Well, it always seems to be something! I was putting in my suppository this morning...well, actually, I wasn't, b/c "it" was almost completely closed up. I hadn't been using the restroom well all weekend and it was painful...blood on the toilet paper. So, sure enough, major stricture. I have taken to dilating myself, which may not be a good idea, but my surgeon has told me how to do it. Anyway, it hurt pretty badly and bled quite a bit, so I emailed my surgeon and am awaiting instructions. I mostly just wanted to say "UGGH!" to people who would understand.
So. Thanks
Liz

Liz: I understand completely.

My stricture is so bad that I have it dialated under anestesia every 3 months. I tried to do it at home but it was awful and it's too painful even in the doctor's office.

Sounds like we have the same medical situation as well, UC then pouch then Crohns. I never had any Crohns systems until after I had the J-pouch.

Good luck,
Pam

Hello,

I was wondering if you could explain the home dilation? I too get dilated under anesthesia every 5 months. My surgeon never mentioned home dilations.

Kristen

Thanks, Pam! Yes...I suspect I may be due for yet another surgical dilation...Oh well, I don't mind it so much. You get knocked out at least!
Kristen, basically this is the do-it-yourself version of the digital dilation your surgeon does in the office. It hurts like hell and is probably not recommended, but it's been a constant problem, and I have told my surgeon I kind of try to "stretch things out" myself from time to time. I have to do the suppositories twice a day, so I spend a lot of time with my hand up my ass anyway. ha. So when things are getting tight I just try to kind of stretch the opening with my finger. I've had it done so much in the office, I can just tell how he does it. Kind of presses against the wall and holds it for a second then moves around the circle. I wouldn't advise you to try this without having your doc's okay. They do make dilating tools too, apparently. It was just so unbelievably tight this morning and I have never bled like that afterwards. Ugh!!!!
Pam, sorry to hear we are in the same boat here. How are you managing your Crohn's? I take Humira and it's the only thing that has ever helped me.

Hi Liz, Sorry to hear about this weeks problem! I have an annoying stricture as well. I was dilated at takedown, and then 7 wks after that I was dilated again - at that point it was so tight I was almost totally obstructed. I was dilated for a 3rd time one month later. I also use suppositories at night, and it's an easy indication that you're getting tight when the suppository is hard to get in! I have an appt with my surgeon tomorrow so I will probably being getting dilated for a 4th time in the next week or so - I think he wants to do it a few times close together so it doesn't tighten up to much and then I'll get the take-home tools too. I tried the finger technique but it's seemed really ackward for me. Also, I find it hard to stay relaxed enough to be effective when it hurts!! I think my surgeon plans on giving me a cervical dilator to use at home, he thinks they're the easiest to use.
I hear your "UUGH" and am chiming in with one of my own
Let us know what your surgeon says.

Hi Lizz,

Hope things get better soon. I know how frustrating strictures can be!!

For some temporary relief, have you considered taking stool softener, such as ducolex to makes things pass through easier. Ask your doc about that. It feels so lousy not being able to empty properly.

I have had 4 surgical dilations in 2007. I now dilate myself once a day to keep things open after a dilation. While in the bathroom, I take a rubber glove with lots of lubracant and insert my index finger as far as I can. My doc said I should not be afraid to insert where it feels "too far" for me, as otherwise it might not be too effective. It does seem to work as it is not painful for me. It is not the most comfortable thing to do, but it is nothing like a dilation by your surgeon without sedation. The purpose is to maintain an opening, not to open.

Are strictures necessarly a sign of crohn's disease?

Dilations without sedation sounds really scary! My surgeon does the dilation in the OR. It is somewhat annoying because I have to go to admitting in the hospital as if I am having a major surgery two hours before and go through that fun process. He usually takes about an hour. My gastro doc told me that he couldnt do it in his office and my surgeon has done it since my first surgery.
I agree that it is very unpleasant to not be able to empty!
NY-pouch, I dont have crohns I had UC. Although, I had an infection after the pouch surgery. It created an abscess that pushed the pouch away from the rectum. I have been told that I have a lot of scar tissue in that area. Not sure if that is the sole reason for my stricture but I think in general it is not terribly uncommon among jpouchers.

Kristen

People with CD certainly get stenosis (strictures), but I wouldn't freak over it just b/c you have one. It can just be a complication of the surgery. If you have no other signs, you're prob. fine
Yes, doing it at home is not fun, but I try to do it as more of a maintence thing, but this morning it had to be done or I had to skip work, drive 3 hours to try to get into my surgeon..etc. So I just went for it. I'm sore, it bled, but it could be worse.
I got a response from my surgeon and he thinks my pouch is twisting, that it's not a stricture. It twisted this summer and I had to have emergency surgery to fix it. (I have the most random, freaky things happen to me you guys!) But no probs with that since then. This is def. NOT that. I could not go to the bathroom AT ALL when it twisted and it was excruciating pain. Like having a total blockage. This is just TIGHT and painful. Totally different feeling. So I went into much more detail again to assure him I do not believe it is twisting, just the good ole stricture come to town!
And again, I reiterate my UGGH!!!!
Thanks guys!

I am sitting here in excruciating pain as I type . . . stricture + fissure = torture! My doctor has me self-dilating with stainless steel dilators, and I am also using diltiazem-lidocaine ointment to relax the stricture. But somehow it seems all the progress I just made was undone by something I have eaten that is causing anal irritation (probably a spice hidden in an Italian dish!) . . . which led to the fissure being aggravated again! It hurts so bad that I can not sit, stand, sleep, or find any comfort until the pain passes, which usually takes 4-7 hours! I take vicodin and use medical marijuana for pain control . . . and today am once again having severe break-through pain.

Will a pain clinic help, or will they just want to get me off pain meds?

What do you all do when the pain is this bad?


I, too, am a U/C, colectomy,
three stage j-pouch,
then Crohn's diagnosis.
I had three remicade infusions before take-down because of fistula-like growths in my pouch.
My final takedown was 4/2003.
I did poorly with a stoma, so keeping the pouch is our goal.

Deb, if you have chronic pain, a pain clinic is a good idea. They do not try to treat the underlying cause (that's for your other doctors to do). They treat your pain specifically, finding the best options for you and your specific type of pain. They treat for the long term. And, when you are ready to come off of the drugs, they are also there to help you detox without withdrawals. You sign a contract agreeing to take only the doses prescribed and to keep in touch with how you are doing. You should get pain meds only from them (I think it is also in the contract) so they can keep tabs on what is going into your body.

So, no, pain management clinics are not about getting you off pain medication.

Jan

Hey Debra,

Ouch! I am sorry you are in so much pain. I too have fissures. I find that when they get really bad I use a combination of ilex and calmoseptine. I actually use this stuff everyday. They always come back but I find that this makes it tolerable.

I use a q-tip to get the fissures that are just inside the rectum. the calmoseptine really helps when they hurt. then i apply ilex with an extra layer of calmoseptine over it. Wow this company has made some serious money off of me. I should work for them.

Good luck to both of you!

Kristen

Aloe gel with lidocaine...Prep H. gel, just b/c it is somewhat soothing...Any diaper rash creme. They all sort of help. I use a qtip to apply too. I think just being as gentle as you can be in general is about all you can do other than pain meds.
Deb, my goal is to keep the pouch too. I don't want to have any more surgeries unless I absolutely have to, and I hated the bag, so Jpouch preservation is what I'm going for. I just wish our bodies would give us a !&^# break for a few months at least, you know? It seems like it's always something...and fairly often. I pray we all get a break SOON!

Jan, thanks. I used to be a worker's comp examiner, and we used pain clinics to prevent abuse. However, I hope that I can find a combination that works for me. Do you know if they can handle more than one kind and source of pain at a time? I have my fissure pain and then I have my extremity/neuropathy pain . . . and when I have both going wild at the same time, I am intensely unhappy!

The acute onset when one of the fissures gets irritated is truly the worst pain I know of . . . and getting rid of it often means I get to be really loopy for a while. The cannabis helps me to get calmed and relaxed enough to be able to breathe again, as I tend to hold my breath when I am in extreme pain: nothing else works as good or as fast. Thank goodness my gastro agreed to its use.

kriliz . . . I used to use calmoseptine when all I was dealing with was excoriated skin, and I could not tolerate its stinging then. I haven't used Ilex on my bum since I had issues removing it once and made my problem worse!!! I use lidocaine and pramoxine for topical pain. But my real issue is the HBP and tension headaches I get from not being able to relax to breathe when the pain starts. I have been working on methods to arrest that response and replace it with deep breathing for some time now.

It doesn't help that so many foods irritate upon exiting the body that I have to be super cautious about what I eat. I am so tired of eating the worst diet in the world just so my rear end can have a moment or two of peace! My surgeon says I am the only one in their practice with this combination of issues, and he is really working at trying to help me keep my j-pouch because of how miserably I did with my iliostomy. So far (knock on real wood) my issues are not with pouchitis, but with the whole stricture/sphincter-spasm/fissure thing.

I need to get this under control, as I fly back home (Seattle to Iowa) in March to see my ailing mom. And this summer I hope to take a plein air pastels workshop with one of the greats . . . but can't even fathom doing that if I am like this!

Debra,

I am so sorry you are going through all of this. My only advice is to hang in there and know that you have the site for support! I hope that the doctors help to alleviate the pain.

I too have been overwhelmed with medical problems at times. The doctors arent always great to alleviate the medical problems but it would be nice to be able to easily find a psychologist that understands medical problems and would help with emotional aspect of dealing with them. I have always looked for therapist and they never understand (although this site is loaded with them )
I am in school getting my degree to become a clinical psychologist and when I finish I am going to start a practice working with people like us and a link we can find someone in are area!
I hope everything works out. Let us know how you make out.

Kristen