Medicine

I finished up a round of flagyl & before that I was on cipro for about 2 months and finally feeling good. Have been med free for a month. I don't know if it was just the one year mark, quitting my stressful job or the antibiotic but things are finally starting to turn around for me. I don't take anything else except my VSL#3 DS daily. I hope you can get off the meds soon. I know how awful it is to feel awful.

What might be helpful for us, Grandma, is a little more detail about your symptoms. Not feeling so great could mean anything from chronic diarrhea to the many side effects of all the drugs you are taking. You are taking two types of antidiarrheals, two types of antispasmodics, and an antibiotic. The combination of these could be adding symptoms to make feel less than great.

Specifically, the combination of two antispasmodics can give you dry mouth, jittery feelings, insomnia, blurred vision, loss of taste, nausea, dizziness, palpitations, etc. I know I would have difficulty taking those drugs frequently, because of the side effects.

If this is only the diarrhea, then that is another story. If you have been taking Cipro long term, you either have chronic pouchitis or chronic bacterial overgrowth. Maybe a different approach is in order. Also, do not be afraid of the codeine, as it actually is safer long term, with fewer side effects, than the antibiotics or antispasmodics.

Another consideration is the possibility of IPS (irritable pouch syndrome). You may be able to reduce or eliminate some of those other drugs by adding low dose tricylic antidepressants (not because you are depressed, but as a treatment for the physical symptoms of IPS).

Lastly, at least for me, I continued to see functional improvement many years beyond that first year, that my surgeon told me was the end of adaptation.

Jan

I was also wondering why you would be on bentyl and levsin at the same time. I took both separately at different times. Both are anti-spasmodics and both have strong side effects. I am not sure why 2 anti-spasmodics are needed to get the job done. My own experience is that either bentyl or levsin alone shut down the spasmodic bowel BIG TIME. The problem was the potent (for me) side effects of these drugs.

Yes, Levsin and Bentyl are in the same class with the same action. Taking both is like taking a double dose. Generally doctors prescribe one or the other, and if they prescribe both, it is for one to replace the other, not with the intent that you take both simultaneously.

Side effects of these drugs is a primary reason many people cannot tolerate them long term, and the higher the dose, the more likely there would be side effects.

Lomotil and Imodium also are in the same class (to each other, not to the antispasmodics), but it is less likely that they are causing you side effects that make you feel lousy (but it is possible, if you are overdoing it). Lomotil contains atropine, an anticholinergic with similar effects as the antispasmodics, so that could be further adding to those side effects.

Jan

Grandma,
At one year I was having troubling issues as you are and on many of the similar meds you are taking. I'm not sure if this will make you feel any better, but I'm almost at the two year mark and I am finally off antibiotics after two full years and also off rectal suppositories. I was taking these chronically also. Only on rare occasions, like today,(college tour with daughter) do I take lomotol.
I know this may not answer your initial question, but my point is it took me way longer than most to feel better and I do still experience good days and some bad. Time should definitely help you see improvement as well as possible switching up or eliminating some of your current meds. I played the "try this' med ( augmentin, cipro,flagyl, anucort, xifaxin,Canasa, cortifoam,ativan,niifedipine, pentasa, nexium,Xanax, rectiv,nystatin cortisone cream vsl etc etc etc ) for the better part of two years trying to find ones that would help my pouch and cuff behave better. I felt like a walking drug store. It takes a huge dose of patience and preserverance for some of us, as well as a very qualified GI doctor who can think outside the box. Here is to better days ahead

My doctor pretty much gives me what I want. He was more for the bag. But I was so dehydrated with the bag I ended up in the hospital more often and we even did my take down at 7 weeks cause I was so sick. So the bag is really not an option for me. But there are days I want it back. I stopped the bentyl since posting for help. I almost feel like I am going backwards. I spent over 6 times in the bathroom this morning in less then 2 hours. I do have a sinus drainage so I am wondering if this is causing my issues to get worse.

I had a scope done August 1, 2012 and there was just a mild mild inflammation. I am only taking cipro once a day but I am thinking I need to try something else. I am sick of being tired and just feeling like ****. Sorry to say. I have no energy. I hate the suppositories and I won't even do them. I found no relief at all anyways. I am on Effexor for my nerves. I also have IC so I take Elmiron. I am so sick of being sick. Oh and I always have zofran ready. I am sick of being sick to my stomach. I don't read that much around on this site. So am I the only one who has nausea?

Thanks for letting me vent. I am so thankful for all of you. You truly keep me going. Some days are just so depressing.

Can anyone read my above answers and see what they think? I so at a lost of what to do. Any help would be great.

Thank you soooooo much everyone,

I often feel nausea and no appetite. However, it takes a bowel obstruction for vomiting to occur, in my case. I am also sick of being so sick. I love the moments when I feel well enough to do things that I enjoy. I wish I could help you with good advice.

I am 5 months post takedown. I do feel nausea every once in awhile too, due to certain foods I eat... Either a partial obstruction or just not settling right. Dr did tell me with my upper endoscope in December that I had a bacterial in my stomach, helicobacter pilori. Can't treat it yet, due to other treatments/medicine I'm on.

I can tell you that I felt like sh@# as well, wanted to give up, and just sick and tired of it all...until my Dr suggested self dialation. Off subject, but since doing thus, myself, I have started feeling better. I still have really crappy days and can last week's, but I finally started having good days and that's big because I wasn't having any good days.

I have had to eliminate a lot from diet that irritates my stomach or pouch or at least keep it to a very minimal. Chocolate, lettuce, milk, sweets, artificial sweeteners, tomatoes/sauce/ketchup, oats, wheat, flavored chips/bbq... The list goes on but you get the hint. I do believe it will get better, I am very tired all the time but I'm done wasting my days away waiting. I take full advantage of the semi good days I have and get myself and kids out of the house.

Heidi

Grandma, have you had an upper endoscopy (EGD) or any studies of the esophagus, stomach, duodenum and beyond? Nausea is not typically a pouch issue, but more of an upper GI thing. Also, your IC probably has more involvement with your symptoms than you think.

How about a second opinion from a different GI? It seems like this guy is out of suggestions. Plus, if he is anti-j-pouch, then he may not be very motivated to make things work for you.

You may want to PM Vanessa. She has IC also, along with a k-pouch.
http://j-pouch.org/eve/persona...profile&u=7367091016

Jan