Baaaack! 9 months on post ileostomy formation

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Ziggs
Regular Member


Date Joined Sep 2016
Total Posts : 55
   Posted 7/26/2017 7:15 PM (GMT -6)   
Soo 9 months ago I had my ileostomy formed, going great, got a good routine and everything is fine..
..Apart from the continuing abdominal pains. Like after everything I eat and its not because I have dont eat for ages then eat a lot or dont drink or whatever.

They can get really really bad like my UC sharp spasms I used to have or waves of cramping.
It gets really bad for a week or two at a time similar to a flare up and this has gone on for 9 months since surgery­čśú
I highly doubt its anything sinister like crohns hiding away somewhere, my surgeons and GI have always been very certain of it being UC. But it is a worry.

Anyways, I just wanna know if anyone with UC who has had ileostomy surgery - did the post op pain last this long? I'm just getting pretty sick of it now as I've got a lot going on.
Replies very appreciated right now. Anyone in the UK on the NHS should know how sort of left behind you can feel with the 3+ month long waiting times.

Ziggs
Regular Member


Date Joined Sep 2016
Total Posts : 55
   Posted 7/26/2017 7:24 PM (GMT -6)   
*My stoma output is fine, I dont get blockages, forgot to add - late at night mind racing bad stomach pains.
Normal thickness, stress makes it watery, all the norm.
Stoma doesnt hurt but sometimes I get stabbing pains inside it, stoma nurse didnt seem bothered.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16719
   Posted 7/26/2017 7:56 PM (GMT -6)   
Do you have a perm ileo or are you going on with further surgeries to get a jpouch? I think after 9 months, you should be living pain free. That's a very long time to deal with pain, and surgical pain should have resolved within a few weeks. Other pains may go on for a while longer, but I'd think after 3 month you should be feeling confident to eat and do whatever you want. What you describe with cramping sounds similar to blockage. I wonder if there's a kink? Do you ever have periods where it's not active for a long time when you're having these spasms? Have you had any follow up since your surgery? Scans or scopes? With a jpouch, you go back a few times after reconnect to check on the pouch. We also have a contrast scan to check the pouch. I had the end ileo for 12 weeks and I was free of pain after a couple weeks. Then I had a temp, which I didn't have pain with, but it was difficult to manage regardless. Then after jpouch, I didn't have a lot of pain, but I did have an adjustment to life with a pouch. A few times since surgery I've had minor cramping, but I think it was from ladies issues.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 7/26/2017 8:23 PM (GMT -6)   
Could be adhesions that are affecting your ostomy. Kind like pulling on your small intestine and partially kinking it.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Ziggs
Regular Member


Date Joined Sep 2016
Total Posts : 55
   Posted 7/27/2017 3:35 AM (GMT -6)   
Adhesions are definetly up there in my suspicions, annoying that the only way to see them is more surgery.
As with when the pain comes - I dont really see a pattern, it comes in flare ups for a week or two where its really bad and after everything I eat. My stoma seems to become quite inactive during mid day and won't poop from around 12 til 4pm but I think thats normal for my body. Feels like a lot of pressure behind the stoma at times.
One type of pain that I get frequently is the kind that takes your breath away because its so bad, all around the middle area of my abdo and it comes with very sharp pains.
Some weeks its very very mild and only have one day out of the week where its very bad.
My doctors have said it would take a long time to recover but as you said I think its gone on a bit too long now. They seem to be pushing it away and not really listening hence why I have had no scans and no scopes.
I'm a 16 year old female and had a loop ileo formed, still have part of my rectum so I can get a jpouch if I want to in the future.

Some of the cramping could be due to periods and ladies issues. My GP(GP is just the family doctor you can go to with any concerns and they can refer you to people) suspects maybe a bit of bowel has stuck to a part of my reproductive system and thats why it hurts so much in my cycle(all month cramping) or it's endometriosis. Been referred to a gyno doc but will have to wait 6months or more to see them.

Thank you for your replies

Post Edited (Ziggs) : 7/27/2017 2:40:06 AM (GMT-6)


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 7/27/2017 6:34 AM (GMT -6)   
You can get an MRI to check for adhesions, they are not always accurate in finding them because organs move and hide the adhesions.

As you ostomy heals it will slow down output and not go all times of the day.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10559
   Posted 7/27/2017 7:46 AM (GMT -6)   
All surgical pain should be gone by the 9 month mark. (It takes longer than a few weeks to fully go away though; more like 4-6 months, at least if you've had open surgery.)

Pain/pressure behind the stoma is probably more normal than the other types of pain you are describing. Basically the stoma has to be angled sharply to be pushed through the stomach wall and that creates a kink where it is angled. I had a stoma for 2 and a half years and that pressure behind it at certain times never went away.

I can't tell if the other pain you are describing corresponds to partial obstruction pain, i.e. food having trouble passing through a narrowed part, which can be caused by either inflammation or adhesions. Either way, 9 months after surgery I don't think it's too soon to have tests to see what is going on. But if you give it another 3-6 months, you will have a stronger case for demanding them: your nurse or doctor cannot use the "it takes a long time to recover from surgery" excuse forever.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Ziggs
Regular Member


Date Joined Sep 2016
Total Posts : 55
   Posted 7/27/2017 8:52 AM (GMT -6)   
I had laprascopic surgery, tinyy little scars, so the recovery time and adhesion risk should be much lower.
I have an appointment with the surgeon in November, it would be a year with the stoma, so if the pain is still there by then I'll complain haha.
Thanks for reassuring me on the pressure feelings.
I'm not sure where the other pain comes from,it sort of starts on the left upper side of my abdomen near my ribs and moves across toward the belly button and there it stays radiating sharp pains.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16719
   Posted 7/27/2017 9:39 AM (GMT -6)   
Keith is right. You can likely do an MRI or MRE to get a good idea of what's going on. You should at least put in a call to see if you can get something scheduled so you can discuss the options when you see your surgeon. November is a long time to wait, and it will be even longer if you need to wait till Nov to see the dr, then wait to get a scan, then wait to get in to see the doctor again before knowing what you're dealing with.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Ziggs
Regular Member


Date Joined Sep 2016
Total Posts : 55
   Posted 7/27/2017 4:30 PM (GMT -6)   
I guess so, I just dont want to make a fuss and hassle them. I'll think about it giving them a call!
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