Hi again everyone

Mark had his takedown 2 weeks ago and has been suffering terrible cramps since. He says it feels like he needs to pass gas but can't and the cramps seem to get worse of a night. He doesn't pass gas at all during the day and only seems to pass small amounts while laying down. He hasn't felt like he has emptied properly since this morning ( 14 hours ago )and the pressure is intense. Are these cramps normal? Do they get less painful? Is there anything he can do to help things?

Thanks for listening
Ange

Hi Ange,

I had similar cramping. If the cramping originates from the incision site and last a couple of seconds, then it's gas that he's not passing through. That will taper off soon. I had my takedown on 12/16 and the cramping literally stopped on 12/31. I actually remember the date because it was the afternoon of New Years Eve. The doctor did confirm that they'd go away on their own. So tell him to hang in there.

I then started taking a Fiber supplement (Benefiber) to help with the frequency of BMs as I was going at least 10+ a day. I started getting extremely excruitiating pain or cramping (similar to the other) that would last for about 10 seconds or so. The pain would be more towards the pouch area. At first, I thought it was part of the healing process but by mid-week I knew something was wrong. This was not normal. I finally put two & two together and realized it was the fiber supplement. Once I stopped it, the pain went again. Like a light switch.

Given his recent surgery, I would think he's still going through the initial cramping stage from the incision site as I mentioned above. It will clear on its own. I mentioned the other scenario just in case the same happens to him as it did with me.

Take care,
Betty

Hi Ange

I too had similar cramping feelings for about 14 days after my first surgery and about the same length of time after my takedown in Nov. Mine felt like waves of pain that seem to originate from my sides heading towards my middle, nearer to my incision. I had asked the doctor about this after the first surgery because I too couldn't really pass gas or empty the j-pouch sufficiently, I always felt there was more in there. My doc did say that the pains would go away, which they did, and that there was the possibility that there might have been some trapped air from the surgery which would dissipate on it's own. Also, whenever I eat lettuce, I get a real heartburn/gas pain as it slowly moves through the small intestine. Therefore I have stopped eating heavy roughage, relying now on apple sauce, bananas, rice, etc. and will be asking my doc about the lettuce thing when I see him in Feb for my 3 month check up.

Tell Mark to hang in there, the pains will go away literally from one day to the next.

Oh, also for the first 2-3 weeks, it was hell trying to go to the bathroom. The closest I can describe it was feeling like I was egg bound. I found that a sitz bath really helped, they're only about $11 at a medical supply store. But eventually even that feeling went away and now I am feeling pretty good.

Good luck,
Alyson

Hi everyone

Things have gotten worse since i posted last. Yesterday the cramps got so bad they were coming on every couple of minutes and after everything that happened last year i took Mark back to the hospital, they did some scans and xrays and looks like there is a blockage at the sight where the ends were joined, He has been taken back to clear fluids and they are managing the pain, but as yet i haven't seen his Dr to really get an info on what the plan is. seems like it could be too narrow for solid foods to pass through or it could just be due to swelling of the join. I feel like he's been left in limbo at the moment, i haven't a clue where things go from here, He has passed some really big fluid bowel actions through the day and the cramps aren't as frequent but are still there. I guess because i don't know the surgeons thoughts i'm worried that once he is put back on a normal diet this will happen again. He had reservations about going through the takedown and really was doing so well with the stoma ( felt the best he had in years ) And now after all the problems with the leak, fistula abcess wound this time last year it all feels too raw. He is marvelous and i am very proud of him but it's scarey to think there problems might never end

Thanks for listening
Ange

The ostomy site is the most common site for obstructions and usually it is due to kinking at that location because of adhesions, which are scar tissue formations that can cause "hang ups." The good news is that this is not necessarily a bad omen and that he is doomed to recurring obstructions. Usually, it is a one time occurrence and as his body acclimates to the new "plumbing," things will settle down. Local swelling can also contribute to this and the swelling would get worse with the obstruction. It is very seldom due to food, unless he is not chewing at all.

I know it seems like this will never end, but really, there will be a time when your lives do not revolve around doctors and hospitals.

Jan

Thanks Jan,
He is doing much better today, the cramps have eased right back and he has been eating a soft diet today and things are moving through good. The Dr said that it was more than likely the weetbix he was eating for breakfast that clogged things up... We werent told he should lay of high fibre foods, So koolfsuchic the fibre thing is a problem lol anyway i'm hoping to have him home tomorrow with a list of foods to avoid!!

One question... If this happens again is there anything we could do to get things going through without having to go back to the hospital? I hope that's not too much of a stupid question!

I will say it again... this site is wonderful and i'm so very greatful to have kind people like you all here to share your stories and support us thanks Ange xx

I had a blockage early on after takedown (over 7 years ago) and none since then. It was caused by my small intestine twisting on itself. My surgeon has told others that when they feel as though they are confronted with a blockage to get in the car and drive (or have someone drive them) over railroad tracks or other very bumpy surfaces! Maybe jumping up and down would produce the same results! Or rolling from side to side! Anyway, it would be worth a try.

The main thing is to stop solid foods, increase fluids, and move around a lot.

And, he probably will not need to avoid high fiber foods indefinitely, but mostly just when recuperating from this obstruction. Once he becomes more adventurous, he needs to remember MODERATION and CHEW!

Jan

two words...grape juice.

Hi Ange! Hope Mark is feeling better now. Geez, you guys like doing things the hard way. The first few weeks after takedown can be extremely rough, even without complications, but severe pain should not be ignored. You know that!

Can Mark eat solids now? If so, it's best to stick to bland foods for the time being (check the j-pouch dietary guidelines - there's a link near the top of this page). Also, if Mark loves Weet Bix, Sanitarium makes them with oats, which has lots of soluble fibre (really good for the j-pouch, but only after Mark has gotten over the blockage issues).

Best wishes to you both and happy Australia day!

Cheers Everyone your imput and advice is always great to read.
Hi Nikki, Mark came home yesterday and so far seems to be doing well! Fingers crossed it stays that way. Yes he is back on solid foods, although on a low fibre diet at the moment.
he is very tired but i guess that is the broken sleep. he is also complaining of a really sore tail bone ( any ideas??)
things are passing through normally and the cramps only come when he feels he needs to empty, So i am very pleased with the way things are going. Great to have him home, great not to have to drive to the hospital daily, great to see him smile

Ange xx

Pay attention to Jan's advice. It may take 3 months or more for everything to settle in. Keep followups with your surgeon. Don't be surprised about anastomotic site strictures that may need to be dilated. I did daily dilations with my big finger for several weeks several months after takedown of the iliostomy. Life does get better. Chew, walk, and hydrate.

Well Hi again everyone,
Pity i couldn't say everything is going great, but seems with our luck things never go great. Mark was home 2 days and after some horrific pain was admitted back into hospital on the 28th Jan. Seems he has another leak and fistula in the same spot as last year. Mark's surgeon is on holidays ( same as last year) He doesn't come back till the 15th Feb it seems no-one else at the hospital wants to deal with this mess. He went surgery to clean out the abcess and a drain put in ( which got pulled out by a night nurse 2 days later)i feel like they have been giving us the run around and we don't get told all the information at once, just bits and pieces at a time. And as mark isn't his patient the other surgeon at the hospital doesn't really want to deal with us, he just put mark on IV antibiotics to keep infection down and left him for a week. Mark has stated many many times he has had enough and just wants his illeostomy back, but they keep telling him it's too risky to do anything at the moment. They got mark on oral flagyl and curam duo forte and since there was no sign of infection sent him home saying they will wait till his Surgeon comes back to decide what to do. I am so frustrated, He is home (which is great as the hospital is an hours drive away and the daily trips are hell for the kids and I ) But he has an open fistula which is leaking crap most of the time, it's painful and a little nerve racking hoping he doesn't get any type of infection for the next week or so.
I have felt like we have been palmed off and that Mark's case is all too hard for someone to take over. Considering the hell Mark went through a year ago we were very hesitant to go through with the take down and now in hindsight we wish he still had the illeostomy. OH GOD WHAT WERE WE THINKING! The most frustrating part is the limbo we are living in right now, nothing has been done and nothing is being done. Mark thinks his GI is going to try and talk him into mending the leak and fistula but he has just had enough, this is no life, leak after leak and trouble after trouble. At least with the ostomy he was fit, healthy, happy and working, A little Skin irritation at times was the biggest drama he had.

Thanks for listening guys we will keep you posted
Ange xx

The good news is that as long as this fistula is draining, the risk of abscess is low. The bad news is that the longer the fistula remains, the less likely it is to be resolved. But, in the grand scheme of things, a few weeks does not really matter. Most surgeons do not want to mess around with complications when a patient is still under another doctor's care, unless it is an emergency.

If Mark is certain that he has had enough, he will just need to keep saying no to whatever his surgeon suggests, other than returning to an ileostomy. The surgeon could refuse to remove the pouch if he feels that it really is not the right thing to do though, and in that case, you will need to ask him to discharge him as a patient and then find a surgeon who will do as you wish. It would seem like a no brainer, but often it can be hard to find someone willing to take over.

Good luck and I hope you guys get some answers soon.

Jan

Dear Ange and Mark,

I am so, so sorry to hear that this is happening again.

Jan (as always) has given you very sensible advice. And I have also found, from my personal experience with public hospitals and colorectal surgeons, that it is very hard to find someone willing to take over.

How is Mark's pain at the moment?