3rd day on hc suppositories for cuffitis.

Here is my thinking. You can take or leave it, since I am not in your shoes, and only you can really decide whether an observation fits your situation or not.

I think you are focusing on how much time has passed since colectomy, or take-down, or whatever. Perhaps too much focus in that direction. The reality is, or at least was true in my case, that each time there is a complication that upsets or interferes with progress or adaptation, it is like starting over. Or it is almost like that. It is frustrating, but you cannot make the clock go backward, only forward.

So, I would suggest focusing on progress made since your most recent setback, diagnosis, and new treatment, which has been three days. Not much time to expect healing and to be eating a more normal diet. You would be really surprised at how long you can go on a very limited diet. You say you cannot tolerate Boost, but I cannot remember what you said about Ensure. There is nothing magical about eating solid food, and you should be OK with a liquid diet until things settle down with your butt. With your history, I would not encourage you to be adventurous until things were healed better downstairs.

The IBS is a different issue, and colectomy does not really solve that, unless your dietary intolerances were purely due to UC (they usually are not). If you were expecting some sort of miracle there, I am sorry you were led to believe that. There are many, many websites that focus on IBS and you probably would get lots of ideas there. But, there are numerous folks here that also have IBS and manage OK. My husband has UC and IBS and does pretty well with Ensure and protein meal bars (they don't have that much fiber) when he is in the middle of a flare of IBS and/or UC.

You are probably thinking that if one more person says to be patient, you are going to explode. But, you won't. If you have a chill pill, now is a good time to take it. I know, stupid platitudes, but, it is all I've got, no magic fairy dust for you....sorry.

Jan

i would love to live on boost. i used to do fine til a bad bout with pancreatitis and gastritis flare. now anything with citric acid has me clutching my chest with tightness. i do follow all the ibs site guidelines and still those foods get me. my only real focus is to add foods. its been years and i was told to go out and start eating and i see so many on here doing just that. i cant help the why me thing. its been way too long since ive been able to eat more than rice and spinach, my old colitis safe food. i dont mean to sound like a whining complainer but jeepers im starving for nutrition and textures and funnnnn!!! im italian from a huge family that never stops cooking. im dyin ova here

To add to what Jan posted, it very often takes a full year or longer for things to settle. My pouch is almost 24 years old and I still see changes. If you look at this whole process as not completely resolving for 12 months or more than maybe you can wrap your head around that timeline. If things resolve sooner than that, then what an awesome bonus.

I still think you really need to work on the therapy/antidressant angle and give it a chance to work. Many, many new (or even old) introductions take a while to settle in or settle down. Dismissing a new treatment or food before giving it a real chance isn't going to help in the long-run. For instance, many people have benefitted tremendously from VSL#3. And many of those people experienced gas, pain, excessive trips to the bathroom. But almost all of those who stuck it out got the benefit they were looking for.

kathy

BTW - for most of us spinach is one of the most rapid transit of foods which causes some distressing diarrhea. Personally, I would cut that out of my diet for a while and see what the results are. It can always be added back in later.

kathy

when my body is in pain i avoid whats causing it. are you saying ignoring those signs can help. i will if i have to but it seems weird...

What I was saying is that you should give things an opportunity to start working. I realize that I failed to also mention that those people who initially had problems with VSL#3 cut back the dosage to allow their systems to become acclimated. Please note that VSL#3 is OTC. I wouldn't just willy nilly adjust prescription medication without talking with my doctor though.

kathy

ok cool. i tried my primal defense and it killed me. ill try a half or a third even and see...

Yep. If something seems to bother you, then try half, or hold off a week or two before trying again.

But what about Ensure? I still don't know what he problem is with that. Plus, they have puddings and bars.

Personally, I can't seem to make any specific conection between specific foods and my function, other than high sugar content, high chocolate content, or leafy vegetables, paticularly spinach. But, desn't keep me from eating them. Either it desn't bug me that much, or I'm OK with some cramping and diarrhea. Maybe since it has been over 40 years since I was diagnosed with UC, I forgot what it was like to have a quiet belly. I do know I don't have IBS though, so I'm sure that makes a big difference.

My husband has noticed a difference since he started Align probiotic. You cannot assume all probiotics will cause problems, and you need to try a different one if the one you have isn't working out. But, yeah, often it is worse at first before things settle. Just like anything else tjough, it is individual.

Jan

i do have a question about gastritis. all my docs agree i have it but other than throwing nexium at it which made it worse nothing else has been offered. any advice? i mean i googled it for years and it always says nexium etc. im guessing that could be causing or adding to food intolerances. even tried pepto and made it worse just like the nexium. tighter chest harder to breath etc...

This is where I am confused. Tightness of the chest and difficult breathing is not a symptom of gastritis. The only thing I can thing of that is similar and associated with gastritis is the cough associated with gastric reflux, but not simple gastritis. If you get breathing problems with a drug, it usually means an allergy.

Is it possible you have two separate things going on there? Have you ever been evaluated by a pulmonologist? Pulmonary function studies? This just seems completely odd to me, unless I am missing something, or misunderstanding what you are explaining.

Jan

i was evaluated by the team at cleveland clinic for lung and chest xrays and scans asthma and lung function tests etc. its usually hard to breath but gets much worse if i dont have anything in my stomach for awhile and if i ingest vinegar citric acid etc its awful. to me that seems like gastritis no?

No. It sounds like a respiratory problem that is worsened by a sensitivity to ingestion of mild acids, perhaps even IBS type triggers. But, this is usually reflux, not breathing problems.

You can have an upset stomach, dyspepsia, all sorts of things without gastritis.

Jan

would love to find a solution...

I am still unclear how your gastritis and difficult breathing would be connected, but regardless, if you avoid those triggers, then you should be OK. Here is a link that might help you troubleshoot the problem. Usually, something like this is not a simple cause and effect, but more of a complex response, mediated by multiple pathways. Anxiety and panic disorder can even play a role.

http://www.helium.com/items/16...-after-taking-a-meal

So, why not Ensure? There is no vinegar or citric acid in it. Most people who have a problem with it, it is because they don't like the taste. Lactose and gluten free too. They used to have other products than just the shakes, but I guess they got rid of them.

http://ensure.com/products/ensure

Jan

im kind of excited about the ensure. the boost has citric acid so i assumed the ensure did too. gonna grab some tomorrow and see how it goes. thanks jan.

im heading into day 4 on the hc suppositories and just now i had a relatively easy but gassy bm. the ache on the right side of where i think is my anus and rectum is aching so bad it radiates into my right glute. does this sound like pain from cuffitis or is it something all together different because i feel no better than before i started the hc. its the pain thats been hurting my recovery since takedown. i wonder if my surgeon missed the pain culprit during my scope or maybe its just a trapped nerve or something. it actually has me moaning at the moment. it almost feels worse since my scope. im so hoping its from the cuffitis and eventually the hc will help it. im not being impatient i was just hoping for what some were saying in reply to me that they notice improvement is 2 to 3 days and even more so in a week. im a bit frustrated because this pain has not let up since takedown and even before. im sad to say i think i just answered my own question. if it was from before takedown how could it be cuffitis related? my pouchogram the day before takedown would have shown it. it almost feels like the throbbing pain you get from a broken bone.

Trapped nerve or nerve trauma makes sense, since this can take 6-12 months to resolve. You could have abscess-like inflammation too (cellulitis), which is quite painful, would not necessarily be evident on scope or from the outside. Even CT may not show it. If it goes on long enough, your WBC would elevate and you'd develop systemic symptoms. Antibiotics would be the treatment. I forget. Have you tried a course of antibiotics?

Then again, could be something else altogether. But, as long as you are seeing improvement with the HC suppositories, you should stick with them for a week or two, and don't expect complete resolution in that time frame, just because others might have.

Good luck with it.

Jan

i have not been on any antibiotics. i questioned and abscess and my doc asked how long i felt the pain. its been since july 26th. he said something would have come of it by now if it was an abscess. does that sound right and if so maybe a trapped nerve is the likely issue. i can live with something that will resolve but i fear chronic things as im dealing with enough of them already...

There have been people here with years-long sagas of presacral fluid collections, inflammation and what-not that defied detection, and did not cause classic abscess symptoms. Only after surgical exploration did it become evident. I am not saying that is the case for you, but if the suppositories do not give you steady improvement, I would ask about a short course of Flagyl or Cipro. If it improved your pain, then you might have an answer.

If it is nerve trauma, you need to give it 6-12 months because that is how long it takes to regenerate/repair. Nothing you can do to affect it.

Jan

if cipro does ultimately calm it does that mean im on the way to healing or is it not that simple?

also, can my current surgeon tell me from the sig he did last week if my old surgeon did a good job on the size of the rectal cuff left behind?

Probably, but it could just be subduing symptoms without actuallytaking care of it.

One step at a time. Right now, HC suppositories...

Merry Christmas Tom!

Jan