Activity

Reply by skn69

Funny how we have so many overlap symptoms. Not the nerves but the seizures and constant cysts... they are both mostly under control...
skn69

Reply by Cassandra

27 years with my pouch, never any pouchitis ,never on antibiotics. Was starting to have a bit of leakage if walking soon after eating...
Cassandra

Reply by skn69

Robin, I am shocked at how badly your body has treated you...and I am so sorry. This sounds like a healing disease. At the risk of...
skn69

Reply by Mema 1

Thanks, TE Marie, but Melatonin doesn't work for me....my main problem is waking up because I have to go the bathroom.
Mema 1

Reply by TE Marie

Melatonin is an over the counter supplement that's been helping me. The doctor said it didn't interfere with any of the medications I'm...
TE Marie

Reply by TE Marie

Sophia, Dah I should have known that! So I am wondering if they did test your thyroid function in a blood test? I don't recall having...
TE Marie

Reply by CTBarrister

My mother and sister both have thyroid issues (I think hypothyroid), but I never did until I ended up with stage 3 thyroid cancer in...
CTBarrister

Reply by Pouchomarx

My 13 year old daughter , who does not have digestive issue at the moment and hopefully never will, was diagnosed hyperthyroid last year...
Pouchomarx

Reply by OldPoucher

Hi David-I had to cancel my Stelara infusion because my mother became very ill and I couldn't leave town then. I thought I'd had an...

Reply by Sophia

Hi Te Marie, I have gastroscope to monitor the gastric gland polyps and the doctor hasn’t seen anything in the esophagus

Reply by TE Marie

It's probably not in your head. Have you ever been scoped down your throat? I've had it done twice and each time my GI stretched my...
TE Marie

Reply by Sophia

This is my first time using this forum. I had my surgery for fap about 13 years ago and recently had a tightness in the throat and...

Reply by kay

i have had xact prob, feels like im crappin razor blades, just had a pouchoscopy from new dr who told me my anus area is closing due 2...

Reply by Enterin

I did a gastroscopy yesterday. The stomach is ok. The doctor also wanted me to do a blood and urine test. I haven't done this for 3...

Reply by Scott F

If you have no symptoms you’d be better off if they hadn’t measured your CRP. What a waste of your time and mental energy. I’m glad I...
Scott F

Reply by JordySimo

Well there's no pain when I'm passing the stool, but I can still notice a mild sort of pain when I feel my pouch filling up and feels...
JordySimo

Reply by Scott F

Re: Rectiv
I’m glad they can get Rectiv for you. The most common side effect is headaches - if those become intolerable you can find out where the...
Scott F

Reply by tf

Re: Rectiv
Thank u for your reply. I checked again and they can order it. I guess the tech just didn't do her job and just told me no. I was hoping...
tf

Reply by Mema 1

Interesting!! Part of my problem is gas and I know if I expel it in bed it won't be just gas. Maybe I'll try turning on my stomach to...
Mema 1

Reply by Bobish

Maybe it's just gas, has your bed or meal time changed? How about diet? I nearly always wake 2 hours after going to bed, I get up and go...
Bobish

Reply by Scott F

Re: Rectiv
Your pharmacy should be able to order Rectiv. Other meds that work for this are nifedipine or diltiazem, but I think you might need a...
Scott F

Reply by Pouchomarx

Dr Church is a colorectal surgeon, Dr Shen is a pouch GI.. not the same type of doc..
Pouchomarx

Reply by Mema 1

Thanks again, you've been very helpful!! I think it's time to make a change for the better, hopefully anyway!!
Mema 1

Reply by CTBarrister

No never had c diff in 25 years on antibiotics. Rotation is my big key. It has I believe prevented me from developing side effects that...
CTBarrister

Reply by Mema 1

Thanks, CT....I think it's time to speak to my doctor and maybe even send your message to him to see what he thinks. I just hate being...
Mema 1

Reply by CTBarrister

Mema, I also take antibiotics with Remicade, but unlike you, my Pouch looks good. My instructions when I went on Remicade from my doctor...
CTBarrister

Reply by Mema 1

About 3 years or so. When I had my scope a few months back the doctor said that my Crohn's was so much better he couldn't believe it.
Mema 1

Reply by Winterberry

Is it possible that it's a muscle or nerve spasm? Or the start of a hemmoroid? Or inflammation that is irritated when you push? Just...
Winterberry

Reply by CTBarrister

I have not heard of biopsies being able to determine the existence of Crohn’s or not, but in any event the actual diagnosis at this...
CTBarrister

Reply by Scott F

Mema, I’m on Cipro and Flagyl. When Cipro alone stopped working adding Flagyl did the trick, even though Flagyl alone never worked for...
Scott F

Reply by Mema 1

Yes, Scott, I had a scope a few months ago and that's why the doctor put me on Augmentin. Actually I was great the entire time I was on...
Mema 1

Reply by CTBarrister

Based on your last post I would say your sleep issue probably is pouch function related. If antibiotics are not helping there are...
CTBarrister

Reply by Scott F

Pouchitis doesn’t always respond to Augmentin (Augmentin never helped me). So Augmentin not helping doesn’t tell you that it isn’t...
Scott F

Reply by Kh1988

Wanted to leave an update! Got a call today from my surgeon. She said the biopsies came back ok. Only showed mild inflammation. Nothing...

Reply by Mema 1

Thanks you all for your responses....I will definitely suggest a sleep study to make sure that I don't have sleep apnea and go from...
Mema 1

Reply by Scott F

I’m stretching out my stockpile of VSL #3 (by using a lower dose) and hoping it becomes available again before I run out. Visbiome is a...
Scott F

Reply by Scott F

Fair enough - I misremembered the original post, which says nothing about nighttime bathroom visits, though more leakage is mentioned...
Scott F

Reply by temoty

so you're saying to try and get a double strength script of visbiome until VSL#3 comes back? Nothing is clear in any of the forum posts...
temoty

Reply by CTBarrister

I would only suspect pouchitis if Mema is getting up due to urgency or going to the restroom, which she has not indicated to be the...
CTBarrister

Reply by Scott F

Sleep apnea is pretty common, though it most often shows up as daytime sleepiness rather than frequent episodes of complete awakening.
Scott F

Reply by CTBarrister

Mema, I have had problems along the lines of what you described with my sleep cycle most of my adult life. You may want to have a sleep...
CTBarrister

Reply by Mema 1

I was on Augmentin for a month and it still happened....although I have more leaking I'm doing about the same, and I haven't been doing...
Mema 1

Reply by PouchLogic

Definitely sounds like something is up. I know I find sleeping the hardest if my pouch is being bothered. Is it possible you are...

Reply by girlunky

Is it your Jpouch waking you up, or could it be something else? For example, when I reached peri-menopause I had an incredibly hard time...

Reply by blufnger03

I had a GI doctor once who used to say "if you are going to be sick whether you eat toast or a steak, then why not eat the steak?"...

Reply by Jan Dollar

Sorry you are having such a difficult journey. First, no need to keep blaming yourself for not being a perfect patient. Many of us has...
Jan Dollar

Reply by maddie18

Hi Yes, I have been through this too many times since myo surgery in 1986. But only once I went in to surgery thto repaire the blockage.

Reply by Paul H

Gives me terrible gas, have tried it several times with same problems, even lowering the dose. Here in Spain available as Vivomixx,...
Paul H

Reply by Winterberry

Kay, the "shrinkage" sounds like a stricture. This is when some part of your exit is narrowed, and can cause bowel movements to be thin...
Winterberry

Reply by Scott F

Two capsules of Visbiome is a pretty low dose. It might have a small effect on delaying or preventing pouchitis, but the dose does...
Scott F

Reply by PouchLogic

Hockadoo, you really shouldn't hijack someone else's thread. As for your questions, it all depends on you everyone is different.

Reply by Hockadoo

Hopefully someone can answer these two questions: 1) Is taking 2 capsules of Visbiome per day really that effective? It's gets pricey...
Hockadoo

Reply by PouchLogic

Just go to visbiome.com Visbiome is the original vsl3, if you need double strength you need a script. Read the other forum post if you...

Reply by Scott F

The doc has you on the right path. If it’s diversion pouchitis then the best treatment is takedown. If it seems to be IBD-caused...
Scott F

Reply by Scott F

Kay, the sensation of “crapping razors” is often a sign of an anal fissure. If that’s what you’ve got it can be treated with...
Scott F

Reply by Kh1988

That’s very reassuring to know that you’ve had quality life with Crohns and a jpouch. Hope it’s the same for me if I end up having...

Reply by CTBarrister

Just take it 1 step at a time. I ended up with Ctohn’s In Pouch and in neoterminal ileum years after J Pouch surgery but it’s been very...
CTBarrister
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