You may want another opinion, as I agree with your GP. Abscesses do not resolve with antibiotics (generally), and the fact that it returned probably means you have a leak. A redo may be in order.

Jan  

An invasive radiologist can reach just about anywhere. It really may need to be drained, but perhaps by methods your surgeon can't perform himself.

Thank you Jan. I thought the same. The MRI scan noted a leak is probably the cause but my sergeon doesn't want to admit it's a leak. I feel like I'm being fobbed off with antibiotics. 

A second apinion is difficult as the sergeon that operated on me is the best for J pouches. I traveled 6 hours to st marks hospital in the UK who specialise in bowel disease. My sergeon did mention a pouch redo if the antibiotics do not clear the problem. But after previous antibiotics and the abcess returning I don't have much hope at all. And don't think I should be waiting months in this state. Should I be pushing for a redo? Can a redo be preformed while I have active inflammation? 

Do you think this could be the cause of the difficulty in emptying the pouch also or could this be another factor?

thanks Scott. I was told by a number of people including a radiologist that it could not be drained. I wish it was easier! I don't want to go back to the illostomy as I'm a 35 year old female and I was never happy with it previousy.  

Hello, Zoe. Please try not to worry or be stressed. You will find a solution. I know this is a big disappointment for you, and painful, please try not to let the stress and worry overwhelm. If you spiral down you might freeze or lose the ability to make decisions, or find a solution, or find a good surgeon. Take back control. Even if your current surgeon is the best, there is always, always a second-best waiting in the ranks who is the Best, for you. If you feel your surgeon does not want to admit the leak, find the next best surgeon. Google and search. Call other hospitals for names of their top colorectal surgeons. Make a list of names and choices that are available to you. Having choices will give you back some power.

Don't strain when you need to go. I have found that leaning back gently against the toilet tank, as if reclining in an armchair, helps me every time. It seems to straighten out the j pouch, and the pelvic area, and allow smooth emptying without straining. The idea is similar to people who have their colon and use a footstool or "squatty potty" to put their pelvic area in a natural position for emptying. This is why India and China use toilets set low in the ground. They have the right idea. Try leaning back for a minute or two, then sit up tall if you can. It might take a couple of minutes before anything happens. Don't give up. Keep trying. I hope this works for you, Zoe.

Hello winterberry,

Thank you for your kind words and support. I can't believe how much this illness has stopped my life. 

I couldn't cope any more and contacted my sergeon yesterday. He advise to go back to an illostomy, build myself up and gain weight and then he will perform a redo when the time is right (3/4 months) he said I'm not well enough to preform this now.

Its not what I wanted but I can't go on like this, it's really effecting me mentally and I hate putting my lovely partner and parents through all of this also. They are so worried about my weight which is now 43kg. I'm 5'5 and this is the lowest it's been. It's going down daily  

The thought of preparing myself for more more surgery is very upsetting but I need to be strong as you said.

Thank you for giving me a boost! 

I hope your health is good and life is treating you well 

Hello Zoe,

Like yourself, I travelled a couple of hundred miles for J pouch surgery.

From what you've described, I assume you had takedown completed and the complications have arose since.

If so, I feel that maybe you've been prescribed Antibotics to treat the cuffitis and prevent further infection rather than cure the abscess.

The suggestion of an ileostomy is probably a temporary loop, like we had prior to takedown and will only be required until you achieve a healthy weight and overcome your current symptoms.

Do you know what's causing the weight loss ?

Are you not eating due to the fear of being unable to empty or are the Antibiotic putting you off your food.

I was wondering, would it be worth attempting to catheter your J pouch first, rather than revert to a loop ileostomy

www.redliongroup.org/j/the-new...-catheter-conversion

Although you're currently being treated at St Marks, you can always request a second option fron within St Marks.S

St Marks gained its world wide recognition for a reason.

Hi strange,

Many thanks for your comments. 

basically I had the J pouch created in August 2015 but soon after developed an abbcess caused by a leak. My take down was delayed in the hope that the abbcess and leak would heal alone with antibiotics. I had 6 months worth of antibiotics and the last MRI showed no abbcess. 

As soon as I had my reversal (June 16) it reappeared. I was admitted and when examined they also saw severe cuffitis. My surgeon believes it's the cuffitis that make it difficult for me to empty my pouch. I have urgency and go to the bathroom but only small amounts come out. Im up in the night 4/5 times and it takes 30/40 minutes. During the day it settles. 

I have been using suppositories to try and calm this but it's not worked as yet.

My weight loss is caused but the antibiotics. I have been taken very high doses for a long period of time. They put me off food and I suffer with sickness. 

My sergeon has suggested that half my problem is the cuff and that's why he has recommended going back to the  Ileostomy to give everything time to settle. 

He said he would then remove my cuff and redo the join of the pouch to hopefully solve the abbcess/leak. 

They tried the self catheter in hospital but because of the pain with the cuff it wasn't possible.  

Can I ask how you are finding your pouch. If you were me would you go through all of this again? I know you can't decide for me but you seem very knowledgeable! 

Thank you for your support 

Zoe, if your surgeon feels he can salvage your pouch by removing the rectal cuff and rejoin the pouch (pouch advancement), it is worth looking into. That said, I would think that a complete pouch redo should be an alternate option if the sinus tract to the abscess cannot be completely addressed by pouch advancement.

I also agree that a second opinion makes sense, even if your surgeon is considered "the best." Sometimes a second pair of eyes on the situation will reveal something that was dismissed. I hate to say this, but there are times when the ego of the "super great" surgeon can get in the way of reality. They take it personally if there is a failure or poor outcome. Not saying this is true in your case, but putting your life and health on hold for months on end seems unreasonable to me. This is not a unique thing for the UK, but I think it is compounded by your long wait times for appointments and surgery.

Bottom line, I would push for a different approach (surgical repair). Since the queue time will be long, you could still be on antibiotics to clear this up (not likely). If that miracle happens you can always cancel surgery and give that space to the next person in line. I know things are way different with the NHS and the US insurance system. Neither is perfect, but you have to work with what you got, and get the most out of it.

Jan

Hi, Zoe.  perhaps you could ask for a second opinion from another colorectal surgeon at St. Mark's?  There must be more than one colon surgeon on staff. They are all colleagues and must hold their patients' welfare uppermost in mind so a second opinion from another staff should not offend. If you do seek a second opinion at St. Mark's, tell your surgeon so he is in the loop. I find that writing all pros and cons before making a big decision can make them clearer when your mind is twirling and trying to hold two opposing thoughts. Eat soft, high protein foods to help your tissues heal and keep up your strength. Vegetable soups blended smooth. Soft boiled or scrambled egg, or baked tofu, smoothies made with unsweetened yogurt, avocado, banana, soy milk, with turmeric (to calm inflammation) might treat your pouch gently. 

Ok we have been through this before. My son had an abscess and fistulia right after his first takedown. He fortunately does not get fevers but the abscess was huge.  They put in a drain to drain the collection and  put him on TPN for 2 months. Didnt work. Then our surgeon took him off the Jpouch  in the mean time we had to change doctors and hospital.  He stayed with ostomy for almost a year. Had second takedown in January of this year. Well two months later the same abscess and fistulia have come back. In april, i think they put in a drain. It is draining the collection but it is still there. In two weeks they are going to try putting in a biological plug. He has has lots of MRI and CT scans done. Lots of time with interventional radiology. This plug is being custom made. IR has told us that what they are trying to is rare. And they have only done it less than 20 times. I dont know all the specifics. If this works and thats a big if, my son should be fine. The abscess has been drying up slowly. Dont give up. You may have other options depending on how big the leak is. We are being treated in NY, not sure where you are.  I would think since you have this abscess that you also have a fistulia. And a leak in your pouch somewhere. My son's is in a very difficult spot. It took a year to figure out where is was. And it is all internal.  Im sure your pouch can be saved. It sounds like they have to plug up the hole. Good luck to you. All is not a total loss. 

Thanks for all your comments I will definitely get a second opinion.

Jan I'm lucky enough to have private medical benefit with Bupa so I don't usually have to wait long for medical attention.

I think I've decided to go back to the stoma for a while and give me chance to get my life back and hopefully my body strong enough for the pouch advancement. To be honest Jan I didn't know the difference between the redo and advancement, I Thought they were the same thing so thanks for letting me know.

Jeffsmon I am in the UK and my hospital is in London. I really hope your son has some luck this time and things work out the way you hope.

Zoe, I'm pleased you've managed to get your head around things and come to a decision; it may not be where you were expecting to be but it'll be all worth it in the end.

You asked how I'm finding it since takedown; well, my outcome is far better than I was prepared for and Yeah, if I had to, I would go through it all again; it was worth it.

There were times, just after pouch surgery when I had to wear an adult nappy and have a NG tube up my nose, which did make me question whether I'd made the right decision, luckily, this was short lived and there was very little I could do about it.

I also had to endure leakage from the temp loop ileostomy which caused the most excruciating pain I'd ever; the skin around my Stoma was weeping, oozing and I tried everything and nothing worked.

My output would not stop, it was so difficult to change the Stoma appliance without burning my skin further and spraying output all over the bathroom floor, which occurred on many occasions and, I had to clear it up all by myself, whilst recovering from open surgery (by now I'd left Hospital).

Again, I questioned whether I'd made the right decision but what was the alternative other than proceed, otherwise, what I'd already endured would of been for nothing.

Luckily, Jan from this forum suggested I use ilex paste for the weeping skin around my Stoma and applying it totally transformed what I'd been experiencing, made all the difference..... Thanks again Jan.

A month or so after being discharged, I also suffered from severe dehydration, which resulted in many Hospital admissions by Ambulance for IV fluids.

I wasn't able to consume a sufficient level of fluids orally, regardles of how much I was drinking.

Would I go through it all this again; to acheive a life without a colostomy bag hanging from to my stomach............ most definately  YES !

........... Although I'm male; I guess it's like childbirth.

Hi strange,

Thank you for your comments. It gives me some hope at the end of this dark tunnel. 

I thought I would be done with surgery and could get on with my life but it's seems not at this stage. 

I really don't want another stoma but I think it's the only way I'll be able to get a normal night sleep and to eat and build myself up. 

I don't feel that I have control of my body in my current state and every day is a drag.  This never effected my mental health until recently and I know that I need to do something. 

Thanks everyone for your support, and kind words. I wish you all days full of enjoyment and to be full of health 

Zoe, 

St marks is by far not the best in Europe, there are many, many others. But you do not need the best, just better.

Here in Paris I have an excellent  colorectal surgeon who is a j pouch specialist and does them through laporoscopy... he took on my k pouch and I am a nightmare! 

Pm me If you are interested and I will give you the name.

Sharon 

@Zoe, I cannot speak for the J-Pouch...I never had one( always been on the table ), and sometimes think "what if" I did( was offered a one step by the CC few months back, Remzi who left the clinic)....sorry to hear about your complications. Personally I can speak for an ileostomy, have had it for 11 years. I have 25% of the colon floating in pelvis- will piggy back on this in a minute( maybe someone can jump in ). However, I can tell you the ileostomy does well.....suck. Also, your anxiety is completely normal, see my username when I signed up years ago( I was 19 ). However, yes an ileostomy is not the greatest, and yes it is a pain( but not in the sense of physical pain ). I can eat what I want....Protein shakes, Peanuts, Peanut butter, fish, chicken, rice. I will give you an example meal:

Dinner

2 Fillet of fish: 60 grams protein- 400 Calories

2.5 servings of rice: Over 600 calories- 20 grams protein...A lot of carbs.

2.5 Servings-G2- Has electrolytes....130 Calories, 34 grams of sugar, 34 Grams of carbs. 

So, that is my diet around now for one meal. That's 1130 Calories, 80 Grams of protein, Carbs for days( not really just didn't feel like calculating in head @ 3:40 A.M my time. I know Europe is ahead of time. My old diet I will put below. , which was about anything I could get my hands on......So, I am not trying to convince you to have a surgery or not. I am just saying if you opt for something, and you have an ileo...even just for a few months....I can tell you, I can ALMOST eat anything I want...ok Grapes get me...Just FYI, Beer( so I did shots ), Milk( if I drink too much ) and also...Heads up about protein. I chose to eat egg white powder protein. Also a little trick....add vanilla ensure to the egg white powder protein. I would really watch out for a protein with " Whey" if you supplement. Whey protein is quickly absorbed, hence why Body Builders like it( ahhhh...where is Rocky Balbao when you need him ). However, it is also quickly out.

      Now initially, when I first had the Ileo, it was not like that. 1.) I had anxiety. When you have this, it can literally speed up your insides up to 3-5x. 2.) Everything was new, I was paranoid from the shock of surgery and also asked myself, " If I eat more, will it drain more?" - Which I learned, if you don't eat much....the ileo will drain more especially with first meal, if you did not eat anything much do to this question. 3.) Compounded with Anxiety, Depression. I say this because, when I got depressed, I would not each much, some eat more when they are depressed( I am the exact opposite ). So I would say, mental health plays a huge role. 4.) LIVE in the moment, but do not be a PRISONER of the moment. 5.) Sleep.....I remember I suffered with sleep, Hi it's now almost 4 A.M ha! However, I would advise, and this is so under rated.....and needs more forefront. My other problem was lack of sleep.....which sometimes when you lack this, it easily can lead to bad or not clear choices. It could be in a doc's visit, and your so tired, that now your passive with a doctor or make a decision based on angst or are paralyzed in thought with lack of sleep and anxiety. Like an ominous cry for help, battered with impulse decisions to make up for the paralyzed time. Hence, " Paralysis by Analysis." Guilty. 6.) The ileo is new....

Foods I ate when My ileo was new: Back to Basics

I would eat light meals( understand the above writing ) for many reasons. However, what helped was bananas, Applesauce.....Not going to lie, had applesauce with every meal besides Breakfast....that is why I ate bananas. Those seemed to help. Also toast, leaving the burnt part on. Then before you know it, I was able to eat more. Then more frequently.

So, why did I write all that....just to let you know, I never shared your experience in a physical sense....however, your anxiety( I feel we share in some sense) is normal. Also, if you do have an ileo....I know a lot of people do not like it.....however, I can say...I can eat anything, besides a few things, that I wanted. Large portions, small frequent portions.....Does not matter. Also, had this for a 11 years. I do understand your concerns, as I have contemplated the J pouch, with concerns of my own.  I don't want to sway you in anyway, I am just saying, if your worst fear( besides what you are going through now ) is an ileostomy....If I can do it, I know you can. If it does come down to that....just think it will be temporary. I will give you a sample meal of what I ate at my height...and also Break down something if you need. I can also put a picture of me next to a Famous Wrestler( I can attach in a reply( you can see the weight gain if you like )....I got to the point where I was adding mass, we had to squeeze us both into the picture. Btw he stands over 6 ft...260 lbs...if your a wrestling fan, he wrestled the Rock, etc. So I went from being really frail at 129 lbs( prob lower )....scary weight....to 207lbs, not now, but at one point. So, I hope this qualms your fear of anxiety in relation to an ileostomy. Again, if it comes down to it, I know if I can...you can to. 

If you dial back to where I said I had 25% colon left, just floating. Well, I can tell you the UC never left. Maybe someone can chime in, idk if the same theory applies to a cuff. 

***Somethings I would do.....the worst part of an Ileo.......is wear a good hernia belt. The last thing, as I am sure you know, if you get a temporary ileo is to get a hernia. It can be corrected with take down I would presume...but why risk it?

If you ever need help with a diet, feel free to message......if you end up getting an ileo, even if it's just temporary. 

Well, I am telling all the things I wish I would have been told. I will post a  sample meal( when I was next to the wrestler )....also if you have a question on a specific food, or why I ate a certain way, just ask. The things I would eat outside of the sample,......Yogurt! Even Greek Yogurt( less fat, more protein ). Rices I mixed up from white to brown. It adds variations. Also, ate a lot of all natural foods. I would eat eggs for Breakfast, Turkey Bacon, oatmeal, and even cereal. Lunch.....not much variety, turkey off the bone( has less preservatives )....I never ate Pork. For many reasons....overall health. I would eat all Natural Peanut butter and Jelly. Yogurt....good for probiotics, but if I ate to much of it, gave me some problems. Fish was good, but be careful at first. Also lamb.

Also, whatever choice you make, I wish you well. Sorry to hear about all your problems. Like I said.....I had much anxiety, etc. 

3 Chicken Breasts

2.5 Servings of rice

3 Baked Potatoes

- 1 meal. 

- Also whatever fruit or veggie. Sometimes applesauce etc.....

Hi Zoe! Hope this finds you moving ahead in your medical care, and maybe able to eat a little more. I do not have experience with pain, abscess or fistula, so I really am so sorry and can only begin to understand your frustration and stress! I just had mucousectomy and pouch advancement surgery one week ago,  hoping to resolve ongoing high frequency issues (30-40 day) and partial prolapse that contributed to that. Just wanted to clarify the difference between that and a redo, as my surgeon laid out all the options for me. I was lucky to have  skated out with plan A - just the mucousectomy (removing the mucousal lining from entire pouch)  and the pouch advancement of removing the rectal cuff, pulling down pouch and hand sewing pouch to top of anus. He did warn me, however, that it may require a temporary ileo done either Laproscopic or open. If that hadn't worked he may have pulled out and worked on pouch, or if none of those results were acceptable he may have  removed current pouch and make new one of more small intestine. I think that is typically the "redo" though maybe redoing pouch and putting it back in could also have been a redo.  In your case it's understandable that a temp ileo would give you time to get stronger, and I think that's important. There are so many things they can do but unfortunately surgeons  don't know what they can do til they start the surgery. In my case, though it's early, and I'm on limited diet, my frequency is way down! I hope for you, you can get strong and get ready both physically and emotionally for a successful surgical fix a couple months down the road! Good luck and keep us posted!

laurie

Hi All,

thanks for those that have posted recently. I thought I would let you all know that I'm back with a temp ileo, I couldn't go on like I was any more. 

The surgery was just over two weeks ago and I'm starting to feel human again. I'm still down that things didn't work out the way I hoped but family and friends have helped me through this.

crazy1 - thanks so much for the tips on diet. I am finding it easier to eat now and will takes this on board.

laurie - thanks for your post. I hope this op works for you and I appreciate you explaining the different options to me. Can I ask where you are? Are you in USA or UK? Sounds like you have a good surgeon who knows what he is talking about. I hope to look into this further once I'm stronger. My surgeon said I need to wait at least 6 months before he will even consider doing anymore as he said my body isn't ready. I think he is right because I have not felt worse. Let me know how you get on

best wishes everyone xx 

Zoe, I'm in US, Chicago but my surgeon was at Cleveland Clinic until recently. Get strong! I do believe that temp ileo will allow you to do that! Take it slow and wishing you good health and hopefully successful pouch in the future!

laurie 

Thanks for the update Zoe! I wish all the best to you!