Crohn's after J -Pouch surgery-Symptoms

Two months isn't much time and he falls into the time period of adaptation. Some people sail through it, others have a miserable time. Most fall somewhere in the middle. Having an inflamed rectal cuff (cuffitis) is a fairly common complication. The symptoms are the same as pouchitis, except with bleeding. The treatment is mesalamine or hydrocortisone suppositories. The fact that the antibiotics did not resolve things also points to cuffitis. 

I would not conclude that he has Crohn's, at least not yet. Besides, it would not change anything. I would suggest some topical treatment for the cuffitis and maybe some antispamodics to help with the pain. 

Most people see signifigant improvement by the three month mark.

Jan

Hi Jan.Thanks for reply.About antispamodics,i just googled it cuz i know he never used that.anyway I forgot to write that  since surgery he has also problems with urinating.he noticed when he has  to urinate,it becomes even more difficult for pouch to empty...btw i was thinking he  could also have more complications than other people,since he was using his pouch immediately 3 days after his creation( decision his surgeon) ,and his rectum was not completely healed before the surgery.it was still inflamed.  :-)

I had a 1-step too and was using my pouch right away. Doesn't change much in regard to the adaptation period, since the clock starts ticking after you start using the pouch.

However, the fever is concerning. I had a persistent low grade fever after surgery that eventually spiked to 105, landing me back in the hospital a month post op. There had been a suture leak, leading to a pelvic abscess. A CT scan revealed it. If he suspects something like this going on, he should ask about imaging to rule out an abscess. If it is an abscess, it is not the end of the world, or his pouch. My abscess was in 1995 and I still have my j-pouch.

Jan

He has fever almost every day since surgery and it is usually around 100,22.they never did CT,although i suggested my parents to ask for it,cuz another doctor  mentioned it.They have just blood tests and crp.Actually the funny thing is that he didn't have 1 step surgery(cuz he was really sick and wouldn't survive all at once).instead of that  he had 2 step surgery which should have been 3 step ,but surgeon suddenly decided ( one day before j-pouch surgery)that 2.step will be the final one( cuz my brother was feeling really good with stoma,and had great blood tests,and his weight was also good,but rectum was not so good), and wanted for my brother to start using pouch immediately after creating it.anyway thanks for your advices.I 'll talk to my parents and tell them about it.I'm glad u still have your j-pouch.  

Regarding the antispasmodics- I had a terribly spasmodic pouch the first year and the antispasmodics taken 45 minutes before meals helped tremendously.  The best ones are bentyl and levsin.  They can make you feel a little loopy.  But before taking them I was going to the bathroom constantly after meals and after I began taking them it totally calmed things down.

Jan is right that Crohn's probably will not really change anything.  I have been questionable Crohn's for 10 years and have had my pouch 23, now almost 24 years.  Most of the treatments for Crohn's and pouchitis are the same.  Whatever it is he has, he has it, and it's gotta be treated.  IMHO what you call it is totally irrelevant and has been in my treatment.  My doctors gave up caring what to call it after numerous tests including CT Enterography, MRI Enterography and Prometheus interpreted by multiple pathologists on both coasts were inconclusive.  They finally said let's just treat it and forget about naming it.  That is what the focus should be.  Good luck to your twin.  Hope it isn't true what they say that one twin can feel the other's pain.

good luck to your twin, not much to add except for hope and best wishes. I am in agreement that it might be too soon to be expecting miracles although personally I don't recall having major issues immediately after, I do think there is as Jan describes it an adaptation period and it seems often patients will have variation in that time. that said I can understand your concerns, I hope that more consultation with the docs and time will smooth things out for your brother. it is ever so kind for you to seek out help on his behalf.

Hey guys thanks for your support.I hope doctors will do something about his case soon,cuz I barely sleep or eat.I just pray something changes for better.We wrote his surgeon and we're waiting for his call.You are all probably right.We are really going crazy,cuz we don't have anyone who has some experince about this kind of problems.i'm glad i found this group.I wish u all good health and luck 

Btw i found some infos about antispamodics,especially bentyl and levsin.Our doctors(in Bosnia and Herzegowina)never mentioned group of those medications. I forgot to say that my brother never had leaks.his stool is too thick,which makes things worse.

Is he drinking enough water? If his urine is light-colored the answer is probably "yes," but otherwise that might help.

No.His urine isn't light colored.But he has lost even more weight in last days.he is like 185 tall and has maybe now  50 kg or less,cuz he can't eat( cuz of pain down,and whatever he eats it is hard to empty it),so he  eats only a soup or drinks a smoothie.we called now doctor to do something, his life is in dangerous,cuz of his weight.doctor said my brother should use suppositories till monday at least.

they already did CT and it was ok.Blood tests are ok.they did c-diff test and it's ok.they don' t have flexible sigmoid cuz they had to send it for repair.and nobody else(other hospitals and doctors)want to do it,cuz it is risky.I know everyone are talking about Celeveland Clinique but we live in Bosnia and Herzegowina and we can't go there,like never ever.

My and my parents don't know what to do anymore. :-( 

btw sorry for my bad english.it's my second language

If his urine is dark, or he isn't peeing at all then it is urgent that he get more fluid. If he can't get enough by drinking water then perhaps he could get IV (intravenous) fluid at an emergency department. That won't fix the whole problem, but it will help keep it from causing extra problems.

^ yes. fully agreed. one of the most common problems patients who have their colon removed is with hydration. we don't realize how important the colon is to recycling water within our body. absence of colon demands extra fluids to compensate for the water loss. the abdominal discomfort makes the mind resist inputting anything but see if you can encourage him to up his fluid intake that might help, until they investigate further and dehydration in and of itself can also be dangerous, so maybe an Emergency room trip would be helpful.  

If he can tolerate soups and smoothies, then eating isn't his problem. You can live and thrive on a liquid diet, as long as it contains the right nutrients. But, if he is not absorbing those nutrients, something is going on. 

Imaging does not catch everything, especially soft tissue issues. Sometimes exploratory surgery is eventually needed, but that is a last resort, and rightly so. If things continue to deteriorate, then TPN (total parental nutrition) via a central IV catheter, is a good option while they figure this mess out. It is not a long term solution, but it can be a life-saver. This is a treatment that should be available pretty much anywhere there is a hospital.

Jan

Hey guys.I really appreciate your advices and help.When it comes to floiud intake,he is drinking fluid all the time.His urine has normal colour.he can't urinate when stool stays in pouch,and because he can't regularly empty it,most of the time is resident stool inside of it.Than, because it can' be emptied,he has pressure and urgency down where  anus and rectum are.Even if he is on liquid food,he can't empty it.he is eatting  soups 2 months already (since surgery) ,so that's why he lost so much weight and all fat.Before surgery he was skiny.Also the problem is,hight temperature and no energy.he lost so much,because he goes every day around 30 times to try to push and empty his pouch,cuz of terrible pressure and pain down.I know t is hard for u to believe,but they told us they don't have TPN,even before surgery.Also they don't have flexible sigmoid.And they said they don't habe balloon dilatation.So even if we go to ER,it is just waste of time.We actually decided to go to another country,which will be so crazy expensive,but whole situation left us no choice.I hope that doctors there will find a good solution for him.He is ready even to go to permanent ileostomy,cuz he is so afraid he'll loose his life,since every day he is loosing more more weight and energy and nobody from doctors in our country is ready to help us.

btw i do really wish u all a happy new year 

Oh my! This really does sound like very antiquated facilities. TPN has been around for 30 years at least! If he intends to stay there, an ileostomy may be his best choice in the long run, since they are not equipped to handle after care for him. However, my concern would be that he needs more than an ileostomy, because something is brewing in there that needs to be dealt with. Opening him up without being ready to deal with what they find could make things worse. What is the closest country to him with modern facilities and possibly a university hospital?

Jan

i would say they live in stone age..I aksed myself 100 times,how could hospital be without TPN? they told me they have like fresubin drinks and other liquids  with high proteins  and carbohydrates  ingredients.But that's not always a solution.U wouldn't believe how hospitals look like but never mind.The closest one is in Croatia or Serbia but they are not so interested in our case.We tried to contact them but for me it seems they don't want to repair someone else's mess.We are now in contact with Turkey-Acibadem Clinic in Istanbul since they checked all papers translated in english and would like to do their own tests to know what to do as next step.I heard they are really good,but really expensive since our health insurance doesn't cover anything outside our country.

btw Jan thanks for your help.I saw u're always trying to help people.That's really nice of u.

Can u get him to the Hadassah Hospital in Isreal . They have an extensive IBD center and GI/surgeons that specialize in cases like your brother. 

Being without insurance coverage in another country with these kinds of issues is scary. Perhaps the Bosnian insurers will make some exception and provide coverage if the Turkish specialists find something the Bosnian specialists overlooked, or rendered treatment that the Bosnian ones couldn't provide??? In any event good luck and hope you can solve this dilemma for your brother.

allykat,we already contacted acibadem clinic,since they know what's happenning since July 2015.But thanks for your help. :-) 

CTbarrister,u are right.It is scary without insurance,but we are working on that.I hope we get some help (financial) before we get there.It depends on our doctors.If they sign that they can not help us anymore,our country would cover maybe 10-20 %.But if they don't sign it,we have to pay everything.

Is there anyone who colud help me to contact the best doctor  for J-pouch surgeries at Cleveland Clinic ? Thx

I have not been there myself, but from what ive read from many others is that the GI known as the jpouch guru is Dr Bo Shen. I believe the surgeon who he often works with is Dr Remzi. good luck.