Several pouchoscopies have indicated I don't have pouchitis, but I sufer continually from pain, cramps, and spasms that have me writhing in pain for hours. Narcotics are the only thing that works, and that is not a long term solution. Anyone lese having pouchitis-like symptoms but no pouchitis?
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There are a few things it could be:
IPS (irritable pouch syndrome)- similar to IBS, a functional bowel disorder. Treatment is the same: diet, antispasmodics and low dose antidepressants.
Small Bowel Bacterial Overgrowth- treated the same as prouchitis, with antibiotics and probiotics for maintenance. There just is no evidence of pouch inflammation.
Nerve damage or trauma: the nerves in the area of pain were traumatized by surgery or became entrapped in scar tissue, and never recovered. After a year or so, if it has not improved, the damage is considere permanent. Treatment is pain medications, nerve targeted medications (like Neurontin or Lyrica), opiates, antispasmodics. Nerve blocks can also be done.
Reverting to an ileostomy may or may not help.
Jan
IPS (irritable pouch syndrome)- similar to IBS, a functional bowel disorder. Treatment is the same: diet, antispasmodics and low dose antidepressants.
Small Bowel Bacterial Overgrowth- treated the same as prouchitis, with antibiotics and probiotics for maintenance. There just is no evidence of pouch inflammation.
Nerve damage or trauma: the nerves in the area of pain were traumatized by surgery or became entrapped in scar tissue, and never recovered. After a year or so, if it has not improved, the damage is considere permanent. Treatment is pain medications, nerve targeted medications (like Neurontin or Lyrica), opiates, antispasmodics. Nerve blocks can also be done.
Reverting to an ileostomy may or may not help.
Jan
how loog have you had pouche
Have had pouch for going on 3 years, multiple anal fistulas with 3 seton drains for 2+ years
I'm currently taking
tincture of opium (up to 1 ml 3x day as needed)
lomotil (8/day)
loperimide (12/day)
amitriptyline (new - 1/day)
colestopol (4/day)
oxycodone (up to 2/day as needed)
hyoscamine (1/day as needed)
diazapam (as needed for rectal spasms)
flagyl (3/day)
high potency probiotics (3/day)
Tramadol (up to 3 times a day)
Phenergen (as needed or nausea)
I'm currently taking
tincture of opium (up to 1 ml 3x day as needed)
lomotil (8/day)
loperimide (12/day)
amitriptyline (new - 1/day)
colestopol (4/day)
oxycodone (up to 2/day as needed)
hyoscamine (1/day as needed)
diazapam (as needed for rectal spasms)
flagyl (3/day)
high potency probiotics (3/day)
Tramadol (up to 3 times a day)
Phenergen (as needed or nausea)
This sounds so strange to me. whenever I am dying with cramps and pain, I know it is my pouchitis creeping back up. Have you tried a round of antibiotics to just see if this helps your symptoms? Maybe you have small bowel bacteria overgrowth which I assume many of us with diagnosed pouchitis may have.
ok sorry..just read all your meds. Have you tried cipro? When I am dying in agony with cramps and pain, one dose of 500 mg cipro is like a miracle pill. Since I have chronic pouchitis, I only resort to taking this med when I am desperate and usually only for brief periods intermittently to keep me humming along. I have tried tramadol, probiotics, lomotil, imodium etc and they do really nothing for me.
jeane,
Unfortunately cipro gives me tremendous hip pain.
Unfortunately cipro gives me tremendous hip pain.
Well, I've seen the pain specialist.
I'm greatly relieved that he isn't an incense-waving hippie who thinks my aura needs adjusting. LOL.
After lengthy discussion of my condition, he mapped out a game plan.
First: Start on methadone to hopefully provide some degree of prophylactic pain relief.
Tomorrow, I'm going in for a hypogastric plexus block (the nerve bundle from the spine to the lower pelvic area). If I recall correctly, this should at a minimum provide the doctor with information for future treatment, and at best could provide pain relief for long periods of time (up to a year). If it works but only temporarily, then a possibility is to kill the nerve bundle that sends the pain signal up the spine.
If it provides no pain relief, I guess it gives the doctor valuable information also, but not sure exactly what. Process of elimination, I guess.
He also touched on the possibility of going back to a permanent ileostomy but I don't want to go there. I couldn't go through that again.
So, it looks like this doctor is being pro-active, which is good. Hopefully he can come up with something that keeps the pain to a minimum and gets me off of opiate pain killers.
He also referred me to a physical therapist who can give me some bio-feedback exercises. No specific information on what that entails, so I'll have to wait and see.
I'm greatly relieved that he isn't an incense-waving hippie who thinks my aura needs adjusting. LOL.
After lengthy discussion of my condition, he mapped out a game plan.
First: Start on methadone to hopefully provide some degree of prophylactic pain relief.
Tomorrow, I'm going in for a hypogastric plexus block (the nerve bundle from the spine to the lower pelvic area). If I recall correctly, this should at a minimum provide the doctor with information for future treatment, and at best could provide pain relief for long periods of time (up to a year). If it works but only temporarily, then a possibility is to kill the nerve bundle that sends the pain signal up the spine.
If it provides no pain relief, I guess it gives the doctor valuable information also, but not sure exactly what. Process of elimination, I guess.
He also touched on the possibility of going back to a permanent ileostomy but I don't want to go there. I couldn't go through that again.
So, it looks like this doctor is being pro-active, which is good. Hopefully he can come up with something that keeps the pain to a minimum and gets me off of opiate pain killers.
He also referred me to a physical therapist who can give me some bio-feedback exercises. No specific information on what that entails, so I'll have to wait and see.
David,
I actually have the exact same problems. All the pain of pouchitis, but no pouchitis. I take Tramadol and Tylenol and it does not help much and since I am a female...that time of the month is even more intense. Percocet is also then only thing that brings a lot of relief, but like you said, not a good long term solutions. However, my GI doctor won't even give me any so I don't take them any more since I ran out after my last surgery. I have even asked if my GI doctor would just prescribe 2-4 pills a month so I could at least have some relief on the worst days. She said I could take ibuprofen every 4-6 hours for 1 to 2 days just for the time when my pain is the worst. This is the first month that I have tried it and it does help way more than Tylenol, but I get so anxious taking that and that it is going to cause other problems.
I have thought to go to a pain doctor and I was encourage to hear you message and they are really trying to control the pain. Did one of your doctors refer you there? Does your insurance cover that? Just curious. Sounds like an option I should try. I'd love to hear your results or how things are going with the things they have suggested. Thank you for your post.
sue
I actually have the exact same problems. All the pain of pouchitis, but no pouchitis. I take Tramadol and Tylenol and it does not help much and since I am a female...that time of the month is even more intense. Percocet is also then only thing that brings a lot of relief, but like you said, not a good long term solutions. However, my GI doctor won't even give me any so I don't take them any more since I ran out after my last surgery. I have even asked if my GI doctor would just prescribe 2-4 pills a month so I could at least have some relief on the worst days. She said I could take ibuprofen every 4-6 hours for 1 to 2 days just for the time when my pain is the worst. This is the first month that I have tried it and it does help way more than Tylenol, but I get so anxious taking that and that it is going to cause other problems.
I have thought to go to a pain doctor and I was encourage to hear you message and they are really trying to control the pain. Did one of your doctors refer you there? Does your insurance cover that? Just curious. Sounds like an option I should try. I'd love to hear your results or how things are going with the things they have suggested. Thank you for your post.
sue
My surgeon said that NSAIDS like ibuprofen increase the chance of pouchitis, and should be avoided in J pouch patients.
I didn't avoid them through my years, but I do now, unless ABSOLUTELY unavoidable, then I take the smallest dose for the shortest period of time (like I might take 1 200mg tab when cramps are the worst or when my fistula is REALLY being a pain in the arse). But it's pretty rare that I go there.
I've had very few pouchitis issues, but the last one I had in 2012-2013 was after a string of ibuprofen use.
I didn't avoid them through my years, but I do now, unless ABSOLUTELY unavoidable, then I take the smallest dose for the shortest period of time (like I might take 1 200mg tab when cramps are the worst or when my fistula is REALLY being a pain in the arse). But it's pretty rare that I go there.
I've had very few pouchitis issues, but the last one I had in 2012-2013 was after a string of ibuprofen use.
posted April 19, 2014 07:09 PM
I need some help and hope and i am hoping someone can help me. I have had my J Pouch for about 15 years. Everything was ok till a couple of years ago. Started pouchitus one right after the other. My wonderful GI doctor that has been there for me forever, said he did not know what to do. I was having a lot of pain like contractions and when it would start i would just breath until it was over. I lost most of my bowel control. He sent me to the Cleveland clinic. The doctor did a scope and new right away because of all the infections in my J Pouch it has become week and the pain is the spasms and that is why i lost control. He put me on Belladonna/Opium and it gave me back my life no pain and most control back. The bad thing i had to quit my job because the medicine is so strong it keeps me from evening driving very much.
Well i got social security first try from what i heard was very lucky.
So the problem is in Nov i have to go on Medicare. With my husbands insurance now i pay 30 dollars a month for 60 suppositories.
I started looking into medicare and was over whelmed. The medicine is 1300.00 a month without insurance is 15 thousand 600 dollars a year.
Since we are down to one income now and it looks like even with medicare part D for prescriptions it is not even listed as one of the medicines it pays for and for a year its around 4000.00 total for your medicines. I don't know what to do we cant afford it at all but the idea of going off it and getting sick again permanently is more than i can bare.
Is anyone taking this medication and can help from somewhere.
I am going to e mail my doctor at Cleveland clinic and see if he can help me or know someone that can.
I also thought about writing the company that makes it.
I don't want to loose hope but so scared if i cant get help i cant take it and than my life will be over.
Please Please if anyone knows of anything or is in the same bucket as me please let me know.
I do feel so alone.
Thanks so much for your time
Frances
I need some help and hope and i am hoping someone can help me. I have had my J Pouch for about 15 years. Everything was ok till a couple of years ago. Started pouchitus one right after the other. My wonderful GI doctor that has been there for me forever, said he did not know what to do. I was having a lot of pain like contractions and when it would start i would just breath until it was over. I lost most of my bowel control. He sent me to the Cleveland clinic. The doctor did a scope and new right away because of all the infections in my J Pouch it has become week and the pain is the spasms and that is why i lost control. He put me on Belladonna/Opium and it gave me back my life no pain and most control back. The bad thing i had to quit my job because the medicine is so strong it keeps me from evening driving very much.
Well i got social security first try from what i heard was very lucky.
So the problem is in Nov i have to go on Medicare. With my husbands insurance now i pay 30 dollars a month for 60 suppositories.
I started looking into medicare and was over whelmed. The medicine is 1300.00 a month without insurance is 15 thousand 600 dollars a year.
Since we are down to one income now and it looks like even with medicare part D for prescriptions it is not even listed as one of the medicines it pays for and for a year its around 4000.00 total for your medicines. I don't know what to do we cant afford it at all but the idea of going off it and getting sick again permanently is more than i can bare.
Is anyone taking this medication and can help from somewhere.
I am going to e mail my doctor at Cleveland clinic and see if he can help me or know someone that can.
I also thought about writing the company that makes it.
I don't want to loose hope but so scared if i cant get help i cant take it and than my life will be over.
Please Please if anyone knows of anything or is in the same bucket as me please let me know.
I do feel so alone.
Thanks so much for your time
Frances
Please call a social worker at the hospital or someone with the CCFA. You may qualify for a variety of programs that can help you.
Great idea thank you so much. I will do that.
Hello again everyone,
Well, I just got back from my internist. I was trying to get him to take over all my medications to get things centralized...he couldn't do it all b/c he is really not knowledgable about the j-pouch/UC/etc GI issues, but he was still very helpful. My pain is still about the same, but he was encouraging and gave me some options and told me what he was comfortable helping me with.
Here are all the medications that I am on:
1. Lexapro 20mg
2. Levsin ER .375mg
3. Lorazepem 5mg
4. Nortriptyline 10mg
5. Tramadol 50mg
6. Zofran/Phenagren
7. Reglen
8. Nexium
9. Lomotil/Immoduium
10. Anti-gas/gas-x-over the counter
11. Tums-over the counter
12. IBS over-counter symptom relief
13. VSL DS #3 by prescription specifically for j-pouchers
14. I take Tylenol regularly
15. Ibuprofen - I am not suppose to take but take every once in a while and it helps, but trying to figure out a way to not have to take this at all.
His suggestions...he said Tramadol is a scary drug and they are starting to have to regulate it more so he would rather figure out the deeper root to my pain. He obviously suggested that I continue to let my GI doctor treat my pain management that is associated with no colon and j-pouch.
I am on Lexapro for pain management, but he recommended that I switch to Cymbalta b/c he has an extra pain receptor that might work better than Lexapro and he felt comfortable switching that right away. So I start that tomorrow. I will know more in a few weeks if that helps. He suggested like others I go to a pain management clinic. He said not to hold him to this, but there are things like Lyrica, Gabapentin/Neurotin...that can help with nerve type pain and might help with some of the pain I am having that feels like pouchitis, but isn't...he said just numbing some of those nerves might relieve some of the tension...but he doesn't feel comfortable being the one to do this and he wants me to really try to figure out the deeper issues and not just manage the pain alone. Narcotics obviously he did not feel comfortable be a pain management regimen, but I can't see my GI doctor for another 6 weeks so he gave me enough to make it to that appointment.
The other thing he told me to look into was a Pundenal Block--he says it blocks the pain in the pelvic region, which is obviously where all my pain resides and during my period and sex it is the worst!
Not sure if this is helpful or just more information, but thought I would pass it on and try to keep you guys updated if anything helps and when/if I find out more.
I am going to see my obgyn, my GI doctor, and I am considering going to Progressive Medical and getting full work up of blood, allergies, etc...to maybe try to eliminate some other secondary symptoms...like possibly yeast overgrowth or SIBO.
Lastly, I have such a hard time with energy. So I am doing little things here and there that are a little more natural that my body can absorb and give me vitamins and minerals that I might be deficient in. I found a product through a friend that has helped. If anyone is interested I'd be happy to get the information to you. I am hoping the blood work will show vitamins I may be deficient in.
Okay, have a great week. Thanks for your help too. Please keep me updated on how you all are doing and any new discoveries for living this new life with a j-pouch :-)
Sue
Well, I just got back from my internist. I was trying to get him to take over all my medications to get things centralized...he couldn't do it all b/c he is really not knowledgable about the j-pouch/UC/etc GI issues, but he was still very helpful. My pain is still about the same, but he was encouraging and gave me some options and told me what he was comfortable helping me with.
Here are all the medications that I am on:
1. Lexapro 20mg
2. Levsin ER .375mg
3. Lorazepem 5mg
4. Nortriptyline 10mg
5. Tramadol 50mg
6. Zofran/Phenagren
7. Reglen
8. Nexium
9. Lomotil/Immoduium
10. Anti-gas/gas-x-over the counter
11. Tums-over the counter
12. IBS over-counter symptom relief
13. VSL DS #3 by prescription specifically for j-pouchers
14. I take Tylenol regularly
15. Ibuprofen - I am not suppose to take but take every once in a while and it helps, but trying to figure out a way to not have to take this at all.
His suggestions...he said Tramadol is a scary drug and they are starting to have to regulate it more so he would rather figure out the deeper root to my pain. He obviously suggested that I continue to let my GI doctor treat my pain management that is associated with no colon and j-pouch.
I am on Lexapro for pain management, but he recommended that I switch to Cymbalta b/c he has an extra pain receptor that might work better than Lexapro and he felt comfortable switching that right away. So I start that tomorrow. I will know more in a few weeks if that helps. He suggested like others I go to a pain management clinic. He said not to hold him to this, but there are things like Lyrica, Gabapentin/Neurotin...that can help with nerve type pain and might help with some of the pain I am having that feels like pouchitis, but isn't...he said just numbing some of those nerves might relieve some of the tension...but he doesn't feel comfortable being the one to do this and he wants me to really try to figure out the deeper issues and not just manage the pain alone. Narcotics obviously he did not feel comfortable be a pain management regimen, but I can't see my GI doctor for another 6 weeks so he gave me enough to make it to that appointment.
The other thing he told me to look into was a Pundenal Block--he says it blocks the pain in the pelvic region, which is obviously where all my pain resides and during my period and sex it is the worst!
Not sure if this is helpful or just more information, but thought I would pass it on and try to keep you guys updated if anything helps and when/if I find out more.
I am going to see my obgyn, my GI doctor, and I am considering going to Progressive Medical and getting full work up of blood, allergies, etc...to maybe try to eliminate some other secondary symptoms...like possibly yeast overgrowth or SIBO.
Lastly, I have such a hard time with energy. So I am doing little things here and there that are a little more natural that my body can absorb and give me vitamins and minerals that I might be deficient in. I found a product through a friend that has helped. If anyone is interested I'd be happy to get the information to you. I am hoping the blood work will show vitamins I may be deficient in.
Okay, have a great week. Thanks for your help too. Please keep me updated on how you all are doing and any new discoveries for living this new life with a j-pouch :-)
Sue
Hi Sue,
This is an extensive list Of medications so I am not surprised you are tired. Does your doctor really think all of these are necessary? I am sorry I cannot help with the medication list or suggestions for the pain, but I have found warm baths are helpful while having anal pain or pouch spasms. Vsl can also make you gassy. I too have a script for tramadol, but use it very sparingly. Finally, I always have discomfort when having sex to some degree and I do think this is a result of having the
recrum removed. You can try alternate positions or look under the sex forum for more support on this issue.
This is an extensive list Of medications so I am not surprised you are tired. Does your doctor really think all of these are necessary? I am sorry I cannot help with the medication list or suggestions for the pain, but I have found warm baths are helpful while having anal pain or pouch spasms. Vsl can also make you gassy. I too have a script for tramadol, but use it very sparingly. Finally, I always have discomfort when having sex to some degree and I do think this is a result of having the
recrum removed. You can try alternate positions or look under the sex forum for more support on this issue.
Hey Jeane,
Thank you so much for your response. I just realized that I didn't put as needed next to a lot of the medications. #2, 4, 5, 6, 7, 10, 11, 12 I take as needed. I am trying to take less and less tylenol, but that is my go to, but I do make sure that I am not taking too much to protect my liver. I definitely know the lorazepam and nortriptyline make me so tired, even when I take them at night so I have basically stopped those and only take if I am having a lot of trouble sleeping. I have been taking Tramadol a lot more, but after talking to my doctor I am praying that the switch in anti-depressant will help more with pain and I can just get off that all together...for one, it sounds like they are finding out that it is really not good for you (not that any pain medicine really is), but for two, I was thinking that this would be making me so much more tired, but I bet it is. Does it make you tired when you take it? Ideally, I would LOVE to get down to just taking Anti-depressant, Lomotil/Immodium, and VSL#3. I am feeling a bit better in the last 2 days?? Maybe the switch is already helping...but thinking it is too soon...maybe it is psychological...either way, feeling better is always a blessing. Exercise and building a little more strength I think would really help me too...I am slowly doing little things.
Well, thanks again. I am so glad to hear you don't have as much pain and I do appreciate your suggestions too...sometimes it is just nice to know that some of this is a bit normal (like the sex thing) and not something else. Heating pads and warm baths/shower are my best friend when it comes to anal pain.
Blessings!
Sue
Thank you so much for your response. I just realized that I didn't put as needed next to a lot of the medications. #2, 4, 5, 6, 7, 10, 11, 12 I take as needed. I am trying to take less and less tylenol, but that is my go to, but I do make sure that I am not taking too much to protect my liver. I definitely know the lorazepam and nortriptyline make me so tired, even when I take them at night so I have basically stopped those and only take if I am having a lot of trouble sleeping. I have been taking Tramadol a lot more, but after talking to my doctor I am praying that the switch in anti-depressant will help more with pain and I can just get off that all together...for one, it sounds like they are finding out that it is really not good for you (not that any pain medicine really is), but for two, I was thinking that this would be making me so much more tired, but I bet it is. Does it make you tired when you take it? Ideally, I would LOVE to get down to just taking Anti-depressant, Lomotil/Immodium, and VSL#3. I am feeling a bit better in the last 2 days?? Maybe the switch is already helping...but thinking it is too soon...maybe it is psychological...either way, feeling better is always a blessing. Exercise and building a little more strength I think would really help me too...I am slowly doing little things.
Well, thanks again. I am so glad to hear you don't have as much pain and I do appreciate your suggestions too...sometimes it is just nice to know that some of this is a bit normal (like the sex thing) and not something else. Heating pads and warm baths/shower are my best friend when it comes to anal pain.
Blessings!
Sue
Tylenol is only a threat to your liver if you overdose. It's easy to accidentally overdose, though, because it's combined into many over the counter medications, and because the dose in your blood goes up if you combine it with even modest amounts of alcohol. I'd sure take Tylenol over Tramadol if the Tylenol worked adequately.
If you already have liver disease, all bets are off.
If you already have liver disease, all bets are off.
Hello Everyone,
It has been a while since I wrote, but I am doing a lot better. My internist actually switch one of my medications, Lexapro, to Cymbalta. He said that Cymbalta has a pain receptor in it. This has helped tremendously!! I barely have the pain, cramping and spasms any more. Just maybe a couple or few times a month if I don't eat right or possibly over eat. It has been so nice to feel a bit normal again! Just thought I would share and see if this would help anyone else too. Thank you for your help and support. Sue
It has been a while since I wrote, but I am doing a lot better. My internist actually switch one of my medications, Lexapro, to Cymbalta. He said that Cymbalta has a pain receptor in it. This has helped tremendously!! I barely have the pain, cramping and spasms any more. Just maybe a couple or few times a month if I don't eat right or possibly over eat. It has been so nice to feel a bit normal again! Just thought I would share and see if this would help anyone else too. Thank you for your help and support. Sue
I know I am very late reading this thread, but I was wondering if the pain everyone feels is similar to extremely bad gad pains. I have had many periods of extreme pain, but it almost feels like I have so much gas in me and can't get it out. I can actually feel bulges in my belly and I can feel the gas moving around but can't pass it. Just wondering if I possibly have something going on. Thank you for all the help.