Newbie but an old Crohnie!

[PattyLynn]

I have just joined this forum although I have been reading it for some months now. I was diagnosed with Crohn's in 1992 and had my first surgery the same year. After trying all the "hot, new medications" at the time (we are talking 20 years ago!) and finding out that nothing worked, I had 2 feet of my colon removed. I was pretty good until late 1999 when, perhaps due to my own stupidity, I ended up in such bad shape that in June 2000 I was rushed in for emergency ileostomy surgery. The doctor gave me a loop ileostomy in the hopes that we would one day be able to reverse it. That has never happened and in 2002 the surgeon performed and end ileostomy and in 2004 I had my colon and rectum completely removed. Between 2000 and 2007 I had 11 surgeries. Since 2009 I have been in pretty bad shape (again) but I am desperately trying to avoid surgery number 13 (call me superstitious!). I have been on Remicade since November 2011 and my GI has just recently doubled the dose. Just like in the past, I am not having much luck with medications helping. Things have gotten to a point now where I just feel like I can't do this alone anymore. It's nice to be able to read stories from so many other people - it is comforting to know that there are others out there who can share my pain & frustration and hopefully offer support and "a shoulder to cry on". Thank you.

 

[CheerBear12]

I'm so sorry you had to have 12 operations were all these due to Crohns disease? I hope everything goes in the right direction for you. I hope the medication starts working for you soon. Sending big hugs to you I know how you are feeling when it wasn't working for me. I hope your family are giving you all the help and support you need right now. Keep me informed on your progress.

 

[David]

Hi Patty and welcome!

Wow, you poor thing, you've been through so much

*hugs*

I wish I had some advice, unfortunately I do not. The only thing I can think of is I wonder if you might be eligible for a stem cell therapy trial?

We're here for you!

 

[CheerBear12]

Hi I've been diagnosed with indeterminate colitis which means they don't know whether it's Crohns or ulcerative colitis. I'd been suffering with this for 4 months before I actually done anything about it. I went to my doctor to get Imodium to see if that would work. It didn't two weeks later I got admitted was in absolute agony with my stomach and was crippled with pain. I was on prednisone and had 1 session of infliximab the treatment never worked. I had to have an emergency ileostomy operation my large bowel could of burst at anytime and killed me. I spent nearly 6 wks in hospital in total. My question is how do they remove the rectum through the stomach or bottom or both? How painful is it for sitting etc? I have to go bk to hospital in november to make my decision then get put on waiting list. With being diagnosed with indeterminate colitis I feel that I have no other choice to make the ileostomy permanent. The main reason for the internal pouch failing is undiagnosed Crohns disease. Many thanks

 

[PattyLynn]

Wow, CheerBear, our stories are so similar. I too waited too long and ended up having my emergency ileostomy because my colon was on the verge of rupturing - which probably would have led to my demise. To be honest, I actually had to think about it and I weighed the pros and cons of living with an ostomy and dying - seriously. Obviously having the surgery was the right thing to do. All 12 of my surgeries have been due to either active Crohn's or complications that resulted from previous surgeries. The decision to have my colon/rectum removed was really a no-brainer. Because my colon was no longer "hooked up" and my rectum was so badly scarred, there was absolutely no way for the doctors to check on the health of the organ so detecting cancer would have been impossible. I knew at that time that I would never get a reversal so I told them to just take it out! They removed my colon through the abdomen and the rectum through the rear. There was no real pain afterwards, sitting was fine and the stitches were internal so didn't need to be removed. Before you make the decision, make sure you know FOR SURE that your ileostomy is going to be permanent, once they remove the colon, there is no going back!

 

[CheerBear12]

Pattylynn thanks alot the surgeons didn't tell me that the ostomy surgery was too save my life at the time it was the best option I was in such a state as it was without being told that. I didnt want it but i didnt know then that it could of killed me and i'm so glad that i had it done and that i'm still here! They only told my parents I found out the day afterwards which is nearly 8 months ago. The surgeons said they can do the rectum removal keyhole so does that mean they will be going through my stomach again? They left mine in because I was hoping to get it reversed but with my diagnosis I feel I have no choice but to get it removed. How long was recovery afterwards? I'm Hoping it won't be as painful as the ostomy... Thanks a lot hope you get sorted very soon!!

 

[CheerBear12]

Pattylynn have you ever had the feeling of wanting to go the toilet as normal even after their removed your rectum? Thanks x

 

[PattyLynn]

Hi CheerBear,
I don't remember feeling that way after they removed the rectum. I do remember feeling that way after getting the ileostomy. The feeling lasted for about 4 months (on and off). I had the ileostomy for four years before they removed the rectum so it had been a long time since I had gone to the bathroom the 'normal' way. The rectum removal really had no impact at all on my life. No feelings of discomfort or pain. The only change now is that when people accuse me of being anal retentive, they really have no clue just how right they are!! :ybiggrin:

 

[CheerBear12]

Hi Pattylynn that's weird coz some people have said they still get Phantum feelings even afterwards. I know people are different tho. How long was the recovery afterwards? How do you look after the wound? Is the wound left open or is it stitched and stapled? thanks

 

[CheerBear12]

Has anyone struggled getting pregnant after having their rectums removed?