Ileorectal Anastomosis in Patient with Crohns Disease?

Hello there :-)

Have any Crohns-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 30cm of my small intestine removed due to having moderate/severe crohns in that area (ileitis). I appear to be 'crohns-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 is that there could be an increased chance of crohns 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 quick.  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 thoughly 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 a 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 arise with Crohn's.  Yes, there is 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 2 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 type of surgeries they outrank most hospitals. Are they concerned with you possibly losing more small intestine if the Crohns spreads? I’m guessing the high risk factors for you are the Crohns spreading and then losing more small intestine. 

Hello Selkilassierose,

Bonnie waves to North of the Border :-)

 

I connect with your post and particulalry those replies who highlight the relevance of a Crohns 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 conscent is very impotant, for then you are able to do ALL the research you need to in order to arrive at a carefully considered conclusion.

 

I can not over emphasise the relevance of insisting upon a FULL DISCLOSURE - and a detailed disclosure to you as 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 documentated.

 

Please retain positiove forward focus - for a Good Intention is very helpful - but take your time to research BOTH BEFORE AND AFTER you have had your consuultations - so that a reflection and carefull sifting of the data allows you to be fuly informed.

 

Crohns Disease is a genetic auto immune condition which, is still not fully understood - however, even IF Crohns is not actively affecting one, the immunity response of someone who has a Crohns diagnosis can not be minimalised .... and  that includes when we have no evidence of active Crohns Disease [either over a 'short' period of months or a very long period of many years].

 

Do not underestimate the existance of a Chrones 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 Chrones Disease diagnosis at 16 years: Although my colectomy involved the removal of part of the small bowel, all the large inststine and anus [ie 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 Crohns after the Colectomy.

Although Chrones Diseaase 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 differeing geneology 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 Chrones Disease had been quiescent for many many years - yet when I was accepted onto a Clnical Trial to receive the TIES device implantation - [self elected surgery] in order to cease using a collection pouch - the resultant happenings were severly detramental to say the least.  Four and half years on from TIES explant I am still in the process of reparative surgery and that has had the benefit of best focussed intention, and private surgery to try and address the unforseen [by me] outcome!

Subsequent Colorectal Clinicians and Consultant Surgeons have expressed, that owing to my Chrohns 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 Chrones Diagnosis and its implications.

... AND one positive element for the greater good of all Chrohns 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 where you may elect to have the proceedure - and by whom - the statistics will speak for themselves - but please make sure the statistics which are furnished for your contimplation refer to exclusively Chrones Patatients and are not overall statitics for bowel surgery.

Ask many many questions and try to research those questions prior to your consulatation 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 Crohns Diagnosis.

The TIES Concept is a great concept and time will tell whether that particulaer 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 positiove 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 appropropriate solution for you?

 

Good Luck

And Best Wishes

Jayne

PS I guess you may have come accross 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 oppinion is always possible.

Best Wishes,

Jayne

"Are they concerned with you possibly losing more small intestine if the Crohns spreads? I’m guessing the high risk factors for you are the Crohns 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 (crohns 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 - crohns 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 would explore how my digestive system is looking in terms of crohns 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 carefull 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 crohns 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.

its not my intention to debate it here. just to pass the dialogue my own surgeon told me after  complete removal of 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, 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 effected.😲😲

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..

Lets pass the peace pipe.😉 and do a healing dance.🕺🕺

- Warrior