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I was diagnosed with UC back in Feb. of 2005. I was able to manage it quit well until Sept. 2008. I began dropping weight and then come the blood. I was having 25-30 bloody bowel movements a day. After repeated trips to the G.I. and taking every medicine including Remicade, nothing was helping. In Jan. 2009 I received a call from my G.I.s nurse where she stated that she just wanted to let me know that my blood work was showing consistant with Chrohns. By May 2009 and two months off work a colonoscopy showed that my entire colon was diseased and I was told that there was nothing else they could do for me. To make a long story short I had a total Colectomy on May 20, 2009 and just 5 weeks later I had my take down surgery ( June 24, 2009 ). This has been a roller coaster ride and now I have been diagnosed with my first case of Pouchitis. I am in gut renching pain and feel like my world is falling apart. I am working a full time job as well as a part time job. My bowel movements are now back to 20 a day. I feel as if i am never gonna defeat this damn disease. I am not really sure if I just have UC or this is Crohns. I am just tired of this. Any help or advise would be much appreciated. I feel so lost and alone. Anyone that has had this surgery .... Please share what works for you. I am getting desperate...

This is really hard for me to write this as I am a very independant person. I have a hard time talking to anyone about this as is tends to be very embarrassing. Thanks for taking the time to read this.

 Reply posted for stephenbsmith50.

No problem whatsoever.  I'm glad to be of assistance; and even gladder to hear you're feeling a bit better!    Keep at it and remember, if you're pee is yellowish you're not drinking enough; you want it to be clear.  I know it can be a tall order; especially in the morning when you've just gone 8 hrs without drinking (that's why I drink so much OJ, water, coffee, anything I can get my hands on).  Your body needs the fluids to function properly.  Take care and keep us all posted as to how you're doing.  Kind Regards, Steve

 Reply posted for rifles96.

 I also heard that VSL#3 ( a probiotic) is good for pouchitis.

Good luck and hope you feel better soon

 Reply posted for stephenbsmith50.

Stephenbsmith,

Thanks for all the valuable information.... Sorry it has taken me so long to respond. Life has been hectic to say the least. Between work, raising kids and fighting this infection has taken it's toll on me.

I would have to agree on the dehydration being a major contributor. Keeping dehydrated has definately been a struggle in it's self. It seems that my small intestines are confused that they are now required to take over the roll of my " now missing colon." Since reading your reply, I have hit the gatorade harder and I do think that I have seen improvement versus drinking just water.

I just wanted to say "Thank You" for your interest in wanting to help. This site and ones like this have really been more benificial than the countless hours I have spent at DR's offices. We are the ones that are experiencing this and if we all pull together and share our stories and what works, there is hope of a healthy and full filled life.

God Bless and please keep in touch!

Sincerely,

Jared Hansen

 Reply posted for rifles96.

rifles96, I will send you an email separately, but I want to address your dehydration question here because it is something I take very seriously and definitely think it could be contributing to some of the symptoms you write about.  I went through a couple of bouts of dehydration before I came down with UC (in fact, I have often wondered if there was any sort of correlation there) and is something I am very aware of now.  My understanding is that the interrelated purposes of your colon are to (1) re-absorb fluid back into your body, and (2) store waste (which it is able to do after re-absorbing the fluid).

Well, your j-pouch takes care of the storage, but without a colon your body has only limited means of re-absorbing fluid (my surgeon indicated that your small intestine will learn to do this in a limited capacity over time).  So you need to make sure you ingest enough fluid to compensate.  That is why there is always a bottle of Gatorade or some sort of flavored water in our refrigerator; I drink constantly.  Diet-wise, I eat a banana and drink about 16 oz of orange juice every morning (wait gain has never been an issue) for electrolyte replacement.  At work I always have a bottle of water on my desk and refill it several times a day.  Note: water is ok to float the electrolytes that are in your body, but you need to make sure you ingest enough via fruits, juices, Gatorade or other sports drinks.  Your doctor might have some ideas as to other ways to getting the fluids your body needs.

Finally, if you are fighting pouchitis, the meds could easily be making the dehydration worse which can get you into a vicious spiral (e.g. the dehydration could easily be contributing to the pouchitis and vise-versa).  So eat your yogurt and drink your fluids!!! 

 Reply posted for stephenbsmith50.

stephenbsmith50,

Thanks for the reply. It's always nice to hear that someone who has been through the same things as you have are doing so well. I have been on flagyl and cipro for over a week now and I am starting to see improvements, until last night. Now again, I feel like I am back stepping. It has been less than a year since my j-pouch was created and I am crossing my fingers that this phase will pass. I will definately try the yogurt.... I've heard this before, but I seem to have forgotten. I am also taking a probiotic I purchased from true health ( Dr. Cutlers ). I understand that he also has I.B.D.

On a side note if you don't mind me asking.... Do you have problems keeping dehydrated? I have been going 4-7 days at a time without urinating. Now last night and this morning I started peeing blood... I think? It is a really dark red color and causing a lot of pain. Has this ever happened to you before? Also I constantly am having a throbbing pain in my j-pouch area. Sometimes it is bareable and other times I can't even stand up. My best description would be like smashing your finger... That same type of throbbing pain.

I would really like to talk with you more if you are interested. My e-mail address is rifles96@yahoo.com

 Reply posted for rifles96.

Sorry to hear about your bout with Pouchitis.    I've had my j-pouch for over 20 years now and experienced pouchitis a 2 or 3 times over the first couple of years (my surgeon indicated that was not unusual for new j-pouches).  The treatment was antibiotics (flagel?) and I, like you, found it nearly as bad as the colitis.  After the 3rd bought I vowed I'd never take the flagel again (it just made me sick to my stomach).  Now, when I get some sort of 'stomach bug' (and I use that term generically because I've haven't had any additional diagnosis of pouchitis) I just keep plenty of Immodium around, take an extra dose of Metamucil or two, and stick to a blander diet for a couple of days and whatever it is seems to go away.

The other thing that changed over that period, and something for you to consider diet-wise, is that I started eating a cup of yogurt every day for lunch (all flavors; and no, I wasn't necessarily trying to be healthy; I'm just lazy and grabbing a cup of yogurt was easier than making a lunch ).  Anyhow, I've always heard that yogurt is good for the digestive tract; something about the (good?) bacteria in it.  While I can't definitively say that had a positive impact on reducing/eliminating the pouchitis, it's just something for you to consider.

Kind Regards

 Reply posted for rifles96.

I wish that I can help from personal experience but I can't. I do have a friend who went through a few bouts of pouchitis. One bout was helped by antibiotics with the other she managed by mesalamine suppositories. I think she also was on infliximab and probiotics.