Permanent Stoma

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Chris T
New Member


Date Joined Sep 2017
Total Posts : 3
   Posted 9/10/2017 5:47 AM (GMT -6)   
Hi all.
I have had a terminal ilieum resection in the past, however my biggest issues are fistula' s and perianal abscesses.
I have and have had numerous seton drains. I get at least two abscess every year requiring drainage and removal.
I have many of the other usual crohns symptoms.
I take many meds and have been on infliximab infusions for over four years now.

My question is I am thinking about asking for a permanent stoma. I know it's not a cure but most of my research has shown positive results with a dramatic change in life for the better. What are your thoughts?

I am sick to death with fistula, and perianal abscess and having to take time off work. This has been going on for years and I have had enough.

Kind regards

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 9/10/2017 9:48 PM (GMT -6)   
Chris,

Welcome to the forum.

I am sorry that you are struggling with this disease.

Having a stoma does not guarantee remission from any of the Crohns disease symptoms. I have a severe aggressive form of Crohns with a colostomy. I still have fistula, abscesses, skin issues, eye issues, extreme fatigue, nausea, and arthritis...just to name a few. Others are more fortunate than I am.

I can say that with my colostomy I am not having 5-8 accidents every day...so that part is better. There are days when I (for a very brief period that day) feel almost normal but then the other symptoms kick in or I have to go clean out my fistula for the 5th or 6th time that day and reality kicks in.

Please just keep in mind that everyone is different. Hope for the best but prepare for the worse.

Clo

Chris T
New Member


Date Joined Sep 2017
Total Posts : 3
   Posted 9/11/2017 12:56 AM (GMT -6)   
Hi Clo,
Thanks for the response. This disease is just awful, I have also been diagnosed with Fibromyalgia and joint pain is just horrendous. I also suffer with nausea and fatigue.

I am sorry to read you suffer so much. I am fed up with having to keep going off work sick. I absolutely love my job and my employers are very understanding.

I was just trying to think of options that may reduce how much time off I have.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9923
   Posted 9/11/2017 1:13 PM (GMT -6)   
At this stage it doesn't really sound like you have anything left to lose. If you're still undecided, you could always talk with a surgeon about the pros and cons of a temporary stoma instead of a permanent one - sometimes fistulas will heal of their own accord once stool is diverted away from the affected area. Trouble is, you've guessed it, the Crohn's tends to come roaring back upon reconnection.

I think if I was in your shoes I'd go for a permanent stoma. I had a stoma for two years and I was definitely better - in fact it was the first time I'd been in remission since diagnosis. Got reconnected, and the disease came straight back. I don't have fistulas or abscesses to deal with, which is fairly unusual for Crohn's colitis, but it's been severe in every other aspect. Think if I started getting abscesses as well, I'd be booking surgery to get everything removed, butt sewn up, and a permanent stoma created.

@Clo - You still have your rectum though, don't you? If you removed it wouldn't that stop the fistulas and abscesses? I'm genuinely not sure.
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)

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 9/11/2017 1:51 PM (GMT -6)   
Chris,

I am not trying to give you only the negatives....there are many positives. I just want you to keep it in back of your mind....just in case.

I am very glad that I have a colostomy and would recommend it to individuals that have discussed it with their physician....and they have come to the conclusion that it will help them.

NCOT,

According to the specialist I see....the Remicade is making a difference but I still have active Crohns through out. He also stated that sometimes the Remicade will help with the bowel but occasionally it will not stop the extra complications. A stoma does not guarantee remission...although for some it improves their quality of life. AND the original CRS plus two new second opinions have all told me to leave my fistula and rectum alone. ((But every time I read Christine's posts I shudder and say a prayer. I do not want that to happen to me....)

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1529
   Posted 9/11/2017 3:58 PM (GMT -6)   
I definitely would say it is worth a consult with a surgeon to discuss the options for your situation. Everyone as you can see is different.

If you are interested in a permanent stoma I would definitely ask about an ileostomy vs colostomy for your situation. Some cases one is recommended over the other. However in my situation I noticed a bigger improvement when my entire colon was removed. When I had my resection and part of my colon remained I still had some issues like nausea, skin sores, exhaustion. Although I still felt greatly improved with the temp ostomy, once my entire colon was removed those extraintestinal symptoms went away.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9923
   Posted 9/11/2017 5:50 PM (GMT -6)   
Cupcakespinkgal's post makes me want to take out whatever's left of my colon.

PS: Clo - Christine's situation only came about because the dumbass first surgeon left her anus in instead of removing it and sewing her butt up. And ever since then, they've made excuses about not removing her anus (like she was too old, or something, at the age of 67 - rubbish). With Crohn's colitis I reckon it's important to just get the whole lot removed. If I have a third surgery to go back to a stoma, I will only agree to it if they agree to remove everything and sew up my butt.

Post Edited (NiceCupOfTea) : 9/11/2017 5:54:40 PM (GMT-6)


DCCrohns
New Member


Date Joined Jul 2011
Total Posts : 14
   Posted 9/11/2017 6:11 PM (GMT -6)   
I feel you, as a fellow Chronie with multiple fistulas and with a temporary ileo (in place before gracilis repair surgery).

In the past two months, I have seen several new doctors for second and third opinions (both medical and surgical). Some place my odds of getting reconnected much lower than I ever expected and suggest I just jump to the proctectomy/colostomy.

While I realize that may be the end (no pun intended) result, I still want to know that I tried other medical (and possibly surgical) options since I am relatively young and stubborn. In fact, today my doctor and I regrouped and have decided I am going to try a new biologic and add an immunosuppressant to the game (after fun imaging/exploration to assess paths and inflammation).

Ultimately, it's your body (even if it often doesn't feel like it) and you need to do what feels right for you. I definitely recommend consulting with at least one other doctor if you can, and then making your own decision as to next steps. It's a big physical and mental decision to make that change and I strongly believe you have to be ready on both fronts!

Best of luck!
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, VSL#3
Current Meds: Humira (80mg/week)

Surgeries: Fistulotomies & Seton Placements/Adjustments (September 2011, January 2013 & August 2013); Advancement Flap (December 2013); Temporary Loop Ileostomy (July 2016); Fistula Repair with Gracilis Muscle (September 2016); Fistula Repair (December 2016)

Post Edited (DCCrohns) : 9/11/2017 7:24:55 PM (GMT-6)


Chris T
New Member


Date Joined Sep 2017
Total Posts : 3
   Posted 9/12/2017 12:52 AM (GMT -6)   
Hi thanks for your honest answers, I have no issues with hearing negative comments as they help form decisions.

I have just been offered laser surgery on the fistulas, so I think I would be mad not to try this first.
I have had many things done to the fistulas over the years and they always come back. But I might aswell try the laser surgery first.

I have had this disease for a long time, so it's not a decision I have made quickly. I have had so many abscesses removed that my muscle does not work properly, so I have to wear incontinence products most of the time. Which is just horrendous especially at work.

I think many of you are right, I will discuss this with more than one dr/surgeon and I will go with the laser surgery first.

Thank you everyone. Great forum.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9923
   Posted 9/12/2017 7:11 AM (GMT -6)   
Good luck with the laser surgery. I hope it helps.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 9/12/2017 5:56 PM (GMT -6)   
Ohhhh....I asked about laser surgery for my structure...they don't do it yet.

Can you share any info on it? I need to ask about that next time.

Listen to your gut instinct (no pun intended). You will know what and when..... Good luck!! I hope you feel better soon!!!

Please keep us updated...

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 268
   Posted 9/12/2017 7:06 PM (GMT -6)   
Throwing a quick thought out there...

I was once offered hyperbaric chamber therapy. Have you given any consideration to that?
Sarah, 27 y/o
June 2017 Flap procedure for abscess
2014 Total proctocolectomy w/ perm ileo
2010 Temp ileostomy
Thyroid Cancer, Crohn's Disease, Autonomic Dysfunction, Heart Shunt, Chronic Kidney Stones

Current rx: Celexa, Remicade, Synthroid, Multivitamin, Calcium w/ D, Dilaudid, Birth Control, Zofran, Lansoprazole, Metoprolol, Benadryl, B12 Shots, Probiotic, Allergy Med, Xanax, Ambien, Loperami
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