CSKIND,

I am not sure there is a clear cut answer to your question, but I will share with you my experience. I am not sure if I had cuffitis prior to my takedown as my surgeon never indicated I did, but I did have a lot of nighttime leakage of fluid that he felt was diversional pouchitis when I had the temporary ostomy. Looking back, this may have been due to the cuffitis. Fast forward 17 months after takedown and I am seriously struggling with refractory cufffitis that medicines are not helping with. I have been taking rectal meds on and off for over a year with little to no success. I am now looking at mucosectomy and pouch advancement surgery.

In retrospect, I did have inflammation at the time of surgery as I was on high level steriods and I had a stricture form immediately after takedown at the anastomosis that required several dilations under anesthesia. We are not sure if the stricture has formed due to surgical trauma or inflammatory disease or possibly a combination of both.

If I had to do this over again, knowing what I now know, I would have opted for a mucosectomy and hand sewn pouch to rid myself of as much disease as absolutely possible. However, note that my situation does not mean this will be yours. I am just sharing my experience.

I seem to fall under option one but have been told that my rectal cuff is exactly the length it should be (not to long). Is your cuff longer than the recommended length of 1-2 centimeters?

I agree that there is no solution that would be appropriate for all. Many of us were in an active flare at the time of colectomy, so it would be expected for cuffitis to be present, at least at first. Plus, even if you have cuffitis, it is not a given it will be a serious problem, just as there are degrees of inflammation in the pouch (all pouches exhibit some level of inflammation, but it is the symptoms that determine treatment in most cases.)

In my case, I had a 1-step procedure, with a 1-2 cm cuff. It was severely inflamed at first, then resolved over the next few months without treatment. Then, it returned later, but responded to treatment. It has been 17 years and I am functioning well.

Bottom line, each case should be treated individually, and I don't know that you can predict your outcome prior to takedown. I certainly would not want to opt for more surgery so soon.

Jan

My surgeon has postponed the take down surgery in the light bleeding. So the plan is to live for another 3-4 months with the inconvenience of stoma. Keep taking hydrocortisone enema twice daily. Then he says he will mobilize the pouch, remove the retained cuff and bring it down to the dentate line and will use hand sewing. He will do all this perianally because he says the abdominal approach could be risky. Is he right or I shall consult some other surgeon?

I also argued that it is possible that the bleeding is coming from suture line because I started noticing blood approximately 10 days after my surgery. But cuffitis does not manifest so early ( it is a "late complication"). He agreed. He says pouchoscopy is required to confirm the cause, though he feels it should be cuffitis ( he has seen through proctoscope. How safe it is to do pouchoscopy when the pouch is so new?

Another thing to consider is whether the ileostomy diversion itself is promoting cuffitis (diversion proctitis). In that case, restoring the fecal stream would be the appropriate treatment. The fecal stream provides nourishment to the mucosa.

I definitely would want a flex sig scope before even beginning to consider more surgery. It is smaller than an anoscope, so I would not worry about having it done this early. WAY less trauma than the proposed surgery. Transanal is the typical approach for this surgery, by the way, so that wold not concern me.

I would want a second opinion, because it seems your surgeon might be a little too eager. I could be way off base though...just a feeling.

Jan

I just saw this post and have not seen all the history, but it sounds like you have not had a scope yet of the pouch to confirm diagnosis? I also had unexplained bleeding between colectomy/J=pouch creation and takedown, and I had 3 (!) scopes of the pouch. I had bleeding and severe inflammation and ulcerations and it was all along the anastomosis line. My surgeon said he had never seen anything like it, and while it was never determined why it was happened, possibility of my being allergic to staples was considered. Things did improve after my GI injected it with epinephrine and inserted some clips to help stop bleeding. I was able to finally have takedown seven months after first step.

-Laurie

lhh65 : My doctor is now planning to do pouchoscopy. Is it possible that pouchoscopy itself will do some harm to the pouch (My bleeding increased immediately after proctoscopy). It was brought under control by taking hydrocortisone enema.

My Bleeding remains under control if I take two applictions of entofoam (hydrocortisone). It starts again if I miss a dose. What is your future prognosis. Has your problem been resolved permanently? Will you be taking medicines for the rest of your life? I am very depressed because I decided to have surgery only to get rid of medicines (I was told that after surgery everything will be normal, UC will be cured and there will be no need for taking immunosuppressants). I did not try azathioprine because I was scared of its side effects ( only 35 cm of my colon was diseased).

Jan Dollar : I read one of your post where you have told that you are taking immunosuppressants of the top order and are having the side effect of arthritis. I felt sad to read that post because I opted for surgery only to avoid taking these drugs.


As per the info gathered so far i feel there are three possible causes of bleeding before take down surgery: (a) cuffitis (sol: remove the cuff) (b) diversion proctitis (sol: go for an early takedown) (c) bleeding from suture line of the pouch (sol: see the article below)



Pouch Bleeding

The ileal reservoir may bleed postoperatively either from the suture line or because of pouch ischemia. Blood from the suture line is generally bright red in color and if significant, may require examination under anesthesia, endoscopy with abundant irrigation and fulguration, or suturing of the bleeding point. Copious dark red blood with clots implies pouch ischemia, although this does not seem to be a common problem. Fazio and associates4 reported bleeding from the pouch in 38 (3.8%) of 1005 patients. Thirty of their patients were treated with local irrigation of 0.9% saline and adrenaline 1:200,000, and 8 with transanal suturing.4

We recently presented our current experience with perioperative pouch bleeding in 34 patients.27 Eighteen patients bled within 7 days of undergoing IPAA and 16 bled 7 days after the procedure. After initial resuscitation, 20 of the 34 patients underwent pouchoscopy. A bleeding point was identified and coagulated in 6 of these 20 patients. In the remaining 14 patients, generalized oozing with no distinct bleeding point was found; the pouch was irrigated with iced saline and saline with epinephrine (1:100,000) enemas. None of the patients in our series required reoperation for bleeding.27

Bleeding that occurs after 5 to 7 days after the operation may suggest a partial dehiscence. This should be investigated by gentle digital examination and if necessary, the anastomosis should be revised.

Primary sclerosing cholangitis, an uncommon disease of unknown cause that is characterized by chronic fibrosing inflammation of the bile ducts, is associated most commonly with chronic ulcerative colitis. Patients with primary sclerosing cholangitis who undergo proctocolectomy with a permanent ileostomy have an increased risk of peristomal varices. Kartheuser and group evaluated the risk of perianastomotic bleeding after IPAA in patients with both ulcerative colitis and primary sclerosing cholangitis. They concluded that in patients with both conditions, IPAA is safe and not associated with perianastomotic bleeding. However, in such patients, the risk of postoperative complications is high, and these patients require detailed preoperative clotting studies.28

Postoperative pouch bleeding after IPAA can be successfully managed nonoperatively. Pouchoscopy with clot evacuation and cauterization of visible bleeding points followed by iced saline or saline with epinephrine enemas is successful in managing perioperative pouch bleeds after IPAA. Figure ​Figure22 provides a comprehensive treatment algorithm for pouch bleeding.

Having surgery solely to avoid taking drugs is one of the reasons for surgery that sort of make me squirm. None of us knows what is in our future and what may be necessary to be functional, including future drug use. But, you have to follow what you feel is right.

By the way, arthritis was not a side effect of the drugs I am taking, but the drugs were specifically for the arthritis, so don't assume that I am sad I am on them. I am actually delighted, especially since they are working! At the time of the surgery, they did not even exist.

Jan

just another thought. In my experience, surgeons are sometimes far too "trigger happy". Is it possible that you can get another opinion from a GI doctor? Also, I cannot believe anyone could determine anything without doing a scope. Thats for sure. I would be extremely concerned about this surgeon suggesting additional surgery at all, before even scoping.

I had scoping and a surgery for anal dilation done between steps 2&3 of jpouch creation. It did not cause further problems at that time. I am wondering if you have some stricturing going on, hence the bleeding after proctoscope. So maybe scoping under anesthesia might be in order?

jeane: Since you are considering mucosectomy kindly discuss the option given below with your surgeon. Kindly do let me know what he/she says.

I'll discuss this with my surgeon because he says the only option in my case is 'hand sewen anastomosis.'

Stapled Mucosectomy: An Alternative Technique for the Removal of Retained Rectal Mucosa after Ileal Pouch-Anal Anastomosis (Metin Ertem and Volkan Ozben)

Stapled mucosectomy with a 33-mm circular stapler kit at the time of ileostomy closure was scheduled. Following the application of a purse-string suture 1 cm above the dentate line, the stapler was inserted with its anvil beyond the purse-string and was fired. The excised rectal tissue was checked to ensure that it was a complete cylindrical doughnut. Histopathology of the excised tissue showed chronic inflammation. There were no complications during a follow-up period of 5 months. Because it preserves the normal rectal mucosal architecture and avoids a complex mucosectomy surgery, stapled mucosectomy seems to be a technically feasible and clinically acceptable alternative to the removal of rectal mucosa retained after Restorative proctocolectomy performed with a stapled IPAA

Source: http://europepmc.org/articles/...27dGbHLbfsqijuUTyd.2

My doctor did not like the idea of stapled mucosectomy as explained in the above post (and the link to the article).

He has decided to go for hand sewn technique to connect j pouch to anus and remove the 'rectal cuff'.

Menwhile my inflammation is completely under control and I am taking only meslamine suppositories 500mg twice a day. Feeling extremely good and very energetic. Doing better than my fellow "normal" beings.

Shall I ask my surgeon to do the take down without attempting to remove the rectal cuff because I feel it can remain under control with recal application of meslamine which is harmless.

OR

I shall allow him to remove the retained rectal cuff at the time of takedown? (The takedown has been scheduled in the month of MARCH)

Another question : My first surgery was conducted on 20th September. In the context of my surgeon's plan to hand sew my pouch to anus and removal of rectal cuff at the time of takedown, is it true that more the delay better will be the outcome?

Since I have a sinus located where i was reconnected and some level of cuffitis, if i were to need surgery again one day due to this sinus abcessing, could i possibly have Pouch advancement surgery with mucosectomy done perianally / transanally.? without having a redo? does this require a temp ostomy?

could this area where sinus is be "cut out" and re sewn back together this way?

cskind,

I am confused here. Do you have a jpouch at this time or is your next surgery going to consist of creating the pouch (hand sewn) with a temp ostomy or are you having pouch advancement surgery with mucosectomy for the inflammation in your cuff?

Speaking from someone who has dealt with chronic cuffitis and inflammation since my takedown almost two years ago, I wish I had opted for the mucosectomy at the time of my surgery. Then again, my cuffitis is not responsive to rectal meds which I have been on pretty consistently since my takedown.

The issue at hand is that even with a mucosectomy, they cannot guarantee you may not still need rectal meds and will no longer have any inflammation at all. Islands of mucosa have been known to grow back. The mucosectomy gives you a much better chance of eliminating chronic inflammation in the rectal cuff and ATZ, but it is no guarantee. If I were struggling as you are before the takedown, I think I would opt for the mucosectomy.

Pouchomarx,
Most surgeons will attempt to perform the mucosectomy all through the anal area but will warn you that you may need a midline incision up to the belly button if they need to get into your abdomen to detach and advance your pouch or create an entirely new pouch as part of the re-do surgery.

It is in your best interest to have a temp ostomy as I understand the anal pain is unbearable from a mucosectomy and you want to avoid sepsis at all costs. The anal area needs time to heal without anything passing through there. At my last consult at CC with Dr. Remzi , he told me I would be begging for an ostomy due to the rectal pain if he did not automatically perform one as part of the re-do surgery.

Also I was told by one surgeon they will not cut into the anastomosis as it would impact sphincter control. I asked if they could do this to open up my stricture there. My current surgeon does perform this tactic where he cuts a bit into the anastomosis to loosen up the stricture, but I was nervous to agree to this.

My assumption is if you have cuffitis and a sinus, you are a better candidate for mucosectomy and pouch advancement. I worry that the chronic cuffitis may create a sinus/fistula for me and would not really know what the symptoms of a sinus are.

JEANE

1. The surgeon decided to perform 2 step surgery on 20th Sept 2012.

2. The first step involved total colectomy, construction of J Pouch and a temporary loop ileostomy.

3. The above mentioned double stapled IPAA procedure left 2.5 cm rectal cuff.

4. On 10th Oct 2012 rectal bleeding begins.

5. On 1st Nov. Surgeon performs proctoscopy;notices bleeding in the rectal cuff region; suggests hydrocortisone enema.

6. Hydrocortisone gave partial relief, but with mesalamine suppositories ( now taking once a day) the inflammation is fully under control

7. The Surgeon's PLAN is now to perform transanal hand sewn mucosectomy and postpone takedown till the rectal area is healed.

8. My surgeon delivered the following message yesterday, in response to my query:

quote:

The present day practice world over is to do stapled anastomsis because of ease and excellent continence function. Doing a mucosectomy involves the risk of decreased continence function. But in the given situation we dont have the choice but to do trans anal redo procedure and take down the ilestomy some time later.

9. I understand the two major flip-sides of performing a mucosectomy:

(a)The 'nerves of incontinence' can get damaged due to the stretching of the anal canal and sphincters, along with traumatization of the delicate area at the dentate line. Episodes of night time seepage can increase.

(b) Even meticulous technique invariably leaves behind mucosal "islands" that are subsequently hidden under the anastomosis. The stray cells that are left in place may re-grow and raise the risk for ongoing inflammation.

10. There is no "Irrefutable Law" that the above risks will indeed become a reality in each and every case. These are just the dominant trends or possibilities. MANY people report excellent long term stability and continence after mucosectomy.

I HOPE my surgeon is able to mobilize the pouch trans anally, obviating the need to reopen the abdomen. I also wish that he completes the hand sewing procedure in less than 20 mins, because more the time taken more will the damage to anal sphincter muscles.

Cskind,

If you cuffitis is under control with meds then why the surgery? They are only proposing this for me as I cannot get the rectal cuff and ATZ under control with the medications. I am guessing that once you start passing stool through that area you will never probably be able to get the cuff completely healed, thus you would be in my situation and maybe he is trying to spare you from a lifetime of rectal medications.

I never had bleeding before my takedown. It only occurred several months after Step 2 and I was suffering from massive butt burn and anal irritation for many months before I started to bleed, but I did have an ulcer on the anastomsis and inflamed ATZ. The antibiotics seem to help that for me mor so than any rectal medications I have tried.

Dr. Shen indicated you can take rectal medications forever (if you can deal with that) if you have chronic cuffitis. Even if you have cuffitis and you are asymptomatic, they still do not go through this procedure many times. You would need to be checked annually for dysplasia concerns in the cuff, but it would eliminate the need for a more invasive surgery where the odds get reduced every time they need to do pouch salvage surgery.

Your situation is actually better (for lasck of a better term) in that you will have avoided a takedown surgery only to be possibly followed by another operation to detach the pouch, handsew it and have another temporary ostomy while the anal area heals. I do think you and your surgeon are making the right decision for better long term function based upon your current medical issue. I understand they often can handle all of this trans-anally. As a matter of fact my current surgeon told me not to even worry about another ostomy, but at Cleveland the surgeon indicated he would not even attempt it without a diverting ostomy due to the pain level of the surgery and to reduce the sepsis factor.

Best of luck. Please let me know how you make out as I am most likely booking my surgery in the next 8 weeks.

Thank You for best wishes.

Yes, the surgery is to save me from future trouble.

Had this problem occurred a few weeks or months after takedown, my surgeon would have asked me to take mesalamine suppositories for the rest of my life. Then, it is also likely that this UC of the cuff (cuffitis) could have turned out to be a refractory case.

So, in a way, it is good that it has shown up before take down surgery.

I'll stay in touch and keep updating my status.

CSkind,

Please let us know how you are doing. I wish my cuffitis showed up before my takedown as your has, as I am now in the situation where I take canasa and hydrocortisone suppositories regularly as my case is chronic and I actually still suffer even with taking these meds.

Dear jeane

Hope you are doing well. This post is just to update my status. I am enjoying my life to the fullest. Working for long hours with full energy. My muscle mass has increased and my looks have improved a lot.

However, the pending surgeries have not yet been performed and I am still living with the external apparatus (the inconvenience is minor).

My doctor was away for a long time and will be back this month. A date for mucosectomy will be decided soon. I'll keep you updated.


How is your health?

Just a passing thought: In my experience eating simple vegetarian diet and taking high quality protein and vitamin supplements can give better results. Non-Veg diet may be associated with more problems after this surgery (not sure)

CSKIND,

I just saw this post as I am up at 4 am with incredible anal pain and feeling very defeated.

I have continual anal pain with bleeding on and off and unfortunately, no matter what I insert into my anal canal it seems to further aggravate my symptoms versus improve them. I know my main issue is a stricture as my anastomosis opening as the connection is about the size of a straw with ulceration around part of it and I have ulcers in the anal transitional zone below the connection that will not heal. So after struggling to pass stool through this inflamed narrowed area about 6/9 times a day, you can imagine what I feel like by the end of the night. Unfortunately I have not built up he courage to go for pouch advancement surgery as I just have a looming suspicion it will not be a success just as my jpouch surgery has not been.

I am at a real crossroad here as I have been fighting this constant battle for two years and I am completely and utterly exhausted and starting to shut down emotionally. I am in a very dark place and it scares me and a permanent ostomy is not what I prefer, hence the constant fight that I am clearly losing. Couple this with a constant lack of sleep, reaching for xanax to try and get 5 hours of sleep a night and I am literally an emotional handicap. This is impacting every thread of my life and internal personal relationships and I have become a very angry, ugly person on same days.

I have to contact my GI as I think I have run out of real medical options other than biologics or 6 mp. I am frustrated beyond words that a 2 centimeter anal transitional zone is giving me such heartache when my pouch seems to be functioning fine for months now. I am also tired of the 5/6 successive trips to the bathroom multiple times a day to try and fully empty my pouch due to the limited size of the opening at my connection site.

I guess my reason for this post it to try to motivate myself to get the help I need so I can move on with my life.

Also what do you take for protein supplements as I am leaning towards less food intake and more supplements and I will try a more vegetarian diet (I do eat a lot of veggies now). I am desperate to try anything to avoid my reliance on cipro as my only means for anal relief. Right now I would be happy to never eat solid food again due to my pain and discomfort.

Dear Jeane

I am really feeling very sorry for your condition. It is painful and indeed difficult to manage. Many things are required for successful management of a condition. First and foremost is the access to a Doctor who is outstanding in his knowledge and skills and has time to give personal attention.

If the problem is in the rectal cuff, left after IPAA, then the rational solution is to have that portion removed. Many times you get what you expect. One should never lie on the operation bed with 'negative expectations'. This is important because our subconscious mind is very powerful.

I cannot tell you about the mucosectomy/removal of rectal cuff because my Doctor wants to do it after the rainy season is over (i.e. after August). But I am busy during Sept-Nov. So I may decide to get it done after November 2013.


Let me share some of my experiences. Before surgery I was managing the problem through a very strict life style. The reason for surgery in my case was my urge to work more without having to fear about the relapse. I have got what I wanted. Earlier my life was punctuated with episodes of relapse and remission. Now all that drama is gone. I am now free to work, go anywhere to deliver lectures and make presentations. Stoma bag is giving only minor trouble. I change it every third day. I have a method to keep it clean and a special cloth to conceal it in a way that I can wear anything (Jeans and T-Shirt).

My earlier lifestyle, adopted to manage my problem did not allow me to be very mobile. This is because I took a very special diet that was not available everywhere. Let me tell you something that helped me a lot.

During the UC days, I had only 2 options either take heavy dose of steroid or eat the food as per the given routine: (This schedule kept my skin glowing, my mind sharp, and my health in perfect condition. The only limitation was a restricted life style, and a relapse whenever I took liberty either with respect to my food or work schedule, e.g working for long hours in the night).

Morning 5 AM: Pomegranates 3(do not swallow residue),
7AM to 8.30 AM: 2 kg curd and 2-3 banana ( Omega 3 fatty acids 1000mg + natural Vit E 200mg + Diavit plus).....I took COQ10 (ubiquinol) for one month, it had no effect on the disease as such but it did make me look younger. I loved it but it is very expensive for me because I live in India and the manufacturer is in USA, the shipping charges are very high)

11: 30 Bel fruit or its juice. Bel is a wonderful fruit. In my experience if you take large amounts of this fruit everyday in any form, the disease remains under control. But the problem is that it is not available everywhere and is quite expensive.


Afternoon 1.30 PM: Again Curd and bel or banana

Evening 5 PM: Pomegranates with rock salt ( do not swallow the residue; suck the juice and spit the residue)

late evening 7.30 PM: boiled rice and dal (pulse)

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Now I take usual/normal diet, Omega -3 and Diavit are still my favourite


FOR PROTIEN: I take Pentasure- HP (powder to be mixed in water) and Theraptin buiscuits


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Last but not Least meditation and spiritualism helps.

Please keep me updated on your progress, my DD currently has a failed pouch and a diverted ileostomy. We are in the process of getting two different opinions. The first is I suggesting we remove the rectal cuff because he believes it has a motility issue and is too long at 5cm. My DD pouch became extremely dilated and bogged down. Our next opinion should be sometime in December 2012 in Cincinnati Colorectal Center at the Children's Hospital. Please tell me how you are doing. I hope your surgery is over and your recovered and very happy.

I am interested to see if anyone posting here has gone for pouch advancement surgery as of yet?