Help! Anyone one with ulcerative colitis and IC?

[Ginny Doll]

Hi, I have just been diagnosed with ulcerative colitis and I sure do see alot of similarities here with my IC. I had hoped it was irritable bowel syndrome instead. What do you take for ulcerative colitis and does is agree with drugs like Elmiron and neurontin? I also have reflux disease under control. Take Nexium and had the surgery that partially corrected it. Same story. Inflammation going from top to bottom. This colitis hit when I finally had IC under control. I guess I am shocked by the news. Makes me wonder if the lining of all my organs will become inflamed eventually. Any thoughts or help would be greatly appreciated. Thanks, Carolyn

[TeaselOne]

Ginny,

Me, too. I also have IBD -Crohn's-, and GERD along with IC.
Like you, I feel I am one big inflammation. Funny how no one seems to laugh when I say that...

Lately my IC hasn't been too bad; just some occassional flare-ups. However my Crohn's has been acting up lately so I feel like crap because of that. Seems like if it isn't one thing, it's another- and sometimes all at once!

So I share your pain; it gets discouraging doesn't it? Hope you are doing OK.

What are you taking for your UC? I'm currently on Asacol, and Entocort (steroid) since about 2 weeks ago to try to get things under control. Plus Elmiron, Hydroxyzine, and Sanctura for IC. Plus Aciphex for GERD. Plus Ultram for pain. Sheesh, I'm a walking drugstore!

take care,

Lynne

[Ginny Doll]

Hi Lynne, Your note was very helpful. I was prescribed something like cortosort. I forget exacrtly but i think it was a steroid. I handed the script to the pharmacist after the colonoscopy. ( I was dazed still from the procedure). It cost $450.00 for one month of it and my insurance refused to pay. My insurance will cover Asacol. So maybe he will let me try that instead. I have had to discontinue a lot of meds due to IC burning so praying that something will work.
I take Elmiron. Neurontin,Gabapentin( Pamelor) , Nexium 40 mgs, allegra , ditropan xl.
I am so sorry you have Chron's. That must be very hard.
I was able to go off oxycontin when I added the Gabapentin. Now I have IC pain rarely. But it has been a 6 year haul to get there and now the UC. UGH. I wonder too if i have Chron's. I see him in a few weeks so I'll ask. Was it diagnosed by a blood test?
Sending you hug. I hope the buck stops here and it doesn't travel elsewhere on us. Your note was so helpful and cheered me up to know I am not alone. Sending you a GIANT hug and hoping you are pain free for good and you get the UC under control. Have you ever had mono when you were younger? Thank you so much!! Carolyn

[TeaselOne]

Ginny,

Thanks- and HUGS to you too... Nice to chat with another similarly affected soul.

I was diagnosed due to the pattern of the inflammation/ulceration (patchy, unlike UC which tends to be contiguous) and the biopsies from my colonoscopy. Plus I have the extraintestinal complications of joint pain/arthritis in my hands and back, and fevers and body aches. I also had a positive ANA, and my rheumatologist believes I have Crohn's related arthritis. My sed rate actually hasn't been tested in a while but it wasn't elevated last summer when my symptoms started. Luckily my GI is going on the colonoscopy results and my symptoms, and isn't hung up on the sed rate or other markers.

I really like my GI. He is sooo nice and sympathetic, and always takes time with me, always asks at least twice if I have any other questions for him. Plus the last time I saw him he had a very nice resident with him (He practices at a teaching hospital) and he was also extremely nice, so very sympathetic, and doing his best to reassure me that there were other drugs in the arsenal we haven't tried yet. I must have seemed pretty pathetic!
They were both so nice I almost cried...

And yes, I did have mono in college. Why do you ask; do you think it is a trigger for this autoimmune stuff?
I think my Crohn's was triggered by a really nasty Campylobacter infection I had two Christmases ago; my guts haven't been the same since. (campylobacter is salmonella's evil cousin; horrible food poisoning)

take care-

Lynne

[Annie2]

Hi Ginny and Teasel,

I'm a member of the multi-inflammatory disorders club, too. My IC was under good control and I was doing quite well when I developed UC exactly one year ago. Fortunately (if there is anything "fortunate" about IBD), my UC is very mild. I am still struggling to get my UC into remission. I also had to have my gallbladder removed 5 months ago and an EGD did reveal a small hiatal hernia so I've had to deal with other digestive problems along with trying to get the UC under control.

I'm right there with you in being a walking pharmacy. I hate that, but what else can we do? I use Cortifoam and take Colazal for the UC and my gastro has just added Librax to the mix. I also take Protonix for the reflux and for IC I take Elmiron and Elavil. I took Detrol LA for quite awhile after developing IC, but was able to stop it when the Elmiron fully kicked in.

As a consequence of all the meds, I do also have problems with dry eyes and mouth. I can only wear my contacts for short periods now and have to use a prescription toothpaste to try and combat the increased risk of dental decay because of the dry mouth. Just last week I had to have a crown replaced because of decay beginning under the older crown (a big ouch in the pocketbook!).

Sending lots of hugs to both of you! :grouphug:

[Ginny Doll]

Ginny,

Thanks- and HUGS to you too... Nice to chat with another similarly affected soul.

I was diagnosed due to the pattern of the inflammation/ulceration (patchy, unlike UC which tends to be contiguous) and the biopsies from my colonoscopy. Plus I have the extraintestinal complications of joint pain/arthritis in my hands and back, and fevers and body aches. I also had a positive ANA, and my rheumatologist believes I have Crohn's related arthritis. My sed rate actually hasn't been tested in a while but it wasn't elevated last summer when my symptoms started. Luckily my GI is going on the colonoscopy results and my symptoms, and isn't hung up on the sed rate or other markers.

I really like my GI. He is sooo nice and sympathetic, and always takes time with me, always asks at least twice if I have any other questions for him. Plus the last time I saw him he had a very nice resident with him (He practices at a teaching hospital) and he was also extremely nice, so very sympathetic, and doing his best to reassure me that there were other drugs in the arsenal we haven't tried yet. I must have seemed pretty pathetic!
They were both so nice I almost cried...

And yes, I did have mono in college. Why do you ask; do you think it is a trigger for this autoimmune stuff?
I think my Crohn's was triggered by a really nasty Campylobacter infection I had two Christmases ago; my guts haven't been the same since. (campylobacter is salmonella's evil cousin; horrible food poisoning)

take care-

Lynne
Hi Lynne, I have had similar problems that you have had. Mono and a bacterial infection I got in Cancun called shigella. I swear there is some connection here with current problems. I just picked up some asacol and hoping it agrees with me. I am certain he will add something else next time I go in. Is teh Entecort a spray? I so hope you are better fast!! You have helped me so much!! Carolyn

[Ginny Doll]

Hi Ginny and Teasel,

I'm a member of the multi-inflammatory disorders club, too. My IC was under good control and I was doing quite well when I developed UC exactly one year ago. Fortunately (if there is anything "fortunate" about IBD), my UC is very mild. I am still struggling to get my UC into remission. I also had to have my gallbladder removed 5 months ago and an EGD did reveal a small hiatal hernia so I've had to deal with other digestive problems along with trying to get the UC under control.

I'm right there with you in being a walking pharmacy. I hate that, but what else can we do? I use Cortifoam and take Colazal for the UC and my gastro has just added Librax to the mix. I also take Protonix for the reflux and for IC I take Elmiron and Elavil. I took Detrol LA for quite awhile after developing IC, but was able to stop it when the Elmiron fully kicked in.

As a consequence of all the meds, I do also have problems with dry eyes and mouth. I can only wear my contacts for short periods now and have to use a prescription toothpaste to try and combat the increased risk of dental decay because of the dry mouth. Just last week I had to have a crown replaced because of decay beginning under the older crown (a big ouch in the pocketbook!).

Sending lots of hugs to both of you! :grouphug:
Hi Annie, Wow I just had that same under the crown decay and replacement. What prescription toohpaste do you use? I amgoing to see if any of thosemeds are on my list of what's covered. Idon't think they ae. Thanks for thehugs! Back at you. I hope the UC completely settles down. Surgery corrected the hiatal hernia I had so food wasn't sliding back up. The heartburn was then able to be controlled with Nexium but no luck with Nexium PRIOR to the surgery. The Asacol feels like lead weight. UGH!! Thanks for the post. Yoursupport today has meant so much. Thanks! Carolyn

[TeaselOne]

Entocort is a steroid that you take in pill form. However, it is enterically coated so that it is supposed to be absorbed only in the end of the small intestine and large intestine. This helps avoid many of the nasty side effects of regular predisone. Of course, this also means it doesn't work quite as quickly as prednisone... It's been two weeks and I don't feel any better yet but I heard from another Crohn's patient that it can take several weeks up to 3 months for full effect.
I would hope I feel some improvement soon; I seen the GI in 3 weeks and if it is not helping by then I suspect we will go to plan B (actually, maybe plan C by now) which is an immune suppresant called 6MP (mercaptopurine). If we do end up using 6MP, I wonder if it will affect my IC? Hopefully in a good way...

take care,

Lynne

[Annie2]

Carolyn, my dentist prescribed Prevident Rx toothpaste for me. It helps, but obviously doesn't prevent everything since some decay got going while I was using it. It's so discouraging to have to have crowns replaced, isn't it?

Lynne, I certainly hope the Entocort will work for you! I am aware of 6MP, but haven't tried it and haven't done any research or read anything about it. Since it is an immunosuppressive agent, I also wonder what effect it might have on IC. GOOD QUESTION. There have been a few small studies done on another immunosuppressive, Cyclosporin-A. Those studies showed that when low doses of Cyclosporin-A were given to IC patients, a very high percentage of patients had an elimination of (or decline in) IC symptoms. IC Lori here on the boards is about to begin trying this med for her IC. There has been a lot of discussion about this recently here on the boards so you might want to search and read those discussions. I don't know if any studies have been done on 6MP in IC patients, but I think that would be a very good question to ask our gastros. A couple of weeks ago I saw my gastro and asked him about trying Cyclosporin-A for my IC and whether or not it would be appropriate for me to try with my UC. All I could get him to say was that, in my case, Cyclosporin-A was totally contraindicated. He did not give me a reason why it was contraindicated for me. My guess, and it is just my personal guess, is that Cyc-A has been shown to increase the chance of cancer in a few patients and I have a horrible family history of digestive system cancers. Have you done any research on 6MP? I would be interested in learning more about it (and possible side effects of the drug along with contraindications for it's use).

[Katrina]

Very sorry about your UC diagnosis. My actual diagnosis at the moment is ulcerative pouchitis...since I already lost my colon to UC but bascially still have the disease (don't mean to scare you I am a very very unique case)

My current treatment plan is alternating between Cipro and Flagyl (antibiotics) every week, high dose of asacol, and a probiotic called VSL#3. No matter how severe your UC is I highly suggest taking a probiotic....I have never had an alternative treatment make such a major, major difference in things for me.

I take elmiron and Neurontin with my meds and there has never been a problem.

Doctors want to avoid steroids in me since I am young, thin, post hysterectomy, not very active....and basically already at high risk of ostioporosis....they also want to avoid immunosuppressives since there is already plenty of evidence that my immune system is weak.

I tottally agree that their is a lot of similaries in these illnesses and when talking to doctors I will often make a comparison since I know so much more about IC it helps me to fully understand them.


If I can help you anymore let me know......loving how much the probiotic has helped!!!!! (hoping it can get me off of some of these other meds :)

[Ginny Doll]

Very sorry about your UC diagnosis. My actual diagnosis at the moment is ulcerative pouchitis...since I already lost my colon to UC but bascially still have the disease (don't mean to scare you I am a very very unique case)

My current treatment plan is alternating between Cipro and Flagyl (antibiotics) every week, high dose of asacol, and a probiotic called VSL#3. No matter how severe your UC is I highly suggest taking a probiotic....I have never had an alternative treatment make such a major, major difference in things for me.

I take elmiron and Neurontin with my meds and there has never been a problem.

Doctors want to avoid steroids in me since I am young, thin, post hysterectomy, not very active....and basically already at high risk of ostioporosis....they also want to avoid immunosuppressives since there is already plenty of evidence that my immune system is weak.

I tottally agree that their is a lot of similaries in these illnesses and when talking to doctors I will often make a comparison since I know so much more about IC it helps me to fully understand them.


If I can help you anymore let me know......loving how much the probiotic has helped!!!!! (hoping it can get me off of some of these other meds :)
Katrina, this has been very enlightening. I am so sorry you lost your colon and have pouchitis. I know about it and it must be very hard to keep under control. a blancing act.I just fear that when I get the UC under control the inflammation will just find another place to migrate to and aggravate. I am hoping that maybe the inflammation can just be kept at bay long enough in the colon so that the lining of other organs won't be affected. Please tell me where I can get the probiotics. A health food store? Did the Asacol cause constipation in you? I was constipatated my whole life then suddenly the runs with UC. I am glad you see a connection here linking these conditions. I the runs under control now but wondering if I will go the other extreme. God I had a fissure that lasted months. UGH! Thanks for any help! Hugs and thanks! Carolyn

[Ginny Doll]

Katrina, I think the doc will do the same with me.. avoid steroids as I already have osteo. The Fosamax has helped me though. Saw progress after 3 years.
Boy this is no fun! I feel like we are too young for this stuff! I thought old ladies got osteo! Thanks again, Carolyn

[Katrina]

The VSL#3 which has been researched for UC is only available online and isn't very cheap.
http://www.ic-network.com/forum/showthread.php?t=24978&goto=newpost.yeast in one of my posts at this thread I compare other probiotics as well....the higher the bacteria amount the better.....I recommend buying one cold so a health food store that sells a brand in from the fridge is a good choice.

Good luck to you.....for now I am hoping the inflammation won't go anywhere else besides these two storage organs....not sure how many more health problems this body can take.

Always had constipation....I wonder if the pelvic muscles don't play a part in putting us at high risks for these things??? Just brainstorming "outloud". :grouphug:

[Ginny Doll]

Great article. I never thought much about yeast as I seldom have an infection but I went though a period of vulvadynia when IC first struck. It wasn't fun and lasted a month or so. You gave me alot to think about. I appreciate your insight. Thanks to all who posted today. I will sleep better tonight after all this support. Hugs, Carolyn

[purplekris]

I just had a colonoscpoy and they said proctitis, I go next week to hear the rest of the story. I also still have my ovaries and i swear sometimes the mood swings are worse since the IC meds, even though its only a mini period from the hysterectomy. I had mono in high school, hmmm.... I also have had more yeast infections since the Elmiron than my whole life I only had 2 during pregnancy. When I read about the IC swelly belly, now i see it as an IBS symptom too. No wonder i feel like my body is going downhill. I have not beenn able to bring myself to do the IC diet as i live on caffiene, each time i read the list for both 'conditions' it makes me cry for days. Where do you find the strength to commit and then how do I cook for my family separately? my daughters both have constipation, 1 on mirilax for 4 years, so we try to eat for the other type of bowel health. sorry to be ranting, i just got time to go online and am ready to crash to sleep. Oh yeah, I read the IBS also interrupts sleep as much as the IC night time trips. yippee and I thought it was all just a matter of habit!:confused:

[Ginny Doll]

Hi, I am so sorry to hear you have so many things going on at once.I hope the doc's news isn't that serious. I find it very interesting that you had Mono too in high school. I swear that illness opened the door to a lousy immune system for me. I wonder how many Ic'ers had mono at one time. Wouldn't it be unreal if that illness was once common to most of us.
I have to tell you that the different foods thing doesn't last forever. As you get better the food choices change. For me it was about a year of a serious IC diet but after that I was able to tolerate more foods and now most all.

I do think your caffeine habit needs re-thinking. . For me coffee was like pouring salt on a wound. Even now it creates havoc for me after 6 years. I can have a cup of coffee maybe once a month. That's it. The rest of the time it is water only. I drink bottled or Brita whatever is handy. I find that by watching what i drink, I can eat more foods. My family ate most of what i ate back then but they had the sauces etc while i ate things plain.
Things improve with IC . Treating my colon problem has actually made my bladder even better.Take care, Sending you a hug! Carolyn

[purplekris]

Thanks for the reply, it is amazing that i gave up coffee almost exclusively during my 'conception decade' I swear I was following that what to eat when your expecting diet which seemed so healthy. If I look at it now, I bet most of it is on the bad list. I have been trying to do the water thing, but I think I will transition first to iced tea.

There is a show on my PBS tonight of some natural health ultimate secret, which maybe i will tape. it's a good and bad thing to do the internet research; sometimes I get so overwhelmed. But it's also nice to 'meet' others who have the same experiences so i don't totally feel alone in this craziness. Thanks

[AshleyM]

(((BIG HUGS))) to you, and I am so sorry that you are battling UC and IC. I am another woman who lost my colon to Ulcerative Colitis and pre-cancerous cells in my colon, but I had about a year that I had both UC and bladder problems. (I have not been diagnosed with IC, because I have been too afraid to get the test done to diagnose it...I am such a big chicken!!) I also believe that UC and IC might be somewhat related. I figure that if I had ulcers in my colon, that I probably have ulcers in my bladder as well. Don't let the loss of my colon worry you, I believe that Katrina and I are rare cases!! I had UC for 21 years that just never healed. I have so many family members who have UC and Crohns, and they've all responded relatively well to medication. And I've done really well with my J-Pouch, so I'm not missing my colon these days!! It's good to finally be pain free. Now if I could only get my bladder pain free, I'd be doing GREAT!! I am doing better now that I'm following the IC-Diet and I've lost some weight. (I read in the newspaper that weight can affect an IC bladder...I had no idea that was a factor, but I guess so!!) I need to lose about 40 more pounds, UGH!! But the 26 I've lost so far seem to make a difference.

If there's anything I can help you with about UC, please feel free to PM me!! As I said, I had it 21 years before my surgery to remove it in 2004. I'm not sure if I have IC, but I think I probably do :( I've had bladder problems since 2003 after a surgery for an ectopic pregnancy. I am so happy to have found this site!! It has helped me so much, and I hope it will help you, too!!

[Ginny]

I was diagnosed with Ulcerative Colititis when I was 12 years old. 20 years later I found out I had celiac. I am sure the UC was caused by the celiac. Have you looked into celiac? I believe there are a lot of people out there that have it and don't know it. They are misdiagnosed with IBS.

Ginny

[purplekris]

the Gi guy said the biopsies were not normal, but no bad, perhaps it is Chrohns in remission. the definite is the lower proctosis ulcers, so they started me on pentasa? i'm allergic to sulfa so i guess its an alternate med. And now i have to do a barium dye test? My gyn was not happy to hear this news, but he put me back on the nortyptilene to work with the Elmiron, and added clomozapem (SP?) something int he valium family to help me sleep. I slept throught he night the first time ever in my known life. Of course, the first time my 6 yr old starts sleepwalking- luckily me heavy sleeping hubby actually heard her. So i'm cutting the pill in half, I can't shirk the responsibiliy to be aware during the noght. Even my coworkers kept asking me if something was wrong, that I looked out of it, and was weaving whle walking.

The mainthing i hate taking pills and now it's 4 moring, 4 miday, and 6 at night. My friend's sister sells pillpaks which have an alarm- but they're made for the skinny BCP packs. I had to tell my Boss why I've been leaving work early for dr appts, so he would not worry that I was out doing interviews to leave him. So far no Diet restrictions but I just know it's coming boo hoo. ANyone ever try aloe? thanks for listening:confused:

[Katrina]

yes....I take aloe vera everyday.

I don't like those barium dye tests :grouphug:

Hope things work out ok :grouphug:

[darlene]

Please add me to the multiple inflammatory disease club. I have IC, vulvodynia. Crohn's disease with complications, (severe wrist and hand pain.) I am also diabetic, which keeps diet very complicated.

[Jan102]

Hi, I just read a comment you had made about taking Mercaptopurine. Probably a few years back for you now. Was just wondering how it affected your IC?

I was recently prescribed Entocort and mercaptopurine for my chrons. (I have IC as well). However, I felt quite sick taking the mercaptopurine. I had high temperatures, pain in my lower back and stomach and felt terrible. It also seemed to really stir up my bladder.

Would be really interested to hear how you got on or any idea's you have. Many thanks
Janice

[TeaselOne]

Jan,

Not sure if you meant me - but I think I'm the only one who mentioned it in this post.

I had to stop the mercaptopurine because it negatively affected my liver.
I ended up on steroids - which helped my guts but gave me terrible gastritis- not to mention hyping me up like crazy - not fun at all.

Everything we tried did not help or made something worse. So I ended up stopping everything except Nexium (on my GI's recommendation), going to a new gyno (as my periods were AWFUL AWFUL and made everything else so much worse as it increased my symptoms -gut and IC- before, during, and after my period - so 3 weeks of every month!) and going to pain management.

The new gyno prescribed Yasmin continuously - I skip the filler pills - so I never get my period. It also has a nice side effect of lowering your BP- which was good as mine was getting high (most likely due to the pain and stress) and other BC pills can raise your BP.

The pain management person put me on a long-acting narcotic ( I had been taking a powerful but short-acting narcotic- so the pain would not be under control all the time) and recommended accupuncture and fish oil pills.

The accupuncture guy was great, and researched how best to treat IC and Crohn's with accupuncture. He also gave me some Chinese herbs to take.
I started to feel somewhat better pretty quickly, but it took most of the fall to get back to normal. I continued going once a week for a year and now only go occasionally.

I was able to cut way back on the long-acting narcotic but can't stop it completely or my gut cramping and diarrhea start to come back. I still take the Yasmin and the Nexium but that is it.

And I feel absolutely perfect most of the time. I do have a break-through period about twice a year, and that is still pretty miserable- but that's a total of two weeks a year instead of almost 3 weeks a month!!!! My IC acts up occasionally; usually when I am extremely stressed or tired, but mostly I have no issues with IC symptoms.

So that's my story of what worked for me. Sometimes I can't believe how sick I used to be but then I read my symptom diary and it all comes back.

I hope everyone else can achieve similar results. Go for the pain management and accupuncture- it can work wonders!

Thinking of you all-

Lynn

[bladder]

I had the colonoscopy and they could not decide if it is crohns or ulcerative colitis. For now it is non specifice ulcerative bowel. They are treating me with a low dose of salofalk suppositories. I feel nausiated. The good thing is that the pain in the lower rectal area is much less. It is helping with the inflammation. I go for a barium xray next week. IC and all its related conditions are so complicated. Can't it just be one thing that we have to deal with...not something new every time we turn a corner. :confused: A pill to stop all and any inflamation from the belly button down would be so nice. LOL

[Jan102]

Hi Lynn
Thanks for replying to my post about mercaptopurine. It was interesting hearing about your condition. Since taking the mercaptopurine my bladder has been terrible. I am also still taking entocort or budesonide so it may be that that is aggrivating my IC. All I know that before I started the treatment my bladder and bowel were heaps better.

I think they have also affected something else internally because my white cell blood count keeps dropping.

I'm pleased to hear that you are so well now. Thats great news.

I need to research something to do with my bladder as it is really affecting my life alot at present. I can't take long car trips and sleeping is pretty bad. I take Gabapentin, but that doesn't seem to resolve the pain either.

Looking forward to improving
regards

Janice