In hospital for reversal surgery!

Sending healing thoughts...

Good luck Sally 

Best of wishes Sally...let it go smoothly and be over!

Sharon

Hi guys thank you so much for the healing thoughts and well wishes, I had surgery on Thursday and came out of recovery at 6pm I was being very sick they think due to the anesthetic, I was moved to my room on Thursday night and have been there since, I didn't eat anything on Thursday night but around Friday lunch time they told me to have mash potatoe which I had for lunch and dinner, I didn't have a bowel movement until the early hours of this morning (I'm in England time now is 3.40am, had a bowel movement about 3 hours ago and one just now) no urgency so far just I fell I need to go no leakages so far either fingers crossed, I think I am getting some irritation around the anus but so far it's manageable. My surgeon said I should be discharged this Monday and that the surgery went well and everything looked ok, I can't stand up straight it's still very painful to do that, they didn't give me nearly as much pain relief this time compared to the step 2 I was on a motphine pump then so this time the pain felt worse to me so hey ho so far so good, they spoken to me about azathiaprine due to pyoderma and erythema but nothing will be starting right now, love and hugs xxxxxxxxx

I forgot to say I feel really bloated at the moment and have passed some explosive wind on the toilet all I've been told is normal, i still feel very bloated and tummy hurts to touch, especially around the previous stoma site and all the way around the ouside of the tummy xxxxx

I had erythema nodosum on my shins when I had colitis. It's an extra-intestinal manifestation of inflammation. They didn't treat it--it will just go away on its own. Painful, though. 

Thanks elisa, great news that it went away in its own! I really hope it does for me to, my concern is that they had already taken the colon out and created the j pouch and then I got the erythema on my right shin, right before takedown, so the nurse was bamboozled because she 'you shouldn't be getting that now we've taken your colon out!' do u think it could still go it's own?

Yes, they will go down on their own. When I first saw a dermatologist about them she said they were "self-limiting," even before she made the connection to the UC. Maybe you have lingering inflammation--I did for awhile even after my colectomy. My white blood cell count remained elevated until after my takedown. My surgeon said it's not unheard of. It's down now, about 3.5 months after takedown. 

 

Good luck with your recovery! I've been doing great--the surgery has given me back my life. Hope it does yours too. 

Hi elisa, thank you so so much for your reply so ressauring to hear that, gives me the hope I needed! Thank you!! xxxx

Hi Sally, I am so glad your J-pouch surgery went well. I had bloating, too. I blew up like a beach ball and then sat on the toilet and passed the longest gas ever. I learned early on that cooked tomatoes were to be avoided. I can eat them now with no problem (4 years later...I just tried them). I hope you stay on a good path to healing and learning to live with the J-pouch. You will certainly find lots of support and information here!

Thanks RHolt! That bloated feeling doesn't want to leave me I feel pregnant again! I've been to empty my bowels about 10 times today and although I don't get to much urgency when I'm on the toilet I feel I need to pass more but nothing comes out :/ also it's a bit painful on the tummy when I pass anything, and I'm only passing water and a little bit of very very watery porridge like stuff, is this all normal?

 

 

Thanks RHolt I'll try that now I hope I get the gas out soon it's so painful whatever's going on, I'm passing gas just a little bit here and there on the loo, and I've started to feel sickly :/ I'm hoping this is all normal! Xxx

Oh I forgot to say I'm getting horribly painful cramping comes and goes is this normal to?

I've been up every hour like clockwork all night going to the loo, I think I've been about 20+times in 24hours is this normal?? I feel drained, also before I was connected I had a poughoscopy and they found inflammation in my mouth (they were querying diversion colitis) could this be pouchitis or something else instead because I'm going to the loo like a crazy woman!

I'm being discharged today, had a rough night went to the loo every hour but they said that's normal not passing anything stool like just water and sometimes a tiny bit of watery porridge, I've got some urgency and when I sit on the loo I feel like I need to passbsormthing but there's no more to come out! Not a nice feeling has to be said, any help with bloating?? And gas, I've heard about Beno, is this good or anything else anyone's used successfully??

Thanks in advance guys xxxx

 

Thanks NancyJo! My goodness sounds like you had such a tough time, I hope everything is ok with you now and continues to get better and better yep I'm definitely having bowel movements more so at night, thanks for the food pointers to I might try more rice to bulk things up and will definently ask my doctor about Metamucil xxxx

Hi guys, I'm feeling awful at the moment I've been to the toilet 26 times in the last 22 hours is this normal?? My reversal surgery was last week Thursday, and any ideas how I can and if I should thicken things up with what I eat?

Thanx in advance guys xxx

Check with your doctor, but the usual means for thickening things up are: metamucil mixed to a paste consistency and eaten; white rice; and/or white bread. You could also eat smooth (creamy) peanut butter on saltine crackers. The usual means for slowing things down are: immodium, lomotil, no food (gut rest). For a sore bottom, try Calmoseptine ointment. That is my go-to product!  Good luck and check back in. 

People can choke on Metmucil mixed with so little water. I get a perfectly satisfactory result following the package directions, and it's worked well that way since the day I got home from the hospital.

Thanks so much for your help RHolt and Scott, I think I'll definently give Metamucil a go, sounds like I could get some relief, do you know if smooth almond butter on crackers would thicken things up to as I have a very mild allergy to peanuts and develop a wheeze and sometimes a cough and coughing hurts so bad at the moment!!

I've also got tiny bits of blood in my stools is this normal I had bleeding from the rectum with my end and loop ileostomys for as long as I had them so I've become used the bleeding but really don't want to become used to it now as well.

I also had some pyoderma around the stoma which the surgeon seems to have stapled closed along with the stoma opening but ice just woken up (it's 6.08am London time) and the bandage was wet, there's some puss and bleeding coming from one end of the staples it looks like the pyoderma is coming up through the staples, and it's really painful I've also got a patch of erythema on my right shin I  thought the pyoderma and erythema disordered when the the diseased colon is taken out??

Thanks for for the help and support guys xxxxx

Hi Sally,

 

Yes, you can try almond butter. I like it better than peanut butter, so that's what I usually have. The erythema take awhile to go away. Pus out of your incision sounds more serious though--you should check with your doctor. My surgeon left my incision open to air so it would heal. As for the bleeding, it could be post-surgical, but it could also be cuffitis! an inflammation of your remaining rectal cuff. I had cuffitis soon after my takedown surgery and my surgeon prescribed hydrocortisone suppositories and Pentasa. It sounds like you might still have some inflammation. It would explain the pain too. 

 

I had pretty severe pain at first after my takedown too, though not the frequency you're having. The gas would feel like it was just ripping through the pouch. But it got much better, so hang in there!

Here's what I found out about peanut allergy and almonds: "Based on recent studies, an estimated 25-40 percent of people who have peanut allergy also are allergic to tree nuts. In addition, peanuts and tree nuts often come into contact with one another during manufacturing and serving processes.  For these reasons, allergists usually tell their patients with peanut allergy to avoid tree nuts as well."

 

Your peanut allergy is mild, so you can do whatever experiment suits you. Almonds wouldn't be my first choice as a thickener for you, though.

 

Metamucil (psyllium) has worked well for me for years. Some people get gassy from psyllium, though, and may do better with Cirucel or Benefiber. Some people prefer original Konsyl for psyllium, which leaves out the flavorings and sweeteners.

Thanks so much elisa, I've been told I've got inflammation in the pouch already before they did the reversal I asked if they could give me antibiotics then but they said it could be diversion colitis and not pouchitis, could this to cause bleeding?
Thanks Scott, I had no idea about the nuts! Thanks so much for the info, I've ordered some psyllium husk the unflavoured one fingers crossed it will help

Also I wanted to ask when I go to the toilet and the pressure is crazy and yep the gas pain feels like it could rip the pouch, when I empty the pouch just a little comes out then I have to strain like crazy because I feel I need to empty the pouch some more but it's really strange I almost have to physically separate the anus slightly sorry for this detail and then after a little more straining something come out :/ any ideas what this could be? Or is it normal? Could it be a stricture?

Thanks in advance xxx

Hey Sally---it sounds like you are having a harder adjustment time than I did. I am concerned about your bleeding and your (excuse me for being so blunt) tight anus. I certainly don't remember struggling that much or having to push that much to get things out. Maybe it is time you call your surgeon and have him or her take a look. One thing I have learned is not to wait too long before being seen. It's just not worth the extra suffering.  If things don't calm down for you soon, you may want to call for your surgeon to see you. He or she may not be able to see you right away, but then at least you will have an appointment on the books and you can always cancel it if you feel better. 

 

Yes, diversion colitis can cause bleeding. I think I had it too at one point. Hopefully if that's what it is it will clear up soon. 

 

I think it's not a good idea to strain, as it can damage the pouch. But do experiment with different positions to expel what you need! I find that standing up in between pushes and bending forward to touch my toes helps get things moving, solid or gas. 

I can't really say this is normal, as we are not "normal." However, early in the adaptation period, and even ongoing for some of us, this can be a typical issue. It is possible that you have a stricture, but I would expect that your surgeon checked for this at the time of the ileostomy take-down. More likely, it is just trapped gas due to your gut not being totally settled down, some spasms in your sphincters, or perhaps adhesions. This should improve with time, but I still have this issue even 20 years out. But, it is not every day, but mostly when there is truly excessive gas going on.

 

Jan

I agree with Renee that it might be time to see your surgeon. Do you have a post-op appointment scheduled? I did soon after my surgery and was glad I did--it's so hard to know whether it's normal recovery pain or if something else is going on. I think post-surgery strictures are common. 

Thank you RHolt, Elisa and Jan for your help, and so quick to! The straining is causing me the most difficulty it's awful I literally have to shout as I empty the pouch I called my nurse today and told her and she said this all the adjustment period but I explained to her that the pain was really quite severe I'm almost in tears on the loo everytime she said it will settle, that being said the surgeon said they had a look at the bottom and all looked fine but the nurse who see me just before I was discharged said their was a slight narrowing but nothing at all to worry about :/ if it is a stricture can they resolve it easily?
Elisa, my post op appointment is in 6 weeks if I remember correctly the first week of December, I'm worried about straining like this for so long, but the nurses keep telling me it's just a phase, feels like something that isn't going to go away

Thanks guys xxxxx

No, straining is not good, especially if you are straining severely. Are you having pain in the anal canal? If so, you may have a fissure (a tear in the skin of the anal canal), which is extremely painful and causes severe spasms of the sphincter. Straining causes them.

 

Try taking hot baths to calm things down in your butt. If this does not turn around soon, call for an earlier appointment, if only for your peace of mind. You may need an antispasmodic until you get past this crazy period of adjustment.

 

Jan

Thanks Jan, yep there is a pain in the anal canal sometimes a sharp pain that goes quickly but makes me stop in my tracks and most of the time a burning sensation, the antispasmodic sounds like a great idea, I think I'm future I'll call the ward itself and not the nurses they really don't take anything I say seriously

Also i was told my sphincter muscles are in the normal range but the low end of normal, and although I haven't had any leaks I have to go to the loo pretty much straight away with great pressure but when I get to the loo I have to strain to get it out! I'm confused, when I make my way to the loo I can't even pull my sphincter muscles together so how am j not leaking? Could a stricture mean it's making it tight and so I'm not leaking? And if so if they dialate could it cause leaking? Or are these separate things?

Sorry for so many questions I just never get any answers from my hospital, every piece of good advice has always been from this site

Thanks in advance xxxx

If you have a fissure, and you may well have one, the pain itself causes spasms of the sphincters and you are unable to relax them to evacuate. Hot soaks in the tub can help with this while you wait to be seen by your doctor. 

 

Jan

Thanks jan! I'll give the hot baths a try, even when I'm resting the sphincter muscles just feel like they are pushing downward if that makes sense, like pushing the muscles with so much constant pressure like I should be sitting on the toilet to empty my pouch if you get my drift, I'll call my doctor to and get seen earlier, thanks again for all the help guys cxxxxx

I hope your doctor can see you soon, but mostly that your body gets adjusted so you can have some peace and get on the right track soon! We are thinking of you.

maybe it is too soon to consider this option, but I got relief from similar symptoms w pelvic floor PT. 

Thanks renee i really hope so to, thanks JLH I've been trying to do pelvic floor as much as possible really keeping my fingers crossed it will help, sometimes when I do the exercises I feel like I need to run to the loo but I'm sticking in there

Thanks for the help guys really appreciate it  
Sally xxxxx

sally

i too was in a bad place with loss of control.  it is simply miserable and i am so sorry that you are going through this.  pt really made the difference and then i practiced at home.

 

the PT vs. home exercises is helpful as you get hooked up to a bio-feed back machine, rather a program on the computer and the visualization helped me focus the muscles to relax/tighten as needed.  i'm not proud of this, but i went through three PTs prior to getting one that really knew her stuff and was willing to stick it out with me.  she was easier to deal with from the get go because she did not have a phony toilet in the room on which one was suppose to sit.  i refused in the other office.  there is a matter of dignity involved.

 

another thing, although this might be getting into tmi.  the ordering doc required that i get some tests prior to issuing the PT script.  the test were miserable, and the pt never even looked at them because the nurse didn't fax them over or some bizarre reason.  i ended up with an abrasion from one of the probes, which has only slightly healed and/or the scar tissue opens up.  episodically it causes me mucho pain.  i would suggest no need for the tests--the PTs don't need them.  if you are near boston i can suggest a good provider.  check out how much experience they have and whether they are familiar with j pouch prior to signing up.  it is a very complex field.

 

one more thing.  the PT had me develop my core muscles and she claims that is one of the biggest problems with pelvic floor dysfunction.  so that is something you can work on at home.  what sort of condition are your core muscles in?  do you do pilates?  good luck and keep me posted. janet