Advice on surgery pleeeaaseee

[Debbielouisa]

Hiiii. Bit of advice please..I've had crohns for about 16 years. Currently on humira which is actually working great and I think in remission at the moment. Along woth the help of good food and exercise.. but due to all bad I've had in the past they have said my stricture is causing all my problems ..so had an mri . Due another colonoscopy in a week and waiting for a meeting with my specialist again and surgeon. .but my query is when she told me she obviously mentioned having a colostomy bag but also asked if I had finished having a family which threw me a little. She mentioned it Wil effect the way the operate ... can anyone help as to what this means ?? I have crohns in my terminal illieum basically tight at the end where the valve is. Its about 30cm long but my stricture itself is only about 5-10 cm long.. Please any help would be great

Xxxx

 

[woops!]

Hummm... could it be that she wouldn't want any pressure on the area where the bag would be? Just thinking about a growing baby and the placement of the bag.
I bet one of the others on the forum who has a bag would prob know for sure.

 

[Debbielouisa]

Having the bag wasn't a definite though so I wasn't sure. It threw me and shocked me a bit because I wasn't expecting her to ask me that.. so I never got the chance to question her ? I've got 3 beautiful children and don't plan to have any more.. but it scared me because I thought will it mean I won't ever be able to have children again and the choice be taken away from me at 32 ... Jyst confused !!!

 

[valleysangel92]

Hello

Sometimes when they perform surgery on women with Crohns there is a risk of affecting fertility as they are operating very close to the reproductive organs. They will always take care not to damage these organs, but some surgical techniques carry more risk of causing damage than others, as they involve operating closer to the ovaries etc or moving them around more during surgery. If you tell them that you may want another child in the future, they will likely attempt to use techniques less likely to affect fertility.

If it helps I know lots of women who have had surgery for Crohns, including women with stomas who have gone on to have healthy pregnancies and very happy and healthy babies.

Talk to your doctor about your concerns, be honest, tell them how you feel, ask them how likely they think it is that the op will affect future fertility and what the complications could be if you decide not to go ahead with surgery at this stage. This will allow you to weigh up your options and make a properly informed choice.

 

[eleanor_rigby]

I wouldn't have thought you would need a stoma bag. This sounds like a straight forward resection, will they be doing it laparoscopic? I had a resection due to a perforated bowel and abscess at the ileocecal valve and did not need a bag. They also had to move my ovary back into its place as the abscess had caused it to move out of place and no one said anything to me about fertility.

 

[valleysangel92]

I wouldn't have thought you would need a stoma bag. This sounds like a straight forward resection, will they be doing it laparoscopic? I had a resection due to a perforated bowel and abscess at the ileocecal valve and did not need a bag. They also had to move my ovary back into its place as the abscess had caused it to move out of place and no one said anything to me about fertility.

When I had my resection they warned me that if the disease was more advanced than they thought or if the reconnect failed it was likely I would need a Stoma. They always have to tell patients this is a possibility so that they are aware of the risk and avoid it being a traumatic shock if it is needed, even if its only a tiny possibility. It sounds like in this case its just a "this is a possibility if things don't go how we planned" thing. Fertility wasn't mentioned to me either but I think my surgeon just assumed I would want children in the future as I was only 20. I think in an emergency situation they'd only talk about the big risks as there isnt time to go through all the details and there isnt the option of waiting for later.

 

[Debbielouisa]

Thanks for your replies.. valleysangel that helped make more sense!!
Eleanor like I say I'm confused hence me writing on here. It wasn't a guaranteed yes I will have a bag or guarantee I won't have children.. she just said in her words "we will need to discuss the possibility you may need to have a bag & also how do I put this .... have u finished making a family as this will effect the way in which they will need to operate " I didn't get chance to ask questions I was on my own so being told all this didn't sink in immediately. . I'm booked in for another colonoscopy in 2 days then back to the specialist on the 17th so will hopefully know more and can ask more questions then. I don't like not understanding it all I prefer for it to be clear .. aftet that meeting they said go home and enjoy christmas ans we can proceed in January with it all. I've just sat n stressed since !!

 

[eleanor_rigby]

Yes all I said was "I wouldn't have thought you would have needed a bag" or that this would affect your fertility. I understand all possible risks have to be outlined to the patient. My post was just to highlight that in this case, in my opinion, given my anecdotal experience, the risks you were concerned about or confused about seem to be very low risk. Even in my case, before I was operated on, my surgeon knew he would be doing open surgery to fix a perforation and abscess and still told me 90% I won't wake up to a bag and that no one was talking about that when I asked him about it.

With all surgery though there is no absolute guarantee of anything, I just wanted to offer some reassurance.

 

[ErnieElse]

Hi Debbie. I wish you well with your upcoming treatments. Not worth much I know but I just want to offer my best wishes. Ernie

 

[Debbielouisa]

Thanks Ernie !! Very much appreciated and very lovely of you !