It’s one or the other, you can’t have both. My son has Crohn’s and I have UC, the difference is that UC effects your colon only and Crohn’s effects the small and large intestines but, they didn’t have the technology back when your husband was diagnosed with UC to determine or classify the true symptoms because you couldn’t at that time go into your small intestines nor do I think you could even now. I had to swallow a little camera that took hundreds of pictures of my whole digestive system and to definitively say that after reviewing pics my small intestines were without any ulserations but my colon was mangled as well my rectum. Also, having Crohn’s doesn’t nessassaraly mean it just attacks the small intestines, it at most times attacks the colon so, it would have been hard to determine what specific disease he had, he may have had Crohn’s all along! Did they do a with barium x-ray to see if there is a blockage? Good luck and I hope he get better soon!.

Yes, he had the small bowel movement four hour test where he did drink every 1/2 hour; he had CT scan and multiple X-rays and blood work and was discharged because he went multiple times.  They said adhesions near the pouch and gave him low fiber diet and sent him home but he still not going like he used to (from a.m. to p.m.) - after being on clear and then full liquid he just really goes a lot of solid and mostly liquids after 6 p.m. (maybe 6-7 outputs of brown liquid and some soft stool).   Has burning under breastbone (but he has hiatal hernia and gerd) - fearing crohns because of the weight loss and pain. (no blood in stool though) -  Could he lose the pouch from it?  And living on meds which are quite expensive (hundreds of dollars a month) is frightening too.  Just don't know if it could take so long to clear a blockage and at the same time losing weight.  He is having colonoscopy on Friday with a blood test.  

Oh and how could it take 25 years for crohns to emerge?  that seems odd that it didn't cause problems after all those years.  But they saw all the sores and problems in the large intestine when they removed it but you are saying they could have been from crohn's?  then how could it spread to the small intestine?  

When my son had bad flare ups, it was in his colon, there were no mention of his small intestines being flared up. I’m pretty sure that they told me that besides swallowing the camera, that my eliem, which connects your small to your large intestines was without any ulcers and that this was also a determination that I didn’t have Crohn’s. I’m not a doctor but, I was just speculating that your husband may have had Crohn’s disease and that possibly he’s been in remission since his surgery. A little far fetched wouldn’t you think but, always something to think and ask about with his surgeon!.. my son was so ready to give up at one time because he was so malnourished and the pain, the pooping, not going out in fear of an episode, he decided that he was no longer going to take his remicade, (one of few treatments), any longer and started smoking marijuana, well guess what?... he’s been in remission for like 12/15 years now and looks great! So what I’m saying is, is that everyone is different, I’m still struggling with my jpouch , just trying to figure out the right combination!.. nice hearing from you, and again, prayers for your husband that he gets well soon..

Sorry didn’t see you first post til now. I know all about the weight loss and liquid diets, they had me on IV induced nutrition bags for five months, talking about pooping, I couldn’t sit on the toilet any more, I was so sore from sitting I had to fashion a donut to be able to finish out my nutrition treatments, I feel so bad for him, so long doing so good then this comes up on him, sad, we live with a terrible disease and when it’s ready to come back it comes back with a vengeance.

Hi Jaxon

Thanks for your replies - hubby is getting colonoscopy of his pouch and small intestine tomorrow a.m. - he is fearing he has crohn's - don't know if blockage can be a sign of it, but he has partial blockage for one month but he does go 5-6 times a day but not like he used to - no blood in feces -we'll see tomorrow and then next week we go to the surgeon who did his pouch 25 years ago to get that checked too.  My only concern with him is the partial blockage lingering.  When he starts eating more he gets blocked, but on full liquids he seems okay but he does have sharp pains under breastbone (four years ago he surgeon said that was from adhesions)…...it's a mess.  His biggest fear is losing the pouch if he has crohns.

Want to add that hubby had that four hour small bowel movement series and it showed blockage.  I don't know if that can indicate crohns or not.  Why did you have IV for five months?  Were you in the hospital?  My husband purchased CBD oil which is supposed to be a form of marijuana - do you think that would help?  

You are way too caught up in proper diagnosis. It’s irrelevant. It is bowel inflammation and all the treatments are the same for it. I was a UC diagnosis for 30 years and when inflammation was spotted above the J Pouch 10 years ago (and 15-16 years after I got the Pouch), my diagnosis changed to “uncertain/likely Crohn’s.” It is what it is, so do not caught up in labels for it because they really do not matter. What matters is getting proper treatment for the inflammation and any associated symptoms.

marypar posted:

Oh and how could it take 25 years for crohns to emerge?  

My small bowel inflammation above the J Pouch was  discovered 16 years after I got the Pouch and exactly 36 years after i was diagnosed with UC. Never had small bowel inflammation while I had the colon. When J Pouch is installed the biology and anatomy change. You are aware I assume that there is no backsplash valve in a J Pouch as in the colon? This likely explains my inflammation and your husband’s, perhaps. In my case I do have narrowing at the J Pouch inlet attributed to backwash stool, but I have controlled that inflammation with proper treatment. Diet is also very important due to SIBO situation created by backsplash.

Hubby just had colonoscopy today and his small intestine looks good.  Doctor took blood for a special test for crohn's and about 6 biopsies but doctor doubts it is crohn's.  Doctor also said that it can take months for partial blockage to go away and to remain on a full liquid diet (blending all foods even fish, eggs, meat) - and since he does go later in the day numerous times the blockage is slowly healing.  

The Prometheus Blood diagnostic test is as reliable as your psychic’s Crystal Ball. I had that test read by the top pathologists on the east and west coasts and was inconclusive as well as CT and MRI Enterographies which were also inconclusive. Be leery of chasing a diagnosis, lots of money in it for radiologists and pathologists who get referrals from their buddies, but these tests are notoriously unreliable and Prometheus is quasi-scientific. Best thing to do is focus on treatment. The blockage could be due to residual swelling (you haven’t given us a timeline) or scar tissue. I had numerous blockages while still swelled after takedown. Careful diet is probably a good idea.

In this case diagnosis is quite important. The proper management of recurrent obstructions due to adhesions is very different from those caused by Crohn’s-related strictures in the small bowel. Both can be frustrating diagnoses, of course, both to try to confirm and to try to manage.

Obstructions due to adhesions are quite common. When I had them after takedown there was no discussion whatsoever of Crohn’s Disease. We still do not have a timeline on all of this. My “Crohn’s related stricture”- which is actually more likely a “backsplash related stricture”, thus rendering any Crohn’s diagnosis or confirmation irrelevant per my doctor- came many, many years later. It’s possible that a Crohn’s related stricture could be the issue but without any timeline as to when the J Pouch surgery was, it is hard to say whether it’s reasonable to suspect it.

I had a series of blockages and obstructions due to adhesions months after takedown. None in the 26 years since, although my stricture which developed in 2008 does make me prone to potential blockages and when I got really bad in 2012 before changing my diet, I felt some partial blockages which passed and realized I had to change something fast. I had gained a lot of weight at that time and had poor eating habits which I cleaned up.

One last question (I promise):  now that the gastro said things look good, taking a test for crohn's (doubts he has it) and he also went into the pouch (took a biopsy) up into the small intestines and took more biopsies.  The blockage is slowly going away (didn't know it could take a long time).  So, do you think it's necessary for him to go back to his surgeon who did the surgery 25 yrs ago (Dr. Gorfine Mount Sinai) if things look good with the gastro?   I know Gorfine would probably say why are you here??  I think it's best to see the surgeon if the results show crohns?  What do you think?  

If things are resolving then there’s not much for the surgeon to do. If adhesions are believed to be responsible for repeated, intractable obstructions then surgery might be the appropriate solution. If Crohn’s disease is causing problems then the best solutions are medical, with surgery reserved for specific, serious problems only when absolutely necessary. The fear of Crohn’s should not be confused with a significant likelihood of Crohn’s.

I think a gastroenterologist is the current best bet.

Ironically Dr. Gorfine was also my surgeon, assisting in my first two surgeries with Dr. Gelernt and then performing two J Pouch revisions, in 1998 and 2000. After the 2008 testing led to suspicions of Crohn’s Disease I never went back to see him. What would be the point unless surgery is indicated as treatment, which it isn’t? Surgeons are not better equipped to assist and Gorfine would likely tell you what I have been telling you in this thread, although he would do it with more of a sense of humor. He is also close to retirement age and probably teaching at the medical school more than doing surgery these days, although that’s a guess on my part.

Gorfine, prior to my 4th surgery which was a J Pouch revision, told me that “J Pouches are like Jaguars (the British car). They are great but spend a lot of time in the shop for maintenance.” He is a humorous guy and also a very wise man, but I doubt he would add anything new to the analysis beyond the Gastro. It will also take you many months to get an appointment with him and I don’t believe that office takes insurance. You pay and then chase your insurance company down. His consultation fee would likely be hefty. I agree with Scott’s post above. The issue now is proper non surgical medical treatment and diet.

Yes, Dr. Gelernt assisted by Dr. Gorfine did my husband's surgeries in two stages in 1992 and 1993.  My husband never had any revisions (what is that by the way??) - we did make an appointment with Dr. Gorfine last week and got one in four days so that was pretty good - I know he charges a lot - it was $650 four years ago and no insurance - but he did a dilation of the anus with balloon technique and took biopsies in the office to rectify bowel movement passage which worked out.  He will be cancelling Gorfine's appointment for now.  Thank you replying and giving great advice to everyone.  This forum helps a lot.

Oh, I meant he did the dilation four years ago.  We haven't seen him since and will cancel next week's appointment - sorry about that.

marypar posted:

Yes, Dr. Gelernt assisted by Dr. Gorfine did my husband's surgeries in two stages in 1992 and 1993.  My husband never had any revisions (what is that by the way??) . 

Long story but I had a septum develop in the Pouch which was preventing me from completely evacuating the Pouch. I knew something was wrong because it felt like stool was “hitting a wall”, and it was. It was surgically corrected by Dr. Gorfine. 

I think it was probably a good idea to cancel the appointment because for $650 he would be telling you there is nothing he can do and he would probably just rubber stamp what the Gastro already said. If there is a legit surgical issue it’s at least good to have found out you can get an appointment with him that quick. So maybe not all for naught, but he will probably be retired pretty soon. He has to be close to 70 now, I am guessing.

Marypar,

My 2 step surgery was also in 1992- stage 1 April 1992 and stage 2 July 1992. The dynamic duo of Gelernt and Gorfine gave birth to many pouches including some others on this board besides me and your husband. I have very good memories of both men and their oversight of my care in the years after surgery. Gelernt was a much more serious guy than his sidekick and spoke with the voice of God. I really felt like everything that came out of his mouth was medical Gospel and it was no accident that at the time he was the best colorectal surgeon in the USA by reputation and production. He also did the first K Pouch surgery in the USA.