Ileostomy reversal direct connect to rectum

I am, as a mom of a daughter with UC for 5 years, at the end of my rope (and its not even my pain!)

Nothing has worked but Remicade and she is not living a full life. Infusions every 6 weeks and no energy. Now gaining unwanted weight with no energy to exercise, stress of college (graduated in May-she's my hero!) and now needs to find a job in a very competitive field.

She is asking a psychiatrist today for a stimulant for her chronic fatigue. It seems crazy!

When she was first diagnosed there were apparently ulcers on her colon. Since then she has had numerous flairs but the colonoscopy has never shown ulcers-perfectly clean colon.
The dr. said the daily pain symptoms were IBD so we still needed the Remicaide.

Probiotics, Vitiman D, anti spasms, nothing has helped the pain. It gets greater after about 4 weeks, then she has an infusion, then relatively comfortable but completely wiped out of energy. She is living in a fog. Sleeping late and then wants a nap later.
She is a hard worker, not depressed but the life ahead of her that is not looking bright. God has blessed her with a very sweet and patient boyfriend, that is our silver lining.

She is 23 so I am not privy to input on her treatment, and was even chastised for taking notes during the appt. instead of her! I have tried to stay positive during all of the failed treatments that led us to this "cure of Remicade" I began to question even the original diagnosis since she has a beautiful colon but still no quality of life. The last straw was when the Dr. said to me "She has not told me she has no quality of life" both of our jaws dropped. I realized that either the dr isn't listening or she is not speaking up. (She said she figured they knew it) The fact that you have to email a nurse to send the email to a dr. does cut down on the information I am sure. She only contacts her during flares for for prescription details. (Large GI wing of a huge hospital)

After that appt. we got a second opinion but it was not any more helpful and she has returned to that Dr.

I am writing all of this to say that maybe it is time to look into an Ileostomy reversal direct connect to rectum. I have seen at least one say it changed his life: Palmetto Man. But cannot email him directly so I am putting it out there. She will be on my insurance a bit longer so maybe this is the time to pause and reconsider this therapy and consider surgery. Surely it cannot be any worse than this and not many diseases have a real cure do they?

I was even looking into worm therapy! and am afraid my "keep positive, we will get through this" attitude is crumbling. I cannot afford to not be strong for my daughter but I am getting desperate for her especially as she needs to support herself soon. She, understandably, doesn't want to return home after college due to sickness-she wants to make her way in the world.

I know many of you have this, and some much worse, symptoms. I just wonder if we did this now would we give her a chance at a normal life or are we playing with fire. I'd ask her dr. but I do not feel welcome at the appointments anymore (not by my daughter, by her dr) and don't want to upset my daughter by rocking anymore boats without research.

We were considering the MAYO in Minn but I think they will tell us the same thing this top hospital in the SW has.

My daughter is pretty private so she is not going to go to a support group, we are pretty much it.
Thank you in advance for your thoughts: you wonderful, brave, strong people of the UC forum.

How can she get a reversal if she doesn't have an ostomy? I wonder if you're talking about IPAA or IRA surgery. IRA isn't recommended for people with UC. IPAA, or Jpouch, is a good answer, but I wouldn't expect it to fix her fatigue issues. I've had that for as long as I can remember, and even after surgery, I still struggle with fatigue. I am thankful to be able to eat, and do the things I did when I was younger. I am thankful that my future isn't full of unpredictability and that I no longer worry about whether I can get to work & support myself, i am thankful that I got my preUC body back, but I still have the same terrible fatigue. The weight thing is also very individual. Some people gain after because they are healthier. I think I was chubby from prednisone, and surgery finally allowed me to get rid of the excess weight and fluid retention. There's no way to know which way your weight will head after surgery. I had mine after 30, so I was at the point where people kept saying it was my metabolism slowing and not to do with UC or meds. I felt like saying HAH to the world when I went back to wearing petite clothes after all was said and done. It was a miracle, one I am thankful for everyday.

As for life after jpouch surgery, it's pretty good. I go more often, but there is no pain, no discomfort, no urgency, no bleeding, no drugs... I wish I went once a day and it was formed, but that wasn't in the cards for me, even with UC, I was going 3x+ daily, usually bloody, urgent and gross - some flares I went upwards for 20x a day. Now I go about 6x, can go less if I take some imodium but I normally do not. Going it like peeing. You sit, release. No waiting... In my opinion, surgery really shouldn't be considered until you're 100% sure, if it's an emergency, or if you've failed all the meds. It is risky and it changes you forever.

The reason a direct connection isn't recommended for UCers is because the rectum is in place & UC almost always effects the rectum. You would likely end up with a rectum full of inflammation & equally as miserable as you started, but with some scars and faster transit. Definitely consult a colorectal surgeon, but it's a touchy area researching surgery for another adult. Either she's interested or she's not. She should also do stool tests to check for pathogens, and try rectal meds. Is she on anything other than Remicade? How about seeing a rheumatologist? Hey symptoms could be related to drug induced lupus. If surgery is on the table, she would need to have an upper bowl evaluation. better to get that over with sooner than later.

I understand your concern and your desire to help your daughter but she does have to be willing, she is an adult. You might push her further away.

Not sure it's your place to tell someone how to deal with their mother/daughter relationship Plucky...Maybe they're very close and if that's the case then there's nothing wrong with that....

As the others suggested, look into a JPouch.

When we are flaring we are often very fatigued and it gets better as we heal. Sometimes chronic fatigue follows us into a remission and it can be from anemia, low vitamin D or B, and all of those things we are much more prone to as UC patients. Blood work can help narrow down the cause, and iron-infusions can be given to combat extreme anemia. All I can say is tests would need to be done, treat the underlying cause (whether it's a UC flare, anemia, a deficiency, etc.) and then she'd feel better.

Sometimes we can get Lupus as a second auto-immune condition, and that would also lead to fatigue.

Some report fatigue on immunomodulators (6MP or Imuran). I haven't heard about persistent fatigue from Remicade (other than temporarily within 48 hours of a remi infusion) but I suppose anything is possible.

A remicade concentration of 1 is too low, should be a minimum of 3 (but often a higher concentration is needed). Remicade dose and/or frequency can be increased to fix that from 5mgs per kilogram every 8 weeks up to a maximum of 10mgs per kilogram every 4 weeks.

Remicade can be used up faster within our bodies when our UC is more severe and increasing the dosing helps.

No, having a remicade concentration of 1 means that is less medicine than needed to provide an optimum therapeutic (healing) effect.

Failing remicade would mean a high concentration of remicade, yet no improvement in UC symptoms.

I would add additional medication to the Remicade, such as an immunomodulator like 6MP/Imuran. As combination therapy often produces the best results for UC patients.

And Yes, increase the remicade dose and/or frequency as well.