I’d guess that this is adhesion-related rather than a hernia, but your doctor should be able to get a better idea. I’d recommend focusing on getting the right diagnosis first. Only then can you tell if the treatment is a good idea or not.

thanks scott--i guess thats the issue--who diagnoses this? My GI basically said it wasn't his problem--is it a surgeon who would diagnose adhesions?

You might want to talk to the surgeon who did the original J-pouch. That person might have a better idea of what's going on and what can be done to resolve it.  You're obviously in a lot of pain.  Good luck and don't give up.

Technically a surgeon will try to avoid diagnosing adhesions, but it’s nevertheless a surgeon who you should consult. 

just a little update--had my scope today. GI said it sounds like adhesions around the small bowel and to switch to fluids until it feels better. He didn't give me anything for pain management in the short term and I had to be wheeled out in a wheel chair from my appointment I was in so much pain.  It's so frustrating! Anyway, if this happens this often, it seems i'm going to need to plan to have 4 days off work every 6 weeks to deal with it. What a nightmare. I think I will try to get a referral to a colorectal surgeon to see if anything else can be done. Mine retired years ago. Any diet/lifestyle changes in the meantime would be appreciated though. 

Yeah. See a surgeon. This does not sound like a hernia at all. Problematic adhesions are diagnosed by ruling our other causes. Surgical release is the only solution. Liquid diet just reduces your pain when your intestines are blocked and swollen. Your pain seems pretty serious, so I would get a referral soon. It does not have to be with your original surgeon, or even a colorectal surgeon, at least not not right away.

Jan

Me again. Good grief--just spent 2 days in the ER as the pain went crazy and my bowels partially obstructed at the 'pinch site' I mentioned above. They said it was a mechanical bowel obstruction but didn't know why and couldn't be bothered to find out why. I had a surgeon consult who said "adhesions don't cause pain" so it must be your diet (I've been on clear fluids for a week prior to this). What??  Aren't adhesions the primary reason for a lot of our pain? The ER dr. hinted the surgeons were blowing me off and I indeed had a mechanical bowel obstruction that I should follow up with my GI about who can connect me with a surgeon.  But, my Gi is the one who put me on clear fluids the week before and said "just eat less fiber". At the ER, once I could keep water down and didn't need pain meds, they sent me home. The ER dr was very sympathetic, the surgeons, kind of jerks. Now, 2 days home and still on clear fluids, the pain and pinch is returning and I'm pretty sure I'm going to end up back there. I took 2 tramadols and am still at a 5 pain level out of 10.   Sorry to vent, sometimes I just feel no one listens to us. My old GI and surgeon retired years ago and I KNOW would be looking after me much better than this. I don't have a history with these new docs, so sometimes I think they are more likely to write you off as a chronic complainer. How sick do we need to get before they pay attention? Anyone ever had this experience? Sorry to vent--I'm just getting frustrated. 

I'm so sorry to hear about your recent ER experience. You shouldn't have to be experiencing these issues.  The only thing I can suggest is to try and find a new doctor. If you go back to the ER, you might ask that doctor who he or she could recommend. Maybe try an internet search?  Ask friends who they might suggest?  Maybe someone with better ideas will respond. I know it's almost impossible to fight a battle when you're sick, but you need to keep trying to find the right doctor.  Maybe a relative or friend could help you with this search.  Good luck. 

Another update. I ended up back in the ER and finally got admitted for 3 days with that dreadful ng tube. It was a mechanical obstruction. Been home for 10 days and now it is back. I keep going on clear fluids and its ok, but every time i try any solid food (like toast) it comes back. Has anyone had to have surgery for recurring mechanical obstructions? I can't see how this is going to go away on its own and not sure how long I can live on fluids....!

Surgery is definitely done for an obstruction that won’t clear on its own. It’s avoided whenever possible since it's usually unnecessary, but you may have hit the jackpot.

I'm hoping that you can find a sympathetic doctor that you trust. I'll keep you in my thoughts. Hang in there.

Me again-admitted to hospital for the THIRD time in a month. This is the second surgeon I’ve seen. I’m being sent home for the third time with a “let’s hope it doesn’t come back” approach. The blockage cleared but I’m still in a lot of pain - they said the bowel can swell after obstructions which is causing the pain. I asked if it could come back and surgeon said “most likely, could be a week or a month or a year”. Yeah, thanks. How many admissions does one need before they say ‘this isn’t going away, I guess we better fix it.” I’m soooooo frustrated. Thank u all for listening-I’d lose my marbles completely without this group.

(FYI for those that suggested finding a new doctor—I’m in Canada and one can’t see a specialist without a referra,  so it’s not so easy. Maybe it is different in the US)

Duck11, wow what a nightmare. Maybe this is a stupid question, but can't you tell one of these surgeons that you would like to have the adhesion or adhesions removed. I have a suspected one that my GI ordered an x-ray to check. I have to drink some stuff, prob. barium, and they watch how it goes though the system. I've had 3 blockages that eventually unblocked on their own. Very painful. Two of the times I was given antibiotics, once by the hosp. , once from the surgeon, when my infection markers were really to low to be giving antibiotics. The third time I gutted it out on my own.  I can  imagine what you are going through. That's just rediculous. I hope you find a solution soon. 

Aimee

This sounds pretty miserable, Duck. Even if you want to try surgery to improve this situation, you’re better off doing it when it’s not an emergency if at all possible. Can you get your regular doctor to refer you for an office consultation with a surgeon?

Hi all,

Thanks for your support-im home now with strong pain killers. They did a scan and the blockage has cleared but the bowel is swollen and sore-I didn't know that could happen post obstruction and it is PAINFUL! I can indeed follow up with the surgeons. They just said that until obstructions become chronic, they generally try to avoid surgery since it can be pretty complicated for us pouchies. I cant believe how much this post-obstruction swelling hurts though. Anyone ever had that-how long before it goes away? Fingers crossed the obstruction won't come back......

Um, what do they consider “chronic?”

I've had post-obstruction swelling, and yes it really hurts. Two weeks ago I was in the hospital for two days with a blockage that presented about three days after I was released from the hospital for my ileostomy surgery. The post-obstruction swelling lasted about 24 hours and hurt lick heck with terrible cramps. I was in the hospital for two days with the blockage, which cleared on its own. Try to hang in there for a day or so and the pain should start to go away. Be sure to eat the proper diet until things calm down.

Careful with the pain killers if they are opioids, since opioids could contribute to another blockage by slowing down your intestines.  

Thanks all--I think it is starting to feel a bit better finally. I'm going to stay on a low residue diet for a couple of weeks to be safe. After 3 times in 1 month, I'm just so worried it will come back. I have an 11 week old baby so the timing of these blockages is extra horrible. Thank goodness for Grandma's!

Scott--I'm not sure the definition of chronic. He kind of said "if you start to be here regularly", so maybe  every 5 or 6 weeks? He just really made it sound like surgery is a last resort, and can end up causing more problems.

Surgery really is a last resort, and it can indeed cause more problems. OTOH there are huge differences of opinion over when surgery is warranted, and you’ve gotten pretty murky guidance. It would be reasonable to ask for more clarity.

I’m now in hospital again with an obstruction for the 4th time in 5 weeks. My god!!!! I started a new post about surgery experiences for adhesions since I think I don’t have a choice but to have these adhesions snipped. I just wanted to Thank u all for your support here. 

I'm so sorry to hear this.  I can't even imagine what you are going though. Try and hang in there the best you can, and I'll be sending healing thoughts. I hope you have friends or family there to support you.  

I am going home today no better off than before. I thought they would do surgery or offer it electively but I have to ‘wait and see’. I have a follow up appt. to discuss elective surgery but it’s two months away. I’ll have many more admissions by then at this rate. I’m so down about this and feel so let down by our health system. I can’t believe it is this complicated to operate on us j pouchers that this solution of putting me through this is better. Arg 

Duck, so sorry. I don't know that any of our healthcare systems are bad or it's just more people having the kind of problems we have. I'm in the US and it takes months to see my GI or to schedule surgeries also. This my sound stupid, but maybe investing in a good blender of some sort might be a good idea at this point. I've been obstructed, the pain is very ugly. I sending good thoughts your way. I wish I had some good advise to give you. Please keep use informed on what going on with you.

Aimee

I’m back in the hospital with obstruction number 5 😡 I tried to tough it out at home for four days with clear fluids but the pain is just too brutal. Thanks everybody for following this awful journey with me. I do finally have a dedicated colo-reveal surgeon who is helping me navigate this. 

Glad to hear that you finally might have some help. Hang in there and let's hope this new person can provide some answers, and some relief.  I'll be sending positive thoughts.

Hi all,

I thought I'd post an update and ask for more good vibes I was in the ER this weekend again and my colorectal surgeon arranged a ct enterography and concluded "there is nothing wrong with me" after all this--the scan was clear. No explanation for my pain and multi hospital admissions and ER visits. Just a blunt "go see your gastro" who, if you recall at the start of this saga, said "go see a surgeon". I'm being passed around like a beach ball with no answers other than what seems like a life of chronic pain. I've had very scan imaginable that all come up normal, and no explanation for my symptoms. I am so down, beyond down, as I thought this surgeon was helping get to the bottom of it and all of a sudden has jumped ship with no explanation. I have no explanation for my chronic pain and these attacks (that to this point I was told were SBO), and no where left to go. I'm desperate for suggestions here so fire away if you have any. 

I don't know what is possible in Canada, but if it's possible, you should try and see another surgeon or GI doc.  You might have to wait a while for an appointment, but make an appointment anyway. Are there any university hospitals near you? They like the challenging stuff.  At this point it sounds like the system has let you down. The good news is that somewhere there is a compassionate doctor who is willing to work with you to try and resolve this. Go find him or her.

How incredibly difficult this must be for you. My heart breaks thinking about your situation. It's very difficult to advocate for yourself when you're sick. I hope there are family members or friends that can give you moral support, and that can act as an advocate for you with the medical people.

Good luck with your situation. Its not fair, but try to stick with it and find another doctor. I'll continue to send you healing thoughts.