When to get rid of the damn ileum

[Jajabinks]

Hello everyone,

I got back home on Monday after a week stay in the hospital thanks to my ileum acting up again. The doctors don't want to take it out but this was my third time in the hospital this year due to it. I don't know what I can and cannot eat anymore. The flare was so bad I had to crawl to the bathroom and I laid there til my dad came and rushed me to the hospital. My hips and spine gave out on me and I could not walk. The reality of this disease hit me hard this year and I am dealing with a lot of emotions. Hospitals are not where I want to spend most of my life.

The doctor at the ER wants to place me on Humira but shouldn't her check to see if my ileum problem is scar tissue or inflammation first before starting me on it? TIA

 

[theOcean]

Oh gosh, I'm so sorry to hear you've been through such a rough time. I was hospitalized three times within one month last year, but I finally got better and now I'm in remission. So there might still be options for you, too! Also, even in the case that you do get your ileum removed and get a jpouch: people can still get pouchitis, so it may not resolve all your problems.

Humira should be great for treating your inflammation, but you're right that it should be checked if it's inflammation or scar tissue causing you pain. It wouldn't hurt to start either way, though.

 

[DustyKat]

I am so sorry to hear of all you are going through. :ghug:

Yes, firstly you need to know what you are dealing with. If it is scar tissue then no amount of medication will make a difference.

If it is both scar and acute inflammation or inflammation alone then you need to get onto something to get rid of it ASAP. I don’t understand that if this is your third admission this year why they have only had you on 20mg of Pred and why they are persisting with you on Pentasa. Pentasa does work for some people with mild Crohn’s but outside of that it is a pretty useless drug and certainly not one that fits the symptoms you are having. :heart:

Dusty. xxx

 

[Terry]

Hi, after any one of those 3 hospital stays have they ordered any CT scans, MRI's, Colonoscopies, any tests at all to see what inflammation and scar tissue you have after all these particularly nasty flare ups? I agree you should be on a higher dose of prednisone to help bring your symptoms under control. After having Crohns in the Ileum area for the last 26 years, I had my 1st surgery 5 weeks ago, they removed 20cms of my small bowel and the valve which were all badly damaged with scar tissue from the many flare ups that I have had over the years. As yet I am still unsure if this is going to work and put me into remission, things have certainly settled down a lot to what I used to deal with but I think I just have be patient and see what happens once everything is healed. Once you know what you are dealing with they can determine what medications are best to treat you with. Just push them to do these test is what I would be doing. I wish you the best of luck and hope that things improve for you soon. Love Theresa.:ghug:

 

[Jajabinks]

Thanks for writing me everyone. I am on 30mg of Pred right now (tapered down from 50mg) and I am working with my insurance to get Humira approved for July. I am really nervous about Humira but I am really hoping it helps me. My MRI showed "luminal narrowing and inflammation". Based on these results, would you say it is safe for me to go on Humira? Sounds like a stricture to me. My doctor said he does not think it'll be a problem but I have my doubts. I noticed my ileum became problematic when I took Naproxen and ate nuts so I am staying away. I also stopped taking Pentasa, completely useless to me at this point. I would have started Humira sooner but I had an indeterminate TB blood test which I am being treated for now for one month.

Terry I had all type of tests done at the hospital lol! CT scans, ultrasound and MRI (transported out of the hospital for this one!).

Do you guys manage to stay out of the hospitals? If so how?

Thank you for your well wishes everyone.

 

[theOcean]

Naproxen is something we really can't tolerate... it triggered a flare for me. Humira should be fine for you, though!

Honestly just proper treatment is the best way to stay out of hospitals. Since going on Humira and Imuran/6mp I've been in complete remission with no symptoms, despite having severe fistulizing Crohn's and being told I needed to get my colon out. (I didn't.)

 

[Jajabinks]

According to my MRI results, I have "luminal narrowing" and inflammation. My doctor said he cannot tell if it is scar tissue or not. Makes me a little nervous. What do you think of this? TheOcean, I am glad to know you are in remission! Hope I can say that some day too. If my terminal ileum is removed are you saying I would need a bag? :eek2:

 

[firefly609]

I'm no doctor but I don't think you need a bag for that. My dr wants to cut out my illium, so I can start fresh, no mention of a bag. Then just some maintenance drugs after op.

 

[DustyKat]

Normally an Ileocaecal resection, terminal ileum removal, does not mean a bag but if it does in the vast majority of cases it is temporary.

Going into a planned surgery, whilst under treatment and with the surgeon having a pretty good idea of what he will find the chances of needing a bag are pretty slim indeed. It is always a possibility though due to the fact that the surgeon won’t really know what faces him until he sees for himself. But again in your case I would imagine it would be highly unlikely.

Both of my children have had the same surgery you may face, one emergency one planned, and neither of them needed a stoma.

Dusty. xxx