I've had my pouch since June 15. I'm having so much pain that the doctor says is the pouch spasming as it grows bigger and it will grow bigger for about a year. She put me on amitriptyline. I started on 25mg and worked up to 100mg. Since I started this med I have gained almost 20 pounds, and it's only been 5 weeks. I'm also losing a lot of hair. I've backed off on the dosage to 50mg for the last week and the pain is back pretty much like before. The amitrip. did help a little but I still had the pain off and on. So, is it worth getting fat and bald to have pain, just less frequently?? Has anyone had these spasms and found relief some other way, medication or otherwise?
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chasingtime (Guest)
imodium no yeast sugar or animal helped my spasms greatly. i cant wait to add them back though.
My doc prescribed hyoscyamine for cramping. It is a tablet you put under your tongue every four hours as needed for pain. I am not sure if this can help you or not.
I have stayed away from anti depressants for the exact symptoms you are describing. Hair loss and weight gain are common symptoms. I hope you feel better. I know the pain can be very disabling.
I have stayed away from anti depressants for the exact symptoms you are describing. Hair loss and weight gain are common symptoms. I hope you feel better. I know the pain can be very disabling.
katieo
I hope you find pain relief.I have totally given up trying to find pain relief,I will be leaving my job and everything else,you try and try and try and get absolutely no help from your doctors who refuse to consider me to go back to end ostomy which I have requested,I will not tolerate this horrible existence,maybe you will be luckier.
I hope you find pain relief.I have totally given up trying to find pain relief,I will be leaving my job and everything else,you try and try and try and get absolutely no help from your doctors who refuse to consider me to go back to end ostomy which I have requested,I will not tolerate this horrible existence,maybe you will be luckier.
chasingtime (Guest)
if you guys need pain relief why not hydromorphone? either 2 or 4 mg every 6 hours. it also slows things down. im usually active in between doses but i look forward to the next one.
chasingtime (Guest)
are you guys having good days and rough nights or just rough around the clock? also pauln, when was your takedown?
I would suggest tramadol for pain over hydromorphine. The latter made gave me insomnia and also made me stomach sick. I just did not care for the overall effect.
Thanks for all of the advice and responses. It's good to know I'm not alone. I do have hyoscyamine, I'm going to try that. I've almost got myself weaned totally off of the amitriptyline. I've gained 22 pounds at this point, I just keep gaining which makes me depressed and with all of our problems, who needs another reason to be depressed?
Thanks again, I hope everyone is doing well!
Katie
Thanks again, I hope everyone is doing well!
Katie
If your having spasms Valium works for me and even taking Vicodin helps a little with me it slows me down enough where it's not as painful.
How do you function on the valium? I don't think I could do anything but sleep.
I suffered from the same spasms for almost 2 yrs before things settled down. For a year I took Hyoscyamine to help and occasionally still do. I am also on Tramadol for joint pain, and one of the great side effects is it helps with all pain. Two years may be too long for some, but I took it one day at a time. As the months went by things continued to improve.
My tolerance for pain medications and the Valium is high. It just does enough where the spasms stop.
I take a very low dose of valium for spasms too. I don't feel any different but the spasms decrease. I found changing my diet to include as little animal fat as possible decreased the spasming.
Right now I have pouchitis but no spasms.
As to the weight gain...have you talked to your doctor about it? Twenty pounds is a lot to gain in such a short time period. It must feel very frightening and depressing. Personally, I would get off that drug as soon as possible. The health risks of being obese are very real.
I gained 65 lbs during the two years I spent in bed. I could not stand to look at myself. So far I have lost 20 lbs in three months but I am also race walking 25 to 35 miles a week. It is incredibly hard and painful. I would not want to see you go through this.
I am having Thanksgiving tomorrow with 8 doctors on the guest list. It is going to be hard not to complain about how doctors rarely take a prescription's side effects seriously.
Right now I have pouchitis but no spasms.
As to the weight gain...have you talked to your doctor about it? Twenty pounds is a lot to gain in such a short time period. It must feel very frightening and depressing. Personally, I would get off that drug as soon as possible. The health risks of being obese are very real.
I gained 65 lbs during the two years I spent in bed. I could not stand to look at myself. So far I have lost 20 lbs in three months but I am also race walking 25 to 35 miles a week. It is incredibly hard and painful. I would not want to see you go through this.
I am having Thanksgiving tomorrow with 8 doctors on the guest list. It is going to be hard not to complain about how doctors rarely take a prescription's side effects seriously.
Buscopan Hyoscine Butylbromide tablets work well for me to stop the spasm pain, they don't get rid of it entirely but enough to get by on. If it is really bad I take 10mg Oxynorm which gets rid of the pain and slows the bowel right down. Does not make me drowsy and I try not to do it too often. Hope you find some relief soon. Caroline
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