Hello,

I have been struggling with this for about 4-months now; during this time, I have had 4 separate surgeries in an attempt to drain what started as an abscess on my left side about 2 inches away from my anus.  A Seton was placed to allow what appears to be a fistula to drain; have had it in for two months and will be going on a third by the looks of it.  Was just hospitalized this past weekend as it continues to become infected.  Not sure how this year is going to end, but it’s been over 7 years since the formation of my J-pouch and I’ve had nothing like this before.

I am so sorry I know exactly what you’re mean. I told them I was in severe pain again and that I swore my abscess was filling again. Went to see my surgeon and they said I had a rare large blood clot that formed. Right there in the office he opened it. I bawled my eyes out. I have a high pain tolerance and lost it. I cannot sit, barely can walk and miserable. I am hoping that Mayo has answers. It’s only a few days away. I will keep you posted and in my prayers. I have no life and suffering right now. My j-pouch was constructed in 1998 and yes I have had bowel obstructions and small bowel resections but this pain is more than I can handle right now.

Sorry to hear that Vanessa. Many thoughts and well wishes for you, and I look forward to hearing from you further. I completely understand the pain aspect.  In fact, I believe some of the pain I have experienced is worse than all of the surgeries (3) for the j-pouch construction etc.  I had UC for about 10 years and it finally necessitated removing my entire colon.  The other issue I am facing coincidentally is that I think I now have a hernia;  I have always made an effort to stay in shape and  even with this seton in place I was trying to get some light exercising/lifting and abdominal work in.  However, I’m thinking it’s going to be walking only for a very long while.  But like you, I’m also having issues walking now just around the house, I can hardly sit for any amount of time either.  I really thought I had my life routine in place with my j-pouch until 4 months ago;  the sense of normalcy I reached was manageable, but now, not sure which direction to focus on.  When you consider all the little things you have to do for comfort, hygiene etc.  having this seton and multiple surgeries adds a substantial layer to cope with.  Another obstacle that concerns me is that I have a job that I really enjoy, but I’m at the point of resigning because of the time off that I have needed.  Basically missed 2 months of work and might as well write off this week.  I hate more than anything to not be able to attend work and it adds guilt to my day; however reality is kicking in regarding my need to focus strictly on my health without any work related stress.

r/

John

I had to leave my job last week Friday was my last day. I understand completely. I am literally unable to sit to do my jobs nor the stamina to stand all day. My health has to come first as well. I am 43 but feel 103. This also is the most pain I have ever experienced and I am tough let me tell you. I can walk around and work with a bowel obstruction like it’s nothing. This is a different pain that is debilitating. I feel your pain literally. I use a peri bottle every bathroom trip because terrified of wiping and infection. The seton sucks and I do more sitz baths than one has time for and I hate it. I can’t work and hop in a tub multiple times a day. Pain meds don’t help either. I just am suffering silently. Whatever I find out how to help me I promise to share.

I just turned 52, retired from the military about 1 year ago. Of course, started what I feel is somewhat of a dream job, but quickly realizing the adverse impact my health is playing on me. Been with the company for 9 months, however, like this week for example, having had surgery last Sunday morning, I have not gone to work yet this week and have been working from home. I really can only do some of the work at home and since my work hours are 4 (10 hr) days, plus a 1-hour commute each way, I tend to dread the commute due to the sitting time.  I have the option to raise my desk and stand while at work or sit, so that helps.  However, with this being surgery #4, I am spent with the butt pain...lol.    Do you have a good support network with family etc...?  I'm trying to take it one day at a time, but the decision to leave my job is bugging me big time.  I know I need the time to heal, but that's another complex issue as you know; I had read the other night about some patients getting an ostomy bag again to let the area heal, however, I would prefer not to go that route if at all possible, had it twice during the J-pouch surgeries, and, although I got use to it, just don't want to deal with it.  Furthermore, once it was removed, they had some abscesses return.  The tough part for this type of thing is that more often than not, they are going to have to drain it by surgery and antibiotics have limited effect.  I am currently on Flagyl and Ciprofloxacin since Sunday, so I hope that the combination of drainage and antibiotics may help.  I could not believe I was heading to the ER again, but, it physically felt like somebody threw a baseball at my left butt cheek going about 60mph, it's like I felt it in my hip bone.  And yes, the squirt bottle, I take a small one with me when I leave the house and keep a larger one next to the toilet....not too mention a couple of boxes of gauze pads now.  I have my follow-up on Monday also, Houston, TX; the surgeon I go to is the same one that did the J-pouch 7-years ago. However, the hospital he is at is about 1.5 hours away, more sitting time.  My major concern, and his, as he mentioned it, is dabbling around with the sphincter muscle too much and messing it up.  I have been on and off this forum over the years, but I'm finding it more useful for info lately as I endure this unwanted abscess/fistula experience.

This seems utterly intolerable and I wish I had some great suggestions for you guys. However, when there are these sorts of ongoing issues there are not often many palatable solutions. A diverting ileostomy could provide a lot of relief by just reducing the amount of caustic fecal drainage on the open wound. But, I get how that is not a welcome thought. The only other thing I can think of, since pain meds are ineffective, is a possible nerve block. If a short term block relieves the pain, they can give a block that lasts weeks or months.

https://www.ncbi.nlm.nih.gov/books/NBK551518/

Jan

Vanessa and John, I had a similar experience.  I went to my CR surgeon due to pain in right butt cheek.  She didn't feel the lump, but over the weekend i got sooo sick that i emailed her - went in the following day for an an EUA and they found the huge abscess and put in a mushroom drain, and admitted me due to sepsis.  Anyhoo, the drain was just intolerable due not just to pain, but also the huge amt of  poo coming out of it.  I always try to stay calm, but this simply pushed me over the edge.

My surgeon suggested diversion and a few days later I had an end ileostomy.  Everything calmed down and i felt so much better/peaceful. I had already decided to have my pouch removed (and i did a yr. later) so the ileo was a little easier to accept.  The diversion/ileostomy was able to be done laproscopically, so i was out of the hospital in 3 days. (Unfortunately i had an ileus and had to return, but that's my MO).  I still had a seton (just a band, no mushroom drain) in that abscess/fistula, and another seton in an RV fistula. They were both hardly noticeable after diversion (very little discharge).   A yr later the abscess and shell was able to be removed along with the jpouch so that particular issue is gone - no more setons.  I knew i couldn't have lived with that drain,  so the diversion was pretty much a life saver for me.  I totally understand that diversion may feel quite drastic and undesirable, but it is an option you can discuss with your docs.  I so feel for you both, and hope you can find a solution that works for you.  Will keep you both in my thoughts ...

Thank you Jan and n/a; one thing I have noticed is that the surgeon's exam tables have you face down and rear raised up; I believe this inhibits the ability to accurately detect a mass in some cases; when I am standing, I can accurately pinpoint the area and I am going to mention to the surgeon the same; apparently they will take a pin of some style and poke the area in multiple locations in an attempt to see if they can break the surface; however, I was told that mine are very deep, which complicates things further.   For n/a, the drain you are referring to, is that a SETON?

n/a sorry, I didn't scroll far enough on your post, going back through it now.

Thank you all for your responses. I always thought this site was weird but then liked knowing I was not alone. I appreciate and empathize with all of you. I really don’t want an ileostomy again but I also don’t want to spend the rest of my days suffering. I am a mom with 3 young kids and 14 pets. I am used to being active and unable to do anything anymore. I also have scalp psoriasis, Crohn’s disease, and Rheumatoid arthritis atop this all. I kee cole ring autoimmune diseases like they are free handouts. I never have complained through al my 11 surgeries or anything. I have had some dark places with this recent abscess crap and glad to know others have been there. I am hoping for a solution and honestly at this point I think I would do an ileostomy even if it’s not what I want. Pain free is what I want.

Johnny, the table you describe sounds like the tilt table they used to use ages ago for rigid sigmoidoscopies (back before they had fiberoptic scopes). I have not seen one since, but I have not had the issues you’ve had.

Jan

Looking to educate myself more on autoimmune and/or compromised immune system info. I am of the mindset that absorption of essential vitamins/minerals etc..is an issue with the majority of colon-less configurations we find ourselves in and do not have a complete understanding of it.

John, the drain I had in the 4" abscess was called a mushroom drain.  Similar to a seton, but not quite the same - it seemed more like a catheter stitched into my butt cheek where the abscess was, than it did a seton loop.   I only had the mushroom drain about a week and don't really recall specifically what it looked like.  I just knew it was harder than a seton stitch, and painful for me.   I already had a seton - the yellow rubbery string kind, in my RV fistula - that RV seton caused no problems for the 5+ yrs I had it, but the mushroom drain in the abscess was a different animal to me.

My CR didn't poke me with anything - I just laid on my side and she felt around.  I also stood and tried to guide her to where the lump was, but she just couldn't feel it at that time, even though it was definitely there.

Jan,  yes, I believe it might be that style.  I keep asking myself, how can he not feel that mass during the exam. 

Johnny, actually nutritional deficiency is not a given just because of a colectomy. The colon’s primary function is to absorb water. In its absence the small intestine adapts to absorb moe water over time. Vitamin K is made in the colon by bacteria, but I have not heard of it being a big deal.

However, if you have small bowel inflammation, chronic pouchitis, and similar, then you can have deficiencies. Most common can be B12, which can take 3-7 years to manifest. Iron deficiency can also be common. Some people have short bowel syndrome if they had a significant amount of small bowel removed.

Jan

Thank you Jan.  

I don’t believe I’m dealing with those you mentioned.  However, I have had one run-in with pouchitis;  thought it was coming on again (about 2 years ago);  took green tea extract for a couple of months and had no issues.  Actually read about the green tea extract here.  Lately I have been trying to experiment  with probiotics also.

Johnny, good points! Green tea and probiotics are about maintaining good function and helping with the microbiome of the gut. There is even some data out there that they help with general health of the body.

Jan

When I had my fistula I found I got relief when sitting on a cushion with a coccyx hole cut out-I had an eggshell one shaped like an oval with the middle cut out, but then I found these black square wedge ones with the cutout in the back - it made for a nice little handle for taking it on the go-maybe a cushion might help? Since then I also bought a bidet attachment for my toilet. They are much easier to use than a peri bottle or even a sits in the tub-just some ideas. Best of luck!

Thank you, I have the cushions or I could never sit. I’m currently in the hotel room ready for my Mayo appointment . The bidets freak me out and not sure why. The peri bottle I have is not a normal one it’s really good. Stay tuned Defoe updates on the plan. I have a feeling I have multiple infections right now too 😩

Vanessa, best of luck today.  I also have an appointment this afternoon as a follow from ER visit a week ago.  I am thinking I have another pocket building up, will be sure to pinpoint the location.

Thank you , my mom is with me.

Good luck to you both.  Vanessa, cute pic!