I need serious help. 

I had a Total Colectomy, with Rectum Removal in December 2017. This was followed by a UC diagnosis in October 2016.

After a combination of UC flare, C. Diff, and toxic Megacolon they decided to take it all out and give me an ileostomy.

I went through the 3 step process to have my J pouch. 

I’m One Year and 8 months out from takedown. My life has been hell since the Takedown. I have had a very small leak at my connection site since the operation that doesn’t seem to be healing. 

I attend a Hospital in the US that is heavily funded and is a “learning hospital” 

The doctors/students are qualified however they cycle every three months, and I basically see a new doctor each visit which I’m sure you can imagine is frustrating.

at this point we have tried so many meds 

small list

 

40mg prednisone for 7 months 

5 months Ciproflaxin & Flagyl 

(My body can’t handle these any more I  am now supplementing with VSL 3.

Humira Weekly for 8 months

Mesalamine Rectal Suspension Enemas, these help however my anus is so inflamed and soar it’s hard to take this one regularly. I tried oral Mesalamine with no results and Canasa (Mesalamine Suppositories).

immodium, bentyl, pantroprozole, 

Many more that I can’t remember.

on my last visit I told them I was taking 15 medications which is unreasonable and they agreed. I am now tapering off some meds and have been tapered off prednisone for over a week. 

 

my pouch is everywhere  

one day I have solid stools, the next I have pure liquid spraying out. One day I feel okay, the next I have excruciating abdominal pain. Some days I go over twenty times, other days I’m so backed up that it hurts to push out even a pea sized stool. I have slight blood sometimes.

I have been diagnosed with UC, Chrons, Pouchitis, & I have had a UC specialist tell me she thinks I have none of this and the leak is causing inflammation. The surgeon I see disagrees and is convinced it’s chrons .

I was admitted 4 times this year and a heavy dose of intravenous cipro/Flagyl and Solumedrol seems to put my flares to a hault until I am sent home, then slowly back to this..

Im in my twenties, my family has given up on me entirely, my lovers always leave me when I’m at my worst, I am nearly ready to give up but I won’t because I know someone reading this has been through worse.

I keep a positive mindset but I need help, I cannot eat ANYTHING without causing severe inflammation. I am very conscious of my eating and know what to avoid  

Ensures/Boost are keeping me alive and I have stopped drinking those as I have no appetite. I’ve gone on a strict vegan diet before, no added sugar or sweeteners, no dairy, no gluten, low fodmap, you name it I’ve tried it.

I see nutrionalists, GI and liver specialists, UC specialists, Suegeons, Primary Care, have been to other hospitals. NO ONE, has been able to figure it out. I have no health insurance by the way, which is not an issue currently other than keeping bf me from going elsewhere. 

It hurts tremendously to even attempt to sit on the toilet and push anything out. None of this is new I just cannot handle it anymore, I need serious help.

When I go to the ER it’s the same routine.

After 5-6 hours of waiting in pain they X-Ray me or do a CT and the ER doctors automatically think “blockage” when in reality it’s just an inflamed pouch that they probably haven’t seen before. I am then put on a no food or drink order (the last one lasted 7 full days, yes one week of no eating while in the hospital. I was living off intravenous fluids, I was literally hallucinating.) Then they wait for me to have lessening symptoms while pumping me with Morphine and Norcos (Yes, Consipation.. and I do not take these when I’m not I amnot in the hospital)  and discharge me.

I am Suffering, I’ve been denied disability & I can hardly cook for myself . I live in fear of blockage everyday as it is a frequent problem.

 

I need some motivation, tips, tricks, anything.

I wrote this as I lay in a hot bath which I take several ( at least 5 ) a day which is the only relief I get and my bowels tend to release while I’m bathing, sometimes it’s the only way I can go. I’m stuck at home 90% of the time. I am so tired and can’t be away from my bathroom.

Now, my major problem.

Gas. So. Much. Gas.

Im talking gut wrenching, painful, gas explosions inside of my intestines and pouch. My partner and mother can hear it from across the room when my stomach starts “gurgling or rumbling”

The ONLY relief I get is laying down, going on all fours and letting it rip... For a very long time.

 

Sometimes I will pass gas over 200 times in one bathroom visit in this position. I have been stuck in this position passing gas for nearly two hours before. My knees get week, I fall to the floor, my anus feels as if glass is being dragged against it. I didn’t know the human body could hold so much gas especially without a colon and rectum.

My body cannot take much more.

I need help that I can’t get from the doctors.

Thank you for reading this, I really need any help I can get.

Original Post

Vast amounts of gas are sometimes a sign of SIBO (small intestinal bacterial overgrowth). When I had SIBO a few months of doxycycline took care of it. I’m told that rifaximin is commonly used now for SIBO, and that should have a very low risk of side effects. Good luck!

Scott F posted:

Vast amounts of gas are sometimes a sign of SIBO (small intestinal bacterial overgrowth). When I had SIBO a few months of doxycycline took care of it. I’m told that rifaximin is commonly used now for SIBO, and that should have a very low risk of side effects. Good luck!

Scott, thanks for your reply. We have discussed this before and I appreciate the recommendation. I was obsessing over SIBO remedies for months with no relief.

I think you are absolutely right, in fact I recently discussed the following statement to with my doctor and he agreed. With a J pouch, we all have SIBO as our pouch is formed from our small intestine and there is no where for the bacteria to go besides our pouch.

From what I understand the large Intestine has a Spinchter if it’s own that does not allow for much bacteria to enter the small intestine. We do not have this mechanism without our colons.

 

I will make it an effort to try doxycycline even if I have to find a different doctor to prescribe it, I had asked for it several times per your last suggestion of this medication. They do not want to prescribe it as it will “wipe everything out of my system”, that’s the plan followed by serious VSL treatments. We have tried Ryfaximin two or three times it actually worsens my symptoms. I want to try Visibiome however I am afraid to switch as I know you are aware and probably more educated on that lawsuit and ingredient difference.

Just wow! 

I didn't have near what you are going thru and went to an ileo. 

The glass burning anus no sleep feeling like I had to defacate 24/7 and having to work 40 hours a week drained me after two years.

I gave up. I have my cure. 

I'm am so sorry to read what misery you are going through. That's terrible. 

I'm at an age where I don't care if I have an end ileo. 

If I were younger it'd be different. 

I'll say it again. As soon as I got rid of the pouch my problems all disappeared. And more than 4 years later I have zero problems. A pouch is not for everyone. And not everyone can live the way your living. I tried too. A pouch of any kind was not in my future. 

I'm good though. 

I wish you the best but I read some of myself in your description. That's not good. I hated every second of what I went through. Every second. 

Richard. 

Pouchbro,

oh goodness what an AWFUL time you are having! I’m not sure I have a lot of suggestions but just wanted to let you know you have been heard and your suffering is very real and you have a right to be exasperated. I don’t know about social supports in the US-are there no disability programs you can apply to while you focus on your health? Are there any friends or relatives you could live with to ease the stress while you manage your health? Maybe a social worker at the hospital to talk to to help connect you to local supports?


Have you tried baby butt cream (zinc oxide) for the burning from the suppositories? I use my son’s diaper cream and honestly it works like magic. 

I really hope you get the help you need soon-what you are going through is awful and it may not feel like it, but there will be an end to it. I was in my early 20’s when I had all my surgeries and complications and know it feels like it will be forever, especially when you are young and your peers are a bit clueless about what it’s like to be seriously sick. Please do take care and keep us updated.

Have you tried the Paleo diet or something in the same family...no carbs whatsoever, just proteins for a few days...no dairy, no cheeses, yogurts or sugars...no bread, cake, rice or potatoes...you get the idea...high protein, low carb, no sugar...do not bother with the veggies for the first few days...no carbonated drinks or wine or beer...

Keep a food diary and see if anything helps at all.

It's a thought...and is worth the try if you haven't already done it.

Sharon

I don't personally have UC but have been taking care of my son for 9 years watching him go through the process.  From pouchitis to sinus,  not fun.  He was healthiest in the 3 months he had the iliostomy before takedown.  I think you can probably have a full life with no pain by going back to the bag.  Hoping for the best for you.

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