Need advice about surgery. Please help!

Hi JS,

First off so sorry, this suck. When you should be enjoying your little ones and worrying only about gum in hair and finger painting on the walls you are worried about  BMs and UTIs...

I have a k pouch, have had it for 37yrs so I sort of can't remember that far but I do remember the pain, urgency, frustration and everything else that went into the decision to get rid or that darn colon and move on with my life. I remember how my life was run by my body and not the opposite...I remember never being able to make plans.

I also remember the first taste of freedom once I got my pouch. The panic every time that I had urgency and then the realization that I could wait...The freedom of sleeping through the night.

Those are the things that led me to my decision. I was 18. I made a list of the things that I wanted to do in my life. Then I made a list of the things that I could really do because I was sick and could barely leave my house.  

That was my game changer. 

The k pouch surgery terrified me. It was new, unknown and untested...we didn't know where we were going with it long-term. I would have a stoma for life. But I would have a life. 

NO, I do not regret it. Just that I hadn't done it sooner. The wasted years.

As for the other problems that you are mentioning...some ideas here.

1. The cough. Have you tried anti-histamines? I had a hacking, lung exploding cough for years (pre and post pouch) and it turned out to be that I was allergic to the Flocatti in my room (a sheep skin rug on my bed). I have many allergies and it seems to be part of my autoimmune. I am on anti-histamines for life...But the cough is gone.

2. UTIs...Especially in the summer. 1 or 2 things or maybe both. Wet bathing suits of prolonged sitting on damp towels does it to me and well as the use of non-cotton undies in the summer. I keep a dry suit around to change into and only use cotton, no thongs in summer either. By the way, special non-detergent soap with a balance PH level helps a lot too...since I started I have had only 1 UTI in about 20yrs.

3. Body aches for me are chronic inflammation in certain joints.  (so much worse right now because I have had a slip and fall) Prolonged exercise and NSAIDs help but can hurt your digestive system so it is a balancing act...not too much or one or the other.

That's all I have got...good luck in making your choices, I hope that this has helped.

Sharon

Thank you so much for your kind words and comment. You're very kind..

Wow 37years! So glad to hear you never regret it and got your life back!! Yeah..I should make a list.. That would make it more clear.

I'm so sorry you fell.. must been very painful.. hope you get better very soon!!

About the cough I've been taking allergy medine with nasal spray. I even used some inhalers. Also this summer took two sets of antibiotic. I'm meeting up with pulmonologist next week, I don't have much hope, but I'll see what he says..

Thank you so much for taking your time to leave a kind comment!

I had j pouch surgery in 2014 after being diagnosed August 2012 with ulcerative colitis;  my entire colon was inflamed at the initial diagnosis.  Seems like I tried every medication including biologics, but nothing seemed to work, plus I had become extremely wary of public places without knowing exactly how close I could get to a restroom.  My inflammation was so advanced that surgery was basically required in my situation.  I feel immensely better after having the j pouch surgery; I was having 15 - 20 bms in every 24 hour day, and the "urge to go" was with me constantly.  I now have 3 or 4 bms during the day and generally 2 or 3 during the night.  I do sometimes have issues with leakage during the night but that is being controlled with medication.  To date I am pleased with the surgery.

I just posted on the  "is stress normal# heading. I spoke about how smoking cannabis and exercising regularly had served me very well during my 26 years of living with a j pouch. So JS 2016 I would certainly give regular cannabis use a go as I have always thought that if I had smoked earlier in life my UC may have been controlled or perhaps even cured.

JS2016 posted:

Hi,
I've been visiting this site for a while. It's my first time posting, I would deeply appreciate any advices, opinions, and etc. I'm thinking about getting j pouch surgery. I'm meeting with a surgeon(Dr Ng in OC) in two weeks.

Just let you know where I am.. it's been 7yrs since I was diagnosed with ulcerative colitis, left sided. First few years I was doing good, then past 3 years all the medication(including all the biologics) stopped working. I've been trying to control symtoms with SCD diet and supplements.(currently on Asacol HD) It's somewhat working, but still have 6-8 bm a day, sometimes more or less. Mostly loose, sometimes somewhat solid, depends on what I've been eating. Some urgency, sometimes with bleeding.

It seems enough already to put my life on hold, but I've been suffering with a constant cough past two years as well, it started when the uncontrollable flares started and caused me to lose a lot of weight. It starts during the cold season and stays 6 months, this year the coughs began in July. Doctors can't figure out why.

Also I'm having lots of body aches here and there. My knee and ankle feel extremely weak, sometimes it's hard to get up and use the stairs. I feel sick and weak most of the time, it's very hard to go on with my life.

Lastly this concern is for ladies.. I've been having UTI several times over the summer, in June and July. Got better after antibiotics, but still feels uncomfortable time to time. Never had UTI before, even when I was in worse condition.

So my questions are,
1. How serious was your condition before you decide to do surgery? (symtoms, number of bm, etc) I read lots of post surgery stories and seems like most of them are having 6-8 bm, similar to where I am currently. I'm sure it's very different in condition wise.

2. Did you have any of these symtoms(body aches, coughs, UTI, etc) before surgery? Were they gone after the surgery? Are you feeling healthy and happy with j pouch? Can you carry on with your daily life?

I'm so sorry for making it so long.
I'm a mother of two and need to get healthy. I don't think I can go on with feeling sick all the time. My life seems like it's on hold. Please help me.. any input would be appreciated.
Thank you so much for being patient and reading my story.

I just sent you a private message.  CeeeCeee

My husband struggled with UC for 2 years before his first surgery, which removed the colon and connected the small intestine to the rectum.  It wasn't an answer for him with 6-8 bm/day, plus several at night.  He found an alternative to jPouch, the BCIR (Barnett Continent Intestinal Reservoir.). It has given him his freedom from bathrooms and a new life.  Everyone's body responds differently to surgery, so it may not be the answer for you.  I strongly advise you learn all you can about your choices to find the answer that works for you.  To learn more visit www.qla-Ostomy.org.

I had my first surgery about 7 mos. after being diagnosed with Ulcerative Colitis (follow up colonoscopy showed moderate to severe pan-colitis with dysphasia).  During the months prior to surgery, I had 3 hospitalizations, blood transfusions, TPN, 3 weeks in rehab, tried several meds. Including Remicade, didn't work, had shingles and a skin condition called Erythema Nodosum (less than 5% of those with UC get it), unable to dress myself or walk due to severity of swelling in legs and pain.  Prior to J-pouch procedure I was in the bathroom up to 15 times a day, sometimes less and lost 35 lbs.  At my worse I weighed 80 lbs., my healthy weight is about 112-114.  After final surgery, I am up to 104 and feeling great.  

It has been 7 weeks since takedown and I have about 4 trips to bathroom a day.  I know I am new to all of this, but so far my experience has been really good.  There are some annoying things, such as leakage at night, but I am learning how to deal with that (not eating late in the day and taking Immodium).  I just returned to work this week, part time, eventually plan to increase my hours.  However, I am close to retirement, so am not planning on working full time anyway.  As others have said, do your research so you can make an informed decision.  I was able to consult with and choose my surgeon prior to making the decision to have surgery.  This does not always happen, especially in an emergency situation.

Hi There,

I am sorry to hear that you are not feeling well. I know how you must feel as I also went through a very rough time with my UC. 

I had surgery in 2014. It was emergency surgery as my bowel perforated. I waiting 12 months and then decided that J Pouch surgery was for me. 

One thing I would mention without trying to scare you is that the surgery is pretty big and does come with some complications. Hopefully you will be lucky enough if you decide to go ahead not to have any problems. Unfortunately I did have issues from surgery e.g an abcess caused by a leak and cuffitis. It has been very difficult and I am having to live with my stoma for longer than I anticipated and maybe permanently if this does not solve itself. 

In this case and from experience I would consider surgery carefully if you do have a choice. I do believe a good J Pouch will have 4/6 BM per day. 

I did not suffer with UTI's or joint pain. 

I wish you well and really hope you feel better soon so that you can enjoy time with your children. 

Zoe