Ileorectal Anastomosis in Patients with Crohn's Disease?

Hello there :-)

Have any Crohn's-affected forum members had an IRA? I had my colon removed following emergency life-saving surgery two years ago, due largely to complications of diverticulitis. However, I also had around 30 cm of my small intestine removed due to having moderate/severe Crohn's in that area (ileitis). I appear to be 'Crohn's-free' at the moment, though no further in-depth investigation has been done.

My surgeon - who saved my life by removing my colon - can, in theory, perform an IRA. However, he has described it in a letter to my physician as a "very high-risk surgery." Additional risks I know of are that there could be an increased chance of Crohn's returning at the 'join'.

I am due to have an appointment later this week with this surgeon, who can possibly do the IRA surgery. I also have an appointment the day before with my Crohn's specialist. I last saw them both around a year ago, when I said I would think further about whether I wanted to go ahead with the various investigations that would lead to possible reversal surgery. (I have already had the rectal stump investigation - and that appears to be fine for surgery.)

I have adapted quite well to having the stoma and bag. I do get a bit anxious when out having meals with other people. I feel fuller/bloated much quicker, and also sometimes have trouble swallowing food - as I am trying to chew well, while chatting and trying to appear 'normal'! I do not have any of these problems when I am eating alone at home, so I think they may be more anxiety-related than a big cause for concern.

Just wondering if anyone can offer any helpful advice or insights on the above.

Thank you.

Feeling anxious in public is natural. It takes time to adjust to "our new normal" after surgery. We're all different. I adjusted to living with a stoma pretty quickly. Other folks have a longer struggle.

At one year post-op, my stoma sticks out quite a bit, can't hide it. I used to look down at it all the time. Fuss with rearranging my bag, getting rid of even a little gas. But, I've become used to it. And with each passing day, I stress about it less and less. Most people who do notice it know it's an ostomy.

I used to chew...chew...chew. Experimenting, I found most food I can just eat normally. I only thoroughly chew salads, nuts, and popcorn (small amounts only).

Earlier this year I refused reversal surgery. Too much of a gamble for me, even though I'm considered low risk.

You really need to find out all the facts why your surgeon considers you "very high risk." If possible, seek out another surgeon for their opinion.

Is there an ostomy support group in your area? Talking with fellow ostomymates would be helpful.

Reversal is a big decision. Take your time considering it.

Hello Beachboy

Thanks for your insight - it's very helpful to hear your experience. Like you, I can pretty much eat anything. Got a baked potato in the oven right now - although I do always remember to cut pieces small. I have adapted quite well to the stoma and bag - but, of course, I would love not to have it. And, at the moment, I am conscious of having problems with intimacy, but hopefully, I will get to a place where I can feel better about that.

I do understand what you say about it feeling too much of a gamble to go for a reversal - especially when we have adapted quite well to our 'new normal' and the stomas have saved our lives. I will be asking my surgeon what he means by "very high risk." I only saw that because I asked my GP for the letter he sent. He never used this term with me in the consulting room.

Unfortunately, there are no support groups where I am.

Thanks once again for your insight.

Ileorectal anastomosis is a straightforward procedure. The problem arises with Crohn's. Yes, there is a risk of an exacerbation of Crohn's. Is both the rectum and small bowel free of microscopic Crohn's inflammation on biopsy allowing for finding disuse proctitis? IRA will cause frequent, commonly semi-liquid stools that are going to need to be managed and initially be rather annoying immediately postoperatively. The decision to reconnect is between you and your surgeon.

I have an IRA, but they are thinking now that rheumatoid arthritis caused the autoimmune response that, over years, killed the nerves in my colon (for whatever reason, mine decided to attack an organ hardcore first over just the lining of my joints). My surgery was done in two separate procedures with months of healing in between. The IRA connection was formed at the time of the abdominal colectomy. I see you're in Scotland. I was hoping you were in the States and could get a second opinion at Cleveland Clinic, where I had my surgeries. For these types of surgeries, they outrank most hospitals. Are they concerned with you possibly losing more small intestine if the Crohn's spreads? I'm guessing the high-risk factors for you are the Crohn's spreading and then losing more small intestine.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hello Selkilassierose,

Bonnie waves to North of the Border :-)

 

I connect with your post and particularly those replies who highlight the relevance of a Crohn's diagnosis.

However, I do not know why, specifically, the ileorectal anastomosis has been put forward as a possible solution for you personally.

 

My observations would highlight the desirability of you knowing the true statistics and the actual definitions of possible complications - and my flag-up comes from a very positive person.

 

One may wonder why the term 'high risk' was used in the surgeon's letter to your GP [and why you were not copied into that letter].

 

Informed consent is very important, for then you are able to do all the research you need to in order to arrive at a carefully considered conclusion.

 

I cannot overemphasize the relevance of insisting upon a full disclosure - and a detailed disclosure to you as to what possibilities may arise - and for you to be informed in a clear, but detailed manner.

 

We can only ask the questions which occur to us.

And sometimes we are faced with selective data and not necessarily all possibilities that are already documented.

 

Please retain positive forward focus - for a good intention is very helpful - but take your time to research both before and after you have had your consultations - so that a reflection and careful sifting of the data allows you to be fully informed.

 

Crohn's disease is a genetic autoimmune condition which is still not fully understood - however, even if Crohn's is not actively affecting one, the immunity response of someone who has a Crohn's diagnosis cannot be minimized .... and that includes when we have no evidence of active Crohn's disease [either over a 'short' period of months or a very long period of many years].

 

Do not underestimate the existence of a Crohn's disease diagnosis:

A brief background which causes me to mention caution is that I had my panproctocolectomy when I was 25 years old - after a Crohn's disease diagnosis at 16 years: Although my colectomy involved the removal of part of the small bowel, all the large intestine and anus [i.e., everything past the point of incision of the small bowel] - there were many complications following that surgery which manifested physically elsewhere on my body - yet within the remaining digestive tract [from mouth to all of the remaining small intestine] there were no active symptoms of Crohn's after the colectomy.

Although Crohn's disease may be defined as quiescent [showing no signs of active symptoms - a state of being at rest] as I understand it - the fact is our differing genealogy does carry a very different [significant] propensity as regards how our individual autoimmunity system works and the manner that cellular responses work vary - and so each of our individual pathology is unique. 

My Crohn's disease had been quiescent for many, many years - yet when I was accepted onto a clinical trial to receive the TIES device implantation - [self-elected surgery] in order to cease using a collection pouch - the resultant happenings were severely detrimental to say the least.  Four and a half years on from TIES explant I am still in the process of reparative surgery and that has had the benefit of best-focused intention, and private surgery to try and address the unforeseen [by me] outcome!

Subsequent colorectal clinicians and consultant surgeons have expressed that owing to my Crohn's disease diagnosis that they personally would never have put me forward for the trial of the implant!  I trusted the NHS lead investigator of the clinical trial who did put me forward!

I do not wish to alarm you - as the TIES device is a very, very 'new' journey in the field of potential continent solutions ... but my situation does illustrate the relevance of a Crohn's diagnosis and its implications.

... AND one positive element for the greater good of all Crohn's disease patients - going forward,  the sponsor company of the clinical trial - within its FAQs say: "Patients in the clinical trial cannot have a Crohn's disease diagnosis".

The ileorectal anastomosis / J Pouch is far more well documented - and dependent on where you may elect to have the procedure - and by whom - the statistics will speak for themselves - but please make sure the statistics which are furnished for your contemplation refer to exclusively Crohn's patients and are not overall statistics for bowel surgery.

Ask many, many questions and try to research those questions prior to your consultation so that when the data is discussed you are able to ask pertinent in-depth questions upon that data; thereby you have a balanced informed presentation - remember 'high risk' has been communicated to your GP - which may be likely to be in connection with the Crohn's diagnosis.

The TIES concept is a great concept and time will tell whether that particular route to a continent solution proves to be acceptable for some requiring bowel surgery over time: I wish its development the best possible going forward.

 

I am a great believer in positive intention - and personally will only ever, very reluctantly, settle for second best - so do your homework and know we are rooting for you to come to a decision which is right for you: An ileorectal anastomosis may, or may not be the most appropriate solution for you?

 

Good luck

And best wishes

Jayne

PS I guess you may have come across this information, but if not, you may find this article and its citations helpful:

https://pubmed.ncbi.nlm.nih.gov/1425051/

If in doubt, a second opinion is always possible.

Best wishes,

Jayne

"Are they concerned with you possibly losing more small intestine if the Crohn's spreads? I'm guessing the high-risk factors for you are the Crohn's spreading and then losing more small intestine." . . .

Hi there - thank you for your response. It appears that this may be the main reason why they would prefer I did not go forward with it, even if it is technically possible. I hope to get further clarification when I speak to my gastroenterologist (Crohn's consultant) on Thursday. From my understanding, so far, the 'join' would be the place where the remainder of my small intestine would be most susceptible, but - of course - Crohn's can happen anywhere along the digestive system. And my gastroenterologist is concerned that the integrity of my small intestine is preserved as much as possible.

When my consultant - who would carry out the procedure - told me the pitfalls etc., he referred to the general ones - leakage etc. He never used the term 'very high risk'. It was only after he spoke to my gastroenterologist that it appeared in a letter. So, she seems to have convinced him of something.

Hopefully, it will all become clearer for me Thursday and Friday!

Thanks for your insight.

"Is both the rectum and small bowel free of microscopic Crohn's inflammation on biopsy allowing for finding disuse proctitis?"

Thanks for replying. Other than being told that the rectum is a suitable length, I have not been tested for this. If I decide to move forward with the surgery, one of the first things they would do is explore how my digestive system is looking in terms of Crohn's using a camera, etc., and, I am guessing, doing a calprotectin test.

Wave back at you, Jayne, from north of the border!

"Please retain positive forward focus - for a good intention is very helpful - but take your time to research both before and after you have had your consultations - so that a reflection and careful sifting of the data allows you to be fully informed."

Thank you very much for detailing your experience - and I very much align with the above comment in terms of positive forward focus. That is the best way for me to get clarity and come to the best decision. 

I had never heard of the TIES procedure, and I am sorry to hear that it has not worked for you, and that you were not properly advised that patients with Crohn's should not have the procedure. 

I'll now have a read at the article you link to at the bottom of your comment. 

Thank you again for your insight. 

Sadly, I'd like to comment in regards to the quote about being "Crohn's free" after surgery for it. Anyone telling you this will spark a presidential debate.

It's not my intention to debate it here, just to pass the dialogue my own surgeon told me after complete removal of the large intestine and rectum recently. It was my hope to be "cured of Crohn's"..👍

He smiled. 👎

I trust his knowledge.

"When you have your lower plumbing, whether it be the large intestine, small intestine, or rectum removed because you had inflammation from Crohn's or ulcerative colitis, removing these parts... it doesn't necessarily mean you're free of it. You'll never ever be free of the inflammatory process."

Gulp.

I come to accept this logic since my own root (rectum) being "the source" is out of me now.

My rheumatoid arthritis pain has been tenfold as of late. The pain that I'm having right now kind of makes me wonder if I did the right thing? 😵. It was my hope removing the root would at least ease other issues. It hasn't.😞😞

Also, my eyes have been affected.😲😲

Went for an eye exam today.. 😦

This thread has been very informative. Great insight & advice.

I didn't know anything about I.R.A.

Until now. Thank you for sharing this difficult phase in your life.

Let's pass the peace pipe.😉 and do a healing dance.🕺🕺

- Warrior