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Yesterday I was ready for a whopping pity party...miserable, in tears, doubled over in pain and hiding it from my students. 

I just traded one set of pains and problems for another.

My surgeon fixed a bunch of small problems (hernia, obstruction, adhesions) and that is great but when he picked up my pouch he opened another can of worms. 

The staples or sutures that he used to tack it down in 2 rows have come partially undone (I get used to that happening but didn't expect the result)...leading to my pouch hanging off of only a couple of staples...and when it fills up...Wow! The pain. Feels like I am being stabbed from the inside out. Like they are being ripped out of the wall. The pain takes my breath away and bends me double. I am 6 weeks post of so I thought that I would have healed a bit and it would have consolidated with the wall...apparently not.

The pouch is hanging cockeyed so intubation is hit and miss and the tube hits some very sensitive spots before finding its way in. I get frustrated and yank impatiently when in school bathroom stalls (not a good thing) and hurt myself more.

The sacroilitis is back too...Worse when the pouch is full (tells you something) and when I wake up in the morning I get the double bonus of both the stabbing pain and the scaroilitis. (I call it full pouch syndrom now)

I know that I need to call my surgeon and have a contrast exam done but what can I say to him? Sorry, take out the staples? Put it back the way it was when I was complaining that it was down? He will think that I am crazy. (maybe I am)

Its like every time that I fix one thing something else goes wrong. I can't get it right.

The bits that were being crushed when the pouch was down are throbbing now whenever it fills too...not sure if it is related or if it is a totally other problem (ovaries?) 

I am back on NSAIDS 2-3x/day and I still have 12 tramadole that I only take when I can't take it any more and break down...About 2xs/week. 

I never took pain meds before.

So, I guess that this is a noisy pity party. I know that there is nothing that can be done, I won't ask my surgeon for another go at it. I can only keep my pouch as empty as possible and intubate often. This sucks. I thought that I was past this and could live my life freely. 

Crappppp!

Sharon

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Sharon, my heart goes out to you. Please don't give up hope. My body is a lot like yours in that I don't form scar tissue and the sutures and staples just don't hold. My standard ileostomy fell apart as well as the first 3 Koch pouches. They used marlex mesh on the last one, which caused a fistula, but the pouch and valve stayed together (for the most part). I'm terrified of the day I'll need another surgery because I know my body doesn't stay sewed together, just like yours. Please contact your surgeon and let him know what's going on (and how severe it is). Maybe he will confer with others and someone will think of something that has not been tried on you before. Hang in there and, please take care of yourself. Debbie

oh, Sharon,

Only a few days ago you were so kind to reply to a post of mine. You were so nice and funny in your replies. i want to give you a (virtual) hug. 

So sorry this is happening to you. Sounds like your surgery was like you said,"opening a can of worms". I do not think you are crazy, i am sure the usrgeon himself didnt intend for this to happen and i hope you can talk to him and he can do somthing to correct what was done and alleviate your pain. 

Hope things will improve soon and you can go on with living. 

k

Debbie,

Wow, finally someone else (so sorry, I know that it sucks) but I am floored that there is another human being on this site who suffers from the same problem (no glue in their body)...I feel so much hope in the begining, believing that things will work and then suddently they just fall apart...and so does the hope.

How do you handle it...what do you take (any supplements? Collagen? Sillicium?)Does anything help?

I would love some advice from someone else who understands and lives through it. Thanks for telling me, I feel less lonely this way.

K,

I haven't called the surgeon yet...I have to call the radiologist first and book an ultrasound or contrast and I don't have the time. 

Working like crazy...and when I am not I am too tired to crawl into the city.

Don't know what they can say other than Ooops...it unglued. Or unhooked. 

I need to think three steps ahead before I do anything...Whay do I want out of this (no pain!, a functional pouch) and what will I answer if they say that it needs fixing again (No, not again).

Just cut my intake down to chicken, fish and dried fruit and nut and fluids. 

Less in, less out. Less pain. Can't think of anything else to do.

Sharon

 

Ok, so I think that I got it...just not sure how to PM back...

I promise to call my surgeon this week and book an apt for the ultrasound and contrast study. I will also book an apt with my surgeon to discuss the recent events.

Funny but as long as the pouch is completely empty it doesn't hurt as much. I just need to give up food (or go on TPN forever!)...not my view of a great lifestyle choice

The sacroilitis is also wreaking havoc on my knees. I had terrible sciatic pain raidiating down to the outside of my right knee...I must have 'compensated' when walking to the tram and now have pain in my left knee...Could someone tell me how to get this to stop, please?

I took one of my tramadol tonight and am off to bed early (very early, 9:30 pm) so that I can get a good night's sleep. 

It is going to be a long week.

Sharon

Sharon, I forget. Have you seen a rheumatologist about your sacroiliitis and joint pains? I am afraid you are overdoing it with the exercise. You talk about some very heavy duty exercise routines, along with a very active lifestyle. Inflammatory arthritis responds well to stretching and activity, but you cannot overdo, otherwise inflammation worsens. Even if you do everything perfect, flares happen and you just have to slow down and accept them.

 

When I am in a flare, I mostly just muddle through the best I can. I have no idea how to help you with the food issue, though. That serms intolerable!

 

Jan

Jan,

I am barely lifting my poor, aching body off of the sofa this weekend...I have not execised, except for once, since October...my daily routine of going/coming from work or shopping is strenuous enough lately. I can barely make it into my bed at night. I remain standing through my classes because once I sit I cannot seem to stand up again. (do not want the kids seeing me like that)  Idem in the subway...I just lean against the barriers. 

I seem to be flarring badly lately. Knees, elbows and now my wrist.

It feels like my whole body has attacked me, like I am being punished.

I have changed my mattress, no longer wear heels, have orthodic inserts, wear a back pack and pop NSAIDs and lyrica like M&Ms. Nothing helps. I used those anti-inflamatory patches this weekend, not much of a change.

I want to bang my head against the wall. I have never been bedbound like this before. Everything hurts. I miss exercise but every thing that I do seems to make things worse. Like I have tendonitis everywhere.

I don't know what to do anymore. My Rhumy sent me to a Kinestherapute (kind of a PT) who massages and uses heat and deep muscle stimulation but I haven't had the time for since Sept.  I am gainning weight too. No exercise, more food.

I am hoping that if I get off of the carbs (been eating rice again) that maybe the pain will lessen. Any ideas? I am at the end of my rope.

Sharon 

 

Sharon,

I’m sorry for the long delay in getting back to you. I wish that I could offer you some panacea that I have discovered to live with the body I have, but I didn’t even know there was a name for what we have until I read your posts! My surgeon used to blame me for the pouch surgery failures (I was his first failure) until he finally realized that I formed no internal scar tissue at all.  If he hadn’t used the marlex mesh on the last surgery in 1981, I’m pretty sure I wouldn’t have stayed sewed together, just like my prior surgeries.  After reading about Ehlers-Danlos syndrome, I realized that may be the reason my blood vessels break very easily, such as when I grip the steering wheel or grab a shovel. I’ve been taking bioflavonoids for this and it really helps. I also have what I would describe as loose joints (although not double jointed), and as such, I have troubles with my back not holding chiropractic adjustments and other joints giving out very easily. Some years ago I took a supplement that seemed to help, but then it stopped helping so I quit taking it. What things have found to help your various issues? (If only we could find something to help us form scar tissue after surgery!)

 

Maybe you may want to try an elimination diet to help with the aches possibly being caused by your own body attacking you joints/body. When I felt like my body was attacking me and I followed the diet, I got huge relief in just 10 days. (Turns out there’s not much I can eat that I don’t react to, but that’s another story). Hang in there, and please give us an update. Have you contacted your surgeon and scheduled an ultrasound & contrast?

Debbie

Hi Debbie,

It is always a relief to put a name to the problem and not feel like such a klutz or nutcase...I was made to feel that it was my fault for years. People do not understand, especially those who heal quickly and well.

My hubby broke his foot last summer and was casted for 6 weeks. At the 2 week checkup, they discovered that the break was totally consolidated and removed the cast. It would have taken me 3 months!

For my 3rd k pouch surgery my Dr C used Marlex too (or martex, I am not sure)...that is why it held so well for so long...Without realising it, they instictively understood the problem and dealt with it adequately.

Not making scar tissue had its advantages for surgery. My French surgeon can do most of my retouches using laproscopy, something that he could never do if I was filled with scar tissue. On the other hand my scars look like something out of Friday the 13th and stretch out wide and deep. Even plastic surgery scars look scary.

 I am 'double jointed'...meaning that most of my joints bend both ways (not totally but to an alarming degree) and pop out when I least expect it. Like you, I don't hold the adjustments by my Chiro or osteopath...sometimes they just pop back in before I make it off of the table (but feel great for the 2 minutes while he is doing them!)...

My loose joints were undercontrol as long as I did a lot of exercise and weight bearing sports to strengthen the supporting muscle groups but lately (the last couple of years and especially the last months) my ligaments are no longer holding things in. My knees either lock or pop sideways (2 gracillis muscle grafts may have their share of responsibility in that) and are swollen and painful now. 

This Disease is frightening. 

It affects everything. The vessles in my fingers pop when carrying heavy grocery bags (feels like a cigarette burn then 'pops' and turns dark red/blue). My rather amusing cardiologist informed me that my aorta could do the same thing...advantage being that I will never know what hit me!! (he thought it was funny...me, not so much!), ditto for strokes.

My dad has just had another one...he has had over a dozen including 1 full bleed out that left him hemi-plegic. Most of my family members have had shoulder, knee, hip and/or back surgery (or full blown replacement) and are all double jointed. That and colon cancer makes for a happy heredity. Problem with the surgeries is that they do not hold either.

I am holding out for gene therapy, micro surgery and anything else that does not require big opening, sutures or pins. 

What have you been taking that helps? I used glucosamine and condriton for years, then stopped. Now I use collagen, sillicium, B vits along with my normal supplements...plus tons of anti-inflamatories. 

Menopause seems to be making matters worse.

I am in a full flare up and can't seem to get things under control. The back pain is murder and all of my joints hate me.

Any suggestions? I have just cut the carbs out again and am pushing up my protein intake (while hubby was away I loaded up on stress carbs...not a good thing)...maybe that will help.

Tumeric is a dietary constant but nothing seems to be helping anymore.

Will call my various doctors after the Feb vacation (they are all on holiday, not me).

Thanks for writing back.

Take care and stay warm

Sharon

Hi Sharon,

 

I’m only just learning about this disease since you’re the one that named it for me, so I’m afraid I’m not going to be much help to you. The only thing I’m taking for the blood vessles that burst in my fingers is Rutin (a bioflavonoid). Other supplements I take are for general inflammation (lots of Omega 3’s, boswellia), and I really don’t know if they help (just hoping they do and I’m not wasting my money). Do you notice that the collagen and sillicium help?

 

Yes, menopause really screwed me up too. I think it causes us to lose even more of the elasticity in our tissues, and maybe that’s why so many of us have (more) problems after 30+ years with our pouches.

 

Are you getting any relief from your inflammation flareup? Are you making sure to eat good fats (avocados, omega 3’s, etc.) in addition to the proteins?  I wish I could tell you something that would work. Be careful of the NSAIDs – they can end up causing problems too.

 

Hang in there! Things usually get better.

 

Debbie

P.S. I wish I could get the notification feature to work so I would get an email when someone replies to this post. I've checked the box to follow the topic, but I get nothing.

I believe that there is a box to check...no other idea unless you have blocked things unintentionally.

I managed to make only one appointment. My Gyn for next Monday. (everyone else is still on vacation) She can book all of the other appts for me. I tried to get radiology to take me for the exams but they refused without 'coordinated care' meaning going through my GP first. He is on vacation. My PT is on vacation and so is my radiologist. So maybe the GYN can be a good start.

I need bloodwork for liver enzymes. This is the new thing. Pain in my upper right where my galbaldder used to be. I take a load of NSAIDs and have for years so these sharp and persistent pains could be my liver telling me that I have to stop taking them.

I don't look forward to it...no idea what I will be able to take to replace them. Tylenol doesn't do anything for the inflamation. I can't take codine or most other opiates because they slow me down too much and I have had occlusions so it is contra-indicatory.

If they take away the NSAIDs I am in big trouble.

I think that the silicium worked well especially for post op healing. The collagene is sort of counter balancing the menopause. I am not as bad as I thought that I would be thanks to it but I am very bad as compared to normal people.

Still looking for my miracle. Haven't found it yet. Gene therapy? Would it work for us? Is it too late?

No answers but will keep looking.

Take care

Sharon

Hi Sharon,

 

i just read your new post. I think its good your GYN can schedule the appointments for you , showing "coordinated care". How come they are all on vacation? whats going on? its not Christmas, not vacance. Carnival maybe?

 

As far as i know, and if anyone wants to correct me they're welcome, Tylenol can cause more liver damage than can advil/NSAIDs, but more GI bleeding. it is probably a good idea to do chemistry which will include liver enzymes and other "good stuff" and maybe it will provide a hint as to whats going on.

In additon, wondering about seeking a second opinion in a place like CC or Mayo. My mother had a friend who does not live in the USA and had people at Mayo look at her medical records. however, for that you would probably want to have all the blood, radiology and other tests done and for that all these MDs need to come back from their vacance...

 

 

 

thinking about you...

 

 

Kari,

In France they have 2 weeks off every 6 weeks....so this is Mid-winter break (somewhere between the middle and end of Feb...in the fall they have 2 weeks from the begining to mid Nov then the requisite Xmas break...its a tough life but someone has to do it

In May they have 3 long weekends (poor babies) so they are not over tired for their summer vacations...I work for private schools who do not give the kids their usual vacations so I don't get the time off...Most other people do (they have over 6 weeks off annually here) so when they have kids in the schools system even the doctors take the time off.  Which means that you should really not get sick during those periods...add to that the strikes and you are pretty much out of luck unless you plan you appts and illnesses 3 months in advance. 

Hopefully my Gyn can do it all and get the ball rolling. It does not help that my lack of activitiy is adding to my weight and lethargy...vicious circle...gain weight, walk less, hurt more, gain more...

The ice seems to be doing more good than the anti-inflamatories...I have started using it on the sciatic nerve and it works too. I may end up taking ice-baths if this continues! 

I keep telling myself that I have 6 really bad weeks to go before I get some time off to rest up...keeping my fingers crossed that the pain will deminish with the warmth of spring.

Hope that you are doing ok 

Sharon

 

There are a lot more than 3 boxes to check or uncheck in notifications. You are probably looking at "settings", which only has 3 notification boxes for following. Those do not set the email notifications. Those notifications are just the alerts at the top of the page. Once you get to that screen, look to the left, and you will see "notifications" in the list. Click on that and you will see your full list and you can see if email notifications for dialogs is checked. I would suspect not, since you are not getting emails.

 

You can also get to the notifications page by clicking on Manage- Account- Notifications, from the menu bar above.

 

Jan

Last edited by Jan Dollar

Thanks Gin,

I am sooooo tired. Exhausted. Melted into a puddle of tired. Working crazy hours, correcting exams and writing new ones...everything hurts. (am sitting with an ice pack on my knee that I will put under my sicatic in 5 mins to try to ease that pain then the elbow...am running out of Ice packs!)

Where did my energy go? Last night I was so cold that I shivered all night long (sign of extreme fatigue in me)...can't seem to catch up on the energy level...taking vitamins but obviously not enough. My finger tips hurt and are cracking open into crevaces, another huge sign of deficiencies with me but I don't know what I am deficient in.

I see my surgeon tomorrow evening and will beg him for bloodwork. 

I feel anemic. Funny enough I am not sick. I am just energy deficient. I eat well now, loads of fruits and veggies, a bit of meat and fish but right now I need my spring treatment (every year I would do a  month vitamin treatment to up all of my numbers after a very long winter)

I need a vacation!!!! (won't get a day off for another  2 months, then the finals sprint and I am done for the year...I am litterally drooling at the idea of not having to get up for work.

Anyone invites me out and I will hit them. 

This too will pass but for now I am too tired to imagine a day when I don't hurt or feel exhausted.

How are you doing? How is the recovery going? Are you feeling any better?

Hope so.

Spring is almost here...we just have to last until then

hugs

Sharon

Sharon, you are a better woman than me. I was just working part time the past ten years, and the last year was difficult, even part time. Since my husband and I retired last year, life has been so much easier. Plenty to do, but we do it at our own pace and time. It is so nice to be able to slow down when needed without putting others in a bind.

 

Jan

Last edited by Jan Dollar

I just got back from my bachelor students' commencement ceremony tonight...I haven't had such a good cry in ages!

When I am so exhausted that I could weep, when my pouch aches, my back hurts and I can barely sit and I wonder if life wouldn't be better if I could just stay in bed forever...I think about my students...these kids are fantastic! 

I got hugs and kisses from 50 kids and their parents...they are why I get up in the morning and fight my body every single inch of the way to make it to work.

They are worth it all!

We all need a reason to keep fighting the good fight...they are mine.

Sharon

I hear you about the students, and I am glad that you received much love yesterday! We all need that.

 

Have you seen the surgeon? Did he/she agree to blood work? I truly hope you start to feel better soon. Now that the graduation has happened can you rest or do you still have classes and grading to do for other students?

 

Gin

Graduations was last year's students (they have to submit a thesis and have it accepted in order to graduate)...some are already in my Master's classes but many have moved on in their lives so it was very emotional (we are such a tiny little school and get to know those kids well).

No one wants to order blood work. I now need to see my family doctor for that and he is un-seeable presently. So it will have to wait. 

I am frozen today. Litterally. Didn't sleep all night, went from frozen to sweating to frozen all night long...been trailing my butt all morning and everything hurts! Really hurts. 

I am frozen again. Took a nap under a huge blanket and still can't warm up...must be more tired than I thought. 

Making dinner for the clan. As soon as the cooking is over I am going to boil myself in a bath.

I tried to submit a response to your post but my computer ate it. Will try again later. 

 

Off to the kitchen.

Sharon

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