Interstitial Cystitis and Crohns

[NewRoad]

Hello everyone. Yesterday I was diagnosed with Interstitial Cystitis, just two short months after being diagnosed with Crohns. Anyone else have that? The two seem to irritate eachother as inflamation and the related pain/stress is bad for both.

So I ended up in the ER (again) with a severe Crohns flare AND horrible bladder pain. That was enough to get me off the river 'Denial' and realize I must get rid of the coffee and tea. Oh, my, the sorrow! I thought I could get away with decaf but maybe not.. any advice would be greatly appreciated as this is all so new to me!

 

[Grumbletum]

Hello NewRoad. I haven't suffered from IC, but I did have a bowel to bladder fistula and had horrible bladder pain, urgency and frequency for two years. After some trial and error, I realised too that I would have to give up my beloved coffee and that even decaff aggravates. Goes for tea too. I tend to stick to Redbush tea these days.
Even in medication and surgery induced remission, caffeine causes me problems. I don't know if it will help or not, but i found too that too much refined sugar and foods with a lot of yeast also aggravated my poor inflamed bladder,

 

[Ihurt]

Hi there,

First off I am so sorry you are suffering with crohns and IC as well. I have IC, I was diagnosed with IC back in 2006.

Has your doctor given you any treatment for the IC. The first drug they usually give for IC is a drug called elmiron. Elmiron works for like 30% of the people who take it. Unfortunately it did not work for me. Also there is a drug
called elavil which is an antidepressant, but given in low doses it can help with the pain of IC. There is also bladder instillations where you inject meds into the bladder via a catheter. I did these instillations using the following meds ( lidocaine, heperin, and saline solution). It did help me some with the pain, but I ended up getting bad UTI's due to the cathererization so I had to stop doing them. I would not reccomend doing them if you are having diarhea though as the risk of UTI is greater.

The only thing that helped me is being put on long term antibiotics. It helped me greatly. I believe IC is caused by a bacteria, at least in my case. I suffered for 3 years with it( I mean I literally wanted to die the pain was so severe). It was the worst pain I have ever felt in my life. I feel so bad for you as I know how horrible it is...

A lot of women who have IC do find different things that help them. WHat I have found is that everyone if different with this disease and how it effects them. There are quite a few meds they use to treat it or help with the pain. Here is a list of the ones they use ( elmiron, elavil low dose, lyrica, hydroxyzine, bladder instillations, different herbal teas like marshmellow root, pain meds when pain is severe, and some have found that the med singulair can help). It will be trial and error, you will have to see what works for you. I did not have much luck with a lot of the meds due to me also having MCS(multiple chemical sensitivity) I have reactions to most all meds.

Also a heating pad may help if applied to the lower pelvic area. Some prefer cold though and in that case you can use an ice pack.( 20 minutes on and 20 minutes off). Again I am so sorry you are dealing with this. If you dont mind me asking, what set your IC off? Did you by chance have a bladder infection first???








QUOTE=NewRoad;528681]Hello everyone. Yesterday I was diagnosed with Interstitial Cystitis, just two short months after being diagnosed with Crohns. Anyone else have that? The two seem to irritate eachother as inflamation and the related pain/stress is bad for both.

So I ended up in the ER (again) with a severe Crohns flare AND horrible bladder pain. That was enough to get me off the river 'Denial' and realize I must get rid of the coffee and tea. Oh, my, the sorrow! I thought I could get away with decaf but maybe not.. any advice would be greatly appreciated as this is all so new to me![/QUOTE]

 

[NewRoad]

Ihurt, thank you for your reply. First, I'm not sure what set off the IC, I had a Historectomy 9 years ago, and started having some symptoms shortly after, then this year I had what the doctors called UTI about 6 times, so I don't know what caused the issue. If it's genetic, my niece also has it, along with 4 of us in the fam that has some form of Crohns.

I am on Elmiron now, it's discouraging to hear that it only works in about 30% of the persons taking it.. it's SO expensive, I have no insurance so the med list is hitting my pocketbook hard. I've been out of work since the first of September this year so things are getting a little tough.. They also prescribed vaginal Valium, it's a suppository and works pretty well to stop the spasms and nagging pain. It also makes me dopey and sleepy, but I guess that's better than screaming pain!

I've taken so many rounds of antibiotics this year that the doc thinks I've developed an immunity to them. Oh, and I had Shingles last Christmas, oh my that was painful! It feels like my body is attacking itself and trying to do me in sometimes. I have modified my diet, no more coffee, no more soda's, no more sugar, (well, ok, maybe a little sugar , chocolate is out, I'm on a big learning curve here diet wise. I was an over the road truck driver but still ate fairly healthy..

I had a love affair with my heating pad last week, LOL, and my dog seems to know when I hurt as he cuddles up next to my belly when it hurts. He's a little heating pad too. There is a forum for IC also, www.ic-network.com/forum if you want to check it out.

 

[Ihurt]

Hey Newroad,

Yes, I am also a member of the ICnetwork. They are great and can offer a bunch of advise. Not sure if your doctor mentioned it or not, but you have to be on elmiron for at least 4 to 6 months before you know if it is going work or not. That is what I was told. I could not continue it due to side effects( but I felt worse while on it anyhow). Hopefully it works for you..

From what you are saying, It sounds like your IC may be infection as well. Your story sounds a bit like mine. I got a UTI one day and BAM, it like never went away. After suffering for like 3 years I did end up with a nasty UTI that would not go away. I had it for like 6 months. I then was put on high doses of kelfex for like 6 weeks. My bladder got better( IC too). My uro then decided I should stay on the low dose keflex to keep the infection at bay. I do not like being on an antibitoic so long, even if it is low dose. I mean I know antibiotics can really mess up the body(gut). I also take high doses of probitoics every day. I have been for years though. Are you on probiotics? This can help with the intestines and the bladder.

Oh, I have a friend who also had a hysterectomy. She also has IC. She said she was using estrace cream in the vagina and this has helped her lessen the UTI's she was getting. Just a thought..

Yikes, shingles is awful. My mom had them. Said it was sooo painful! I am sorry you are having all this throw at you. I am glad the vaginal valium is helping some. That is good.

With your IC, is your issue more pain or more so frequency? If frequency is your issue like where you have to pee a lot( like 30 or more times a day), then there is a treatment called the interstim. It is a device they place in your lower back. I know another IC woman who has this, infact she is going in tomorrow to have hers replaced( she has had it for 10 years). It does help her some. I went to a consult to see about it, but the surgeon said that he does not recommend it if your main issue is pain. He said the interstim works for the frequency issue, but Not so much for pain. Not sure if you ever heard of it before, just thought I would let ya know.


Oh I also Looove my heating pad!! ( my best friend really!). Oohh, I use to have a dog, he was a dachshund. He passed away April 8th of 2011. I miss him soo much! He use to do like your dog does, he would lay against my belly and he would be like my heating pad too . Yep, I miss my little guy. I know I would feel so bad some days and he would always find a way to make me smile no matter what!!

I can totally understand why you cannot work at your job now. I mean I could not imagine being an off road trucker and having crohns and IC! ughhh. I have not been able to work in the last 8 years. I got sick back in 2003. I have not been dx with crohns, I am still trying to work with my gastro doc. I do have a lot of other health issues though ( IC, intetsinal dysmotility, heart mur mur( grad 1 so not bad), fibromyalgia, possible connective tissue disease, multiple chemical sensitivities, supposed IBS, but not sure myself, still trying to figure it out, and CFS(chronic fatugue syndrome). It really sucks..

Again, I am so sorry you are dealing with all this. I hope you can can at least get to a point where you are at least somewhat pain free and can function...

Ihurt, thank you for your reply. First, I'm not sure what set off the IC, I had a Historectomy 9 years ago, and started having some symptoms shortly after, then this year I had what the doctors called UTI about 6 times, so I don't know what caused the issue. If it's genetic, my niece also has it, along with 4 of us in the fam that has some form of Crohns.

I am on Elmiron now, it's discouraging to hear that it only works in about 30% of the persons taking it.. it's SO expensive, I have no insurance so the med list is hitting my pocketbook hard. I've been out of work since the first of September this year so things are getting a little tough.. They also prescribed vaginal Valium, it's a suppository and works pretty well to stop the spasms and nagging pain. It also makes me dopey and sleepy, but I guess that's better than screaming pain!

I've taken so many rounds of antibiotics this year that the doc thinks I've developed an immunity to them. Oh, and I had Shingles last Christmas, oh my that was painful! It feels like my body is attacking itself and trying to do me in sometimes. I have modified my diet, no more coffee, no more soda's, no more sugar, (well, ok, maybe a little sugar , chocolate is out, I'm on a big learning curve here diet wise. I was an over the road truck driver but still ate fairly healthy..

I had a love affair with my heating pad last week, LOL, and my dog seems to know when I hurt as he cuddles up next to my belly when it hurts. He's a little heating pad too. There is a forum for IC also, www.ic-network.com/forum if you want to check it out.