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Pre surgery Support Group

I am looking for... I'm not sure, I have not had it easy! I was diagnosed with crohns and tolerated it well ( not kept great but if anyone asked... I was fine) I then fell pregnant (so happy) against what they said I carried my beautiful daughter till 36 weeks where they induced me as my crohns was so bad!
I was meant to reduce steroids as per protocol as thought once my daughter was out things would be better. Things got worse when she was 9 weeks and I was admitted to hosp. My husband, daughter and I spent 9 week as a inpatient, where i refused surgery but then I was started on infliximab which they made me stop breastfeeding for (broke my heart) and eventually I was discharged, sadly the infliximab failed and I flared up again, I was commenced humira which worked wonders for a year and now I am just out of hosp following Anothee flare, i am now on double dose humira which seems to be working ok not great but tolerable, my consultant has asked me to see a surgeon and stoma nurse ( for information) as he feels I have scraped surgery so many times and I have refused so many times, he thinks it's going to happen soon, it scares the living day lights out of me!!!!
 

nogutsnoglory

Moderator
Welcome to the forum. I'm a little confused by your post. Did you want to just start a regular post or an actual support group for those getting ready for surgery? If that's the case we can move your post to the surgery section and your support group will be all set. If you didn't intend to create a support group we can just convert it to a regular post.
 
I don't really know either..... I suppose I was just
Looking for pre surgery support, I really don't want surgery but it appears to be what's going to happen?
Can you also tell me hue I comment on other posts as I'm not sure how to do it??
Sorry ..... Very new to this!!
 

DustyKat

Super Moderator
Hi Gayle,

I am so sorry to hear of all you have been through. :ghug:

I don't have Crohn's but both of my children do and both have had surgery. Although I wish they never had to face such an outcome and it scared the hell out of me that they did but I cannot fault the outcome up until now.

For them Crohn's hit hard and fast. They did not get the opportunity to go down the medication path to any great degree, my daughter not at all, due to complications. I don't and can't see surgery as a terrible outcome as it not only saved their lives but more than gave it back to them. My daughter had surgery seven years ago and has remained in remission since then. My son had surgery nearly two and a half years ago and he has also remained in remission all that time.

This is just our story but I just want you to know that surgery doesn't have to be that scary out of options end of the line outcome, it can and often is just the beginning of a much better life. :)

Good luck!

Dusty. xxx
 
Oh thanks for your response, my consultant has just phoned me to ask me to see the surgeon on Wednesday, purely for information, slightly concerned as he said it would be a couple of months before I saw them??
Are your children on any medication post surgery, it sounds strange being so scared as I am a nurse and look after quite a few children with crohns either with stomas or with out. Can I ask if both your Children wear bags, iv been reading about stoma irrigation but not sure if that's a possibility?
Thank you again for getting I touch!!
 

DustyKat

Super Moderator
Hmmm, not sure about the quick appointment, particularly with you being in the UK where the waits seem to be a tad on the longer side. Is you GI 'mates' the surgeon. Maybe the surgeon slotted you in earlier as a favour???

If you look at my signature just above your post there is a full list of meds/supplements but the prescribed meds for maintenance are Imuran (Azathioprine) for both of them and my son has just had Pentasa added.

I don't think it matters how much you know or have seen, when it comes down to it being you or a loved one that has to go through it you feel no differently to all those patients you look after. :ghug:

My daughter was undiagnosed when she had emergency, she had a resection but no stoma. My son's surgery was planned. If they had to go in earlier than expected he may have ended up with a stoma but as it was they were able to stabilise him long enough for the inflammation to go from acute to chronic and he didn't end up with a temporary stoma either.

Where is your Crohn's located?

Dusty. xxx
 
Hi! My stoma surgery is 31th July, two weeks from now! Yikes!

My rectum and sigmoidcolon is inflamed and i have a HUGE fissure in my bum and possible fistula. I have been on Humira for 6 years and it worked wonders at first, then was in remission two years and GI and i decided to stop Humira. FAIL! Six months after my crohns just exploded, started Humira again, not working, have been usin doubledose but even that doesn't help anymore. I have been in agony for two years now.

Now they want to do temp stoma for me, not sure yet is it going to be colostomy or ileostomy, if my colon is "healthy" enough surgeon try to do colostomy, if not, then ileostomy.

I am nervous, but somehow i really wait the surgery. I just can't deal with these anal leaks, pains, constibation, diarrhea and stuff any longer.

am overweight crohnie, so little nervous about stoma and my bigger belly, coz almost all the videos on youtube what i have been waching has been people with no fat at all :D Have to ask my surgeon is there something different with stoma and bigger belly, than stoma and no belly at all.
 
Hi there!

I ended up having emergency surgery in February. I ended up with a temporary stoma. This is also when I was diagnosed with Crohns. I also had fisures...they're healing well.

When I learned about my stoma after surgery, I thought it was the end if the world...I can't tell you how much better I feel since getting her (ginger is my stoma).

I'm currently on Pentasa and Flagyl.

Although surgery is scary, as said in another reply, it really can be a start to something new and better! Good luck to you!
 
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