My son had his second takedown on Jan28. Except for having a blockage, everything went fine! We were all excited and happy and feeling confident that everything was good. Wrong! He Is still on oxy, complaining of lots of pain. Had a CT scan last Friday, he has another abscess in exactly the same spot as last year! Its a small collection but a collection just the same. I cant believe this. They didnt see a fistula but i believe its just too small see yet. Just like we went through in Dec 2014. Right now we are waiting to hear from our surgeon who is away. The covering doc put him on an antibiotic for now but they will be doing another drain by the end of the week. When will it end!
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Oh my! Hopefully this is just the old abscess reforming because it was never totally eradicated. If there were some surviving bacteria (or spores if it is anaerobic). If his resistance was beaten down (and it likely was), the abscess could relapse. When I had my presacral abscess, I had the drain for a month.
Fingers crossed this is just another bump in the road (damn it)!
Hi jeffsmom I'm so sorry to hear about you son situation I hope everything gets better for him I'm sure he's been through enough already... Prayers with you all
BTW how do you know if you have blockage ? I'm so new to having a jpouch thing ... I don't know what to feel or know honestly..,
Sonny, you would be feeling crappy. Not wanting to eat. And when you do eat you will most likly throw it back up. Also you wont be pooping. Hopefully you dont have one. Jeff was on clear liquids for four weeks post-op when he had his. Nothing with this kud has been easy!
Oh Jan i hope you are right. He is so worn down. Last time he had the drain in for two months. Not fun. Interesting, the ct report said that the collection was possibly a gas forming organism. What ever it is, i want it gone, now! Haha.
Jeffsmom.... I ate a chopped steak earlier today and I was hungry and I don't if I ate too much or too fast not chewing enough and now I have like constipation symptoms but no nausea or crappy feeling is that blockage ? Sorry for bothering you
Sonny, it probably is just a partial obstruction. Drink lots of fluids, stop any fiber and bowel slowers, and keep moving. You should be OK. But call your doc if you develop a lot of Bdominal pain.
"A gas forming organism" is likely of the clostridium species, which are anaerobic coliforms and are spore forming. C. difficile is an example, but don't panic, there are many clostridium species.
so I wonder if he is developing abscesses presumably from a fistula, have they thought about amending his diagnosis? I realize you already have too much on your plate but here's the thing that an amended dx might bring, a biologic med that help preclude any further trips down this road.
on first blush disappointing as one thought hey I'm done with meds now that ive sacrificed my colon, but the reality of improved quality of life by squashing more fistula formation would be the positive trade off.
Sonny, never a bother! I think Jan may have answered your question better than I can!
I had my j pouch 14 years ago and doing OK. First, this sounds like Jeff has a pretty complicated situation and he seems pretty young for this surgery. So, his situation is probably pretty unique and many suggestions may not apply to him. Because it's so complicated, i.e., those that i have not experienced, i have only marginal suggestions. First, i recommend getting in touch and talking with the surgeon and making sure he knows what's going on-exactly and that he needs to help. He should know best what's going on and should be on top of it.
Second, if and when you take down again, i recommend a lot of imodium (loperamide) to slow things down. Ask the doc, naturally, about its use, etc.. Gradually, you can taper off or slow down, but i still take them now and then and overnight, etc. I think some people take them regularly. Any time there's a flare up or problems, they usually help settle things down.
WillR6, thank you for your kind note. Yes, my son is young to be going through all,of this. It's sad. Last May he was diagnos d with PSC on top of everything else. So he is a very complicated case. He seems to get all the worst complications.
We will be speaking with his surgeon tomorrow. He has been away this week. We went in to see his associate yesterday just to make sure this abscess was not making him sick. The doctor was going to put him in the hospital if he was running a Temp. Fortunately he was not. So right now we are in a holding pattern and we'll see what comes next.
it never ends!
As on right now, the plan is to insert a Rectal drain. I really don't know how he is tolerating all of this. Everything is so painful and invasive. It will take a week or two before this happens. Apparently IR is slow! So we wait, I guess! Thank you everyone for your input and suggestions. You guys keep me a little bit calmer. There are times I feel like we are alone in this journey, but then, I come here, and don't feel alone at all! Thank you!
Hmmm... When I had to have a drain put in by interventional radiology, it was done the same day as the diagnosis and done on an emergency basis. I didn't return from radiology until after midnight. But, maybe things were different for me, as I had a very high fever.
My surgeon was even out of the country on vacation and just consulted by phone. They did not wait for him to return.
Jeffsmom our prayers are with you both stay strong .��������
Jan, i know. When we were in NJ it was done that day as well. But we are in NY now and thing do work differently. Jeff does not general run fevers so thats a good thing. They want some additional blood work done before IR will even give us an apt. Which right now is just fibe because husband and i are going away together for the first time in five years. Generally when i go away i go alone. He thinks he will miss something at wirk if he takes off, LOL. Workahalics get on my nerves! Life is too short!
My husband does not believe in vacay so either, enjoy!
Not sure if the lack of fevers is good or bad, since it is one of the clues they use to determine what is going on. I had a bunch of labs before my drain too. I even had to wait for plasma transfusions to reverse the coumadin I was on before they could begin.
Still, it is good news that they can sit on this for a while, so you and DH can get a respite (if that is truly possible while son is in the hospital!). At least you know he is in a good place if something else comes up!
My husband was a big believer in vacations and did not care if he missed something. He would check email for urgent stuff when he could, otherwise it could wait. Nobody is that important. He figured they needed to manage without him. What if he was laid up for a prolonged period? They'd be stuck if they did not know how to manage.
Ohhhh...your poor son! All this just seems so unfair! Hope everyone can hang in there for one more complication!! Sending prayers and healing thoughts.
I am so, so sorry...you & Jeff cannot seem to catch a break!
Poor kid. How is he taking all of this? Resigned or angry? How are you doing?
Do not, I repeat, do not forget to eat well, take care of your health (he needs you healthy) and go for walks (you need to release the stress)...take him out to walk too if he can...bedrest is a b--ch and destroys all of the muscles that he has been rebuilding after the last period...get him walking and out of the house.
Go, go on vacation with hubby, you need some time out of the loop and away from the stress...you will feel better to face whatever Jeff's health situation has to throw at you.
By the way...is there some sort of yoga school or institue anywhere around you? He might benefit from some deep breathing exercises to calm him and manage both his body and mind...just a thought (I do not do it but picked up some tricks on the internet and they help a lot).
Huge hugs and hopes for a better outcome
Jan, I'm cracking up reading your post! jeffrey not in the hospital, thankfully! That's why we will go to Florida. If he was in the hospital, I would never leave him. So that's good news! My husband's attitude about work is the place can't survive with out him! Mind you, he has a good job and all, but he is not that high up on the food chain! He is not the CEO or chief IT officer! But he is highly competitive. When he retires, I might just kill him, or else, I might get a job! He is either working or on the couch with the TV and a book! He has two speeds, LOL!
and God forbid, if something happens, we are only one n FL so it's easy enough to get back. And my sister in law is around. Not that she is great in a crisis, but Jeffrey would be fine. He is good in a crisis. Thank God for cell phones! I'm always reachable!
Sharon there is a great yoga studio right in town, i go all the time but jeff is a pain in the butt! He wont go. I cant force him but i think it would help him. But kids, they never listen to you!
Maybe when he is in the hospital you can have a nice (cute?) instructor come to see him and give him some exercises that he can do when stuck in bed...firstly it is always a good distraction to have a new visitor and secondly it could help him get out of his head and discover something new (and someone?)...
Not match making or anything but the kid really needs something else to occupy his mind!
I remember in the middle of my k pouch creation surgeries after a very long series of failed attempts at repair surgery and a gazillion painful and embarassing tests some had the bright idea to send me a singing telegram...guy dressed up in a monkey suit...woke up about 3 days post op to find this guy gently shaking me awake and desperate to sing his song...I couldn't stop laughing and crying...gave me the galloping-happies for days and days...