

Bandy

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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

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

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.

@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

Last edited by CTBarrister

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 😊😊

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