Facing Removal Terminal ileum in a few weeks..

[RachE]

Hi all, I'm fairly new to both here and to Crohns. Found out I had it April, 2012.
In the last few months I've experienced severe pain, vomiting and been put in hospital 6 times. I just got out today after my last stay. It's always the Terminal ileum that is the worst affected with a complete blockage this time, but it always responds to high dose Prednisone. I'm also now on Humira. (since April)

After starting the Humira and weaning down on the Pred, I kept ending up right back in the hospital at about 10-15 mgs of Pred. Just got out of the hospital again where it showed a total blockage of the Terminal ileum. They were pleased that the Humira seemed to be helping by showing LESS inflammation in the other areas but the Terminal ileum was scarred almost shut. They think the Pred was keeping it open just enough to get by, until Pred wean reached the 10 to 15 mg mark each time. Mine starts with severe bloating, then horrible stomach pain, projectile vomiting and then unable to have any bowel movements. It can happen very fast.



SO.. I spent a very unhappy birthday (Monday) in the hospital and am now facing the removal of the TI in early Sept. I will admit this has knocked my poor brain for a loop. Unsure what to expect.

I guess I just want to be around people who understand. I got this disease later in life than many of you and so admire your strength! I turned 54 on Monday in the hospital.

Anyone who has had the TI removed along with part of the large intestine. ( I may not have all the words correct yet, I'm still learning)..I'd love to hear from you.

Or others. This is a lonely disease for me so far! If this post sounds a bit weird, please forgive me..It's been a long week!

 

[Clash]

So sorry to hear of all you have been through. I have no experience with the surgery but my son's CD is located in the TI, as well. I'm sure others will be along shortly with their experience, I just wanted to send hugs and support!

 

[glum chump]

Hi RachE

I'm so sorry to hear about the multiple blockages and hospital stays you've had. Your diagnosis is also pretty recent, so I imagine this has all thrown you for quite a loop!

I have a permanent ileostomy. This means that my entire large intestine has been removed. In the next couple of years, I'll also have the rectum and anus removed. I understand totally how overwhelming and scary this must all be and a struggle to figure out what this will all mean for you.

My ileostomy was a life saver and has made an astronomical difference to my life. The surgery and recovery were hard for me, but that's not the case for everyone. I would really encourage you to check out the Stoma subforum. You will find it off the main page in the Surgery section. There is a TON of information on that subforum and I think you'll find a very warm, supportive, fun group of folks. The subforum was a lifeline for me, and really helped me not feel so lonely and isolated.

I'm glad you're on the forum, and I wish you much wellness as you prepare for the surgery. And hope to see you on the Stoma subforum!

Cheers,

Kismet

 

[Rosie L]

Hi RachE

Welcome! Sorry to hear you had an awful birthday. I had this surgery 8 weeks ago, like you I was virtually blocked at the Terminal ileum and suffered many blockages in the 2 years prior to surgery, I have been on a low residue diet for over a year. I was diagnosed back in 2000 when I had a right Hemi-colectomy after being admitted for appendicitis.
You will find lots of information on this site that will help you before your surgery. I read many posts etc to get an idea of what to expect as it had been a number of years since my previous surgery.
I found the information invaluable and followed the advice that some people had suggested, for example getting up and walking after surgery etc. very painful but certainly helps to aid your recovery and kick start your system. It certainly helped me in my recovery. If there is anything specific you would like to know I would be happy to give more details on my experience.

You are no longer facing this illness alone as I am sure others will also add their information and support as well.

Best wishes
Rosie

 

[DJW]

Hi. Happy birthday. Blockages can happen very fast. My first surgery was a resection of the TI. I've found doctors are pretty good at managing pain. Good pain management helps speed recovery. Keep us posted and ask questions.

 

[RachE]

Thank you ALL, from the bottom of my heart. This has seriously been one of the most depressed and scared times of my life. It really is hard to understand how FAST it happens and also the pain level is unreal when I have the blockages.

I think I scared myself too when I read on the net all the issues that could come with removal of the TI and it will be done while I'm on Pred. I'm again at 40 mgs..and they will do it at 20 mgs as I wean down. NOT good, but I've seriously not been able to get off the Pred in a year now without being put right back in the hospital.

I guess the question that really is on my mind is what happens to me after the surgery. I read about 'bile salts' and stuff that the TI takes care of. I don't have a gall bladder as it is.

I will look up the 'Stoma' threads since I don't have a clue and my doctors are good..I don't even see her while in the hospital. So, I sort of feel lost.

I am glad most of all to NOT feel SO ALONE anymore. IF you guys can do it..SO CAN I!! Thanks..

Rach