Chrons disease with pouch

Perianal Crohn's can be the worst! All those sensory nerves are in or near the anal canal. You might try asking for a topical anesthetic like lidocaine to help with the pain. It does not help heal, but might save your sanity. Oral pain meds just do not work on this pain. Another possible help is Belladonna and Opium (also known as B&O) suppositories, but they don't have the instant relief of lidocaine and can be difficult to get.

 

If Crohn's is the diagnosis now, have they discussed putting you on more aggressive  medical treatment (like methotrexate and/or biologics)?

 

Jan

Thank you for the reply Jan, lidocaine cream sounds like a good idea. not sure about the availability of b&o in the UK. yes my surgeon briefly mentioned the chrons meds, i have an appointment in 2 weeks with him where he will be able to tell me the results of the biopsy to confirm. I wonder what the suggested treatment is if it is not caused by chrons? 

 

I am also worried that my anal canal will be too far gone, what happens to my healthy pouch then?

 

Some of these questions i should have asked him at the hospital!

Thank you for the reply Jeane, I will indeed keep this thread updated especially after your reply. I am sorry that we are both having to go through this, but knowing somebody is having similar problems to me is also slightly comforting

Im right there with you guys.  I had my takedown 15 months ago and ever since 3 weeks past takedown I have experienced chronic rectal pain/bleeding from cuffitis and fissures.  Nothing seems to be working, including methotrexate and once a week humira injections.  My doctor has also diagnosed me with Chron's.  My next step in to try Entyvio.  

Seems there are not many of us in this boat. I will update after my consult with surgeon.  My GI was optimistically hopeful, but I believe I have been depressed over the last year or longer fighting this.  I spent close to 10000 each year over the last few years for repeat scopes, biopsies and treatments for this ongoing issue.

I'm sorry for your pain. Please know that you are not alone. I too was diagnosed with UC at 18 years old. I had several surgeries then the pouch in 2002. 12 years later I found I have Crohn's. The pain and loss of sleep is just terrible! My Dr put me on remicade infusions. It's been about 10 months but it does seem to help. I need to go for infusions every 4 weeks without fail or the symptoms come back. My oncologist and gastro dr told me to give it two years. I have the pouch checked every year and always have severe pouchitice. Hoping the treatments help in the long run. If you ever need to talk, always feel free. Good luck to you...

Hey guys, well I ended up being admitted to the hospital friday evening, i started passing lots of blood and the pain became unbearable. I am now on combination of IV antibiotics (cephredine/metranidozole) and IV hydrocortisone, the bleeding has stopped but the pain is still very painful! the lidocaine gel helps somewhat. Im waiting for my consultant to assess me on monday and for an MRI scan. I will keep you all updated with my progress and experience, hopefully by going through this we can help eachother out

Sorry to hear this. Sounds like you needed the "big guns" to address this serious flare. Hope they find the best solution to keep you in remission. This sounds pretty awful!

 

Jan

I'm so sorry!

 

I had my jpouch for uc, but then my diagnosis was changed to Crohn's later.  What seemed like never ending cuffitis finally got called "Crohn's of the cuff" because there just wasn't any healthy lining left.  My pouch actually looked fine.

 

I did Remicade which helped for a while.  Diet also helped, too (SCD/Gaps).  Ultimately I ended up with a permanent ileostomy because I ran out of options to help treat it.

 

I totally understand your feelings of defeat.  Hang in there!

Laura

I was diagnosed with Crohn's this year too. I've had my pouch for 11 years. I've been in and out of the hospital as well as having to have surgery again (small bowel obstruction), the only thing that has worked for me long term has been Humira. I've been on it 3 months now and I'm still not symptom free it has kept me out of the hospital. Good luck.

I am very sorry to hear of others issues as well. I think they are finding out that surgery is not always a total cure for UC for those having jpouch surgery ( or what was originally diagnosed as UC ). After four years with  my ongoing issues I'm pretty certain I will be facing surgery unless biologics are offered to me. I have pretty much exhausted all existing treatments other than prednisone again. I understand the frustration of hoping for better health after surgery and the disappointment of not obtaining it. Thank you to everyone contributing to this topic. Many days I felt very alone with my symptoms. I hope those still fighting find options that will
help them.

Saw my surgeon today and he is going to scope my pouch an anal canal on Tuesday to see what shape everything is in. I am being plagued with multiple fissures that are so painful all I can do is cry.I use the nitroglycerin ointment twice a day but continue to have 15+ PAINFUL bms daily. The warm baths help temporarily and so does the recticare ointment. How does one go about getting some stronger type of numbing agent to dull the pain? Judy K

I am so sorry to hear of the problems everyone's having. I am new here and not posted anything before. I had takedown 10 weeks ago, am still having 20+ BMs per day, taking codeine, loperamide, ciprofloxacin, have a fissure. However the worst thing are the constant spasms in the pouch, the pain is unbearable, and the fact I am still unable to sit due to the terrible pressure in the pouch when I do. Has anyone else experienced this? I had a constantly proclaiming ileostomy for 15 years and it feels as if the pouch is trying to prolapse. Any help will be wonderful as am feeling at wits end

ooops darn predictive text!! Meant prolapsimg stoma not 'proclaiming' - though that may be more fun!!!

Hermione-

Some people find antispasmodics (e.g. Levsin or Bentyl) helpful, especially early on, though the side effects can be a nuisance. Have you discussed that with your doctor?

Hi Scott, thank you so much for your reply. I had been taking Buscapan 20mg 3x day for 9 weeks but made no difference at all and surgeon said to stop them as he felt anti spasmodics will make no difference. The spamming gets worse the more I do, am having another pouchagram on the 11th Nov.

A fissure can also cause spasms, and they are miserable. Have you been treating it? Options include sitz baths, nitroglycerine, nifedipine, and botox injections. Does your doc have a theory about the spasms?

 

I sure hope it's not a prolapse. The only way I know to treat prolapse is with more surgery, preferably (IMO) by a different surgeon than the one that failed to secure the pouch adequately. Does your doc have an opinion about your prolapse concern? A defecogram is generally the best way to diagnose a prolapse, though you really have to let go of ordinary notions of privacy for that test.

 

You need to manage the stool consistency carefully when you have a fissure, and keep it from getting too firm or too liquid. All of the meds you're on can thicken the stool, so you have to pay attention to the "end result." The Cipro you're on suggests that your doc suspects pouchitis, but if it didn't help in a few days after starting it then it's probably worth trying a different antibiotic, like Flagyl. Any antibiotic can thicken things up. If, OTOH, you're producing liquid, a *small* amount of soluble fiber (Metamucil, Citrucel, Benefiber, whatever) may help.

 

Good luck!

I was diagnosed with UC and after multiple episodes in the hospital and flares too numerous to count, they decided the best thing for me was to remove my entire colon  and leave the cuff and give me a j pouch.  Following j pouch surgery, I had fistulas, surgery for fistulas, changes in medications, and more surgeries before they diagnosed me with Crohn's.  So I have a j pouch and am on Remicaide, moxifloxican and canasa and I've changed my diet radically to work for my body.  I'm always the same weigh within a couple of pounds and I've cut stress out of my life to a great degree. 

 

I am hoping nothing else happens to my j pouch, or intestines.  By removing many of my organs I was put in a medical menopause and have come out of that just fine.  My pouch operates well if I take Miralax twice a day - morning and night and keep myself on a disciplined regiment.

 

I would like to know how long my j pouch will last - nobody seems to know that answer and I don't want to go through that again - first 4 years were unbelievably tough. It will be 10 years next Feb. (2016).

I am not sure that anybody can answer your question. Your pouch is made out of your own intestines which were meant to last a lifetime.

Mine is 36yrs old (had it done in 79)...no reason why it should last forever.

I am hoping that it will last at least as long as I do !

Sharon

Laurie-

Chohn's is unpredictable. It honestly best not to try. It can stay quiet for a very long time - I have a friend who had a rough time with Crohn's 30 years ago, requiring surgery, and hasn't had a symptom since. If you're doing well now just enjoy that. Your pouch may indeed last you a lifetime, but it came with no guarantee.

Thanks Scott - take care!