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[Walrus#9]

HI,
I am new to this all. Unfortuenlty I am not new to Crohns I have had it since I was 17(1998). I had fistulas and got phnumonia(sp?) and I was in the ICU for about a week. After I got better I did well on Asacol, 6MP, folic acid, Lomitl, However around 2006 I started having problems again. Had a BIG flare up again. I was then put on Remicade but I started feeling ill and eventually got a severe lung infection and they did a open lung biopsy b/c there were lung noddules were cancerous and they turned out not to be. So I was tekne off the Remicade and eventually through a MRI my doc said I had to have my terminal iliem removed in spring 2009. Since then I have had D a lot every day. My Gastro doc pt my on Humeria and Hyomax and both dont seem to be help. I get really bad cramps they seem to come in waves and at thier peak it feels like I am going to pass out from the pain. My doc is very stringent on pain medicine so I am taking Bentyl for those and immodium for the d. It seems like when I take all these meds though I feel horrible still bloated unconfortable but its either that or let the D go at full force.

Im sorry I am new to the forum so if I didnt make sense in my story I apologize I am jsut trying to find more people out there who knows what it is like and maybe some advise.

 

[DustyKat]

Hi Walrus and :welcome:

I'm glad you found your way here. I know there are others that suffer with similar symptoms to you. My daughter had a Right Hemicolectomy 4 years ago and she was left with short bowel syndrome. Have you tried Questran?? I know it did work for Roo but she found it too unpalatable so plans her eating around her day and over time it has become effective for her to do this, she has about 5 - 7 loose bowel motions a day. She has tried other meds like Imodium, Lomotil and Metamucil but also found they either didn't work or caused pain and bloating.

BTW your post makes perfect sense! This is a fab place with loads of support and info. Browse the forums and have a look in the food and diet section for ideas that may help with the cramping and bloating. I hope you stick around..............welcome aboard!

Take care,
Dusty

PS. Do you take any supplements like B12 and Folic Acid??

 

[Dexky]

Hey Walrus!! Are you a Beatles fan? We have no surgery experience, but many on here, like Dusty's Roo, have had similar operations. You've come to the right place. Good luck and welcome!!

 

[Walrus#9]

Hello DustyKat & Dexky(Yes,I am a HUGE Beatles fan. I guess my name gave it away) - Thank you both for the welcome. I have been looking aroudn this site and seeing what other people are dealing with and that alone is helpful to know I am not alone. I have tried Questran but it is some foul stuff, and the immodium does make me very bloated and seems to increase the cramping. I have started to eat around my day as well and if I know I am going to somewhere for a long time I gotta make sure I dont eat while I am away. I do have to have monthly injections of B12 as well. Again thank you both for the warm welcome and the support I plan on sticking around!
Sincerely,
Mike

 

[Nancy Lee]

Hello Walrus!
Just stopping by to say welcome to the forum!!
Amy questions? Ask away.
We're all in the same boat
and someone will be around to help you.

Welcoming hugs~Nancy :thumleft:

 

[rottengut91]

What's up Walrus#9:bigwave::welcome:
I too recently joined. The are many wonderful peolple her, very welcoming and compassionate. You'll find you're not alone in your struggles with this disease. As CD and the many medications affects each of us diversely, you'll also find several treatment approaches and experiences many have had with them. This place is great, wish I would have found it alot sooner.

PEACE :hippy:

 

[CDDad]

Hi Walrus,
I also had a Right Hemicolectomy a few years ago and I was never the same. My diarrhea got much worse after. If you are unaware, the Right Hemicolectomy involves removing about half the colon and ileocecal valve. The valve helps regulate the flow of stool into the colon. Without it, it flows unrestricted and also can allow too much bile salts into the colon which cause more diarrhea.

DustyKat mentioned Questran which is supposed to bind up the bile salts. It is a powder, and like Roo, I could not tolerate it (not so much the taste, but texture). It also causes bloating. But I know others on this forum take it with good results. There is also a similiar pill form called Colestid. Like Questran, it's an old cholesterol medicine but works the same way. The pills are huge and you have to take many. Also did not work for me but I could tolerate it.

What did work for me (to a degree) is low dose codeine. It was the only medicine that worked. I was taking a low dose 4-5 times a day, so I would only get up once at night with diarrhea instead of four times.

But now after my last surgery I'm in remission. Best of luck for you to get some relief.

 

[Walrus#9]

Thank you rottengut91 & Nancy for the greetings I know I wish I would have found this years ago.
Thanks CDDad for the 2 tips on meds. My doc is pretty stringent on the narcs but I can ask about the Colestid, never heard of that before.
Sometimes I wish I never had the surgery even though I would have the pain to live with which is was debilitating, but now the diarrhea is so rampant it makes it hard to go through your day w/o making sure you are close to a safe zome(Bathroom) so I tak the Imodium which makes me bloated and the cramps seem to be more potent when I take that. So I guess i picked my poison which I know was the right choice to have the surgery I just was not told about the after effects until afterwards and it was a oh by the way you might experience some diarrhea for a couple of weeks, and a whole year and a half almost later here i am still the same problem.
I had a scope in July and the GI said that everything looked good b/c in May they had to go in and at the surgery site they had to widen in out again b/c the scar tissue was starting to build and if it started to build back up again I was possibly looking another surgery so I guess I dodged a bullet for now on that.
Thanks again for everyone’s hospitality and advise it's good to find people who have been through it too.

 

[Astra]

Hiya Mike
and welcome

I love The Beatles too, and I'm from Liverpool too!
so sorry you're going thro a bad time Mike, but have to agree with Joe, codeine phosphate can reduce diarrhea and stop it in it's tracks. I was given this in hospital, it has it's drawbacks, ie dependence and constipation, but taken wisely and only when necessary, it works! A low residue diet works for me too, it always reduces frequency and urgency, I still get D, but not as painful or as much.
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[Walrus#9]

Hi Joan, Thank you for the support and encouragement. Also thanks for the advise, I will definetly check that out. Your a Beatles fan so I know you have good taste!!!
Your from Liverpool too, that is crazy I havent been there yet but I want to go there and check out Abbey Road studios as well.
Thanks again for your kind words, it really helps!

Peace and Love,
Mike

 

[Crohn's 35]

:ybiggrin:Hi Walrus, love your avatar lol. If you have diahreah , try eating unsweetened applesauce, homemade is better. Bananas help too. Yeah I know Questran takes like crap but it was better than having bm every 30 min with a sore butt. After two resections I am fine, not D but not formed.

Gonna not like this but I was NEVER a Beatles fan...or rolling stones :ytongue:

Glad you are here though, lots of information from great people!

 

[acg101]

hey Mike and welcome to our forum. as you can already see, we have many nice and knowledgeable people here that always willing to listen.
the way I controlled my D was through a strict diet, that included only binding foods (like bananas) and since I was on percs as pain meds, it also helped with the binding.
Now that I had surgery, I am in remission.

 

[Walrus#9]

Hi Pen, Thank you for the advise I love bananas I try and eat as many as possible and have been trying applesauce didnt know about the unsweetened kind though.
Thats a shame about the not liking the Beatles! illowfight:
I like the Stones too but mainly the early stuff up until they sold out in the 80's - but seriously thank you for the support and advice.

-Joan, Yeah I hope one day I can get over there and take The Magical Mysetery Tour , thats in Schauerbang and the Blackpool Lights if I am not mistaken.

-Dan - thank you and I have been finding this forum very very helpful


Mike

 

[Dippymint]

Hi Walrus #9,

I'm new too and just finding my way around, so welcome.

Having D all the time is a pain isn't it, feel for you as I know what it's like. As with lots of the people here I get numb bum a lot with spending half my life on that little white bowl!!!

Maybe we should make it an olympic sport and see who can stay pooing the longest.

Only joking!!

 

[Walrus#9]

Hi Debs,
Good one!! ecspecialy your rhyming skills, "numb bum" never heard that one before.
Yes it does suck having this, I mean "Everybody's got their dues in life to pay" to quote some Aerosmith but this disease seems ecspecially cruel given that there will periods of remission when we are completley fine and jsut when we start to feel normal again BAM! we get hit with it. Well glad I found this though I cant tell you how great it feels to be able to talk with people who know where I have been and can feel my pain literally.

and welcome to you too!

Mike

 

[Astra]

Hiya Mike

ha ha ha, no going on a Schauerbang trip from Liverpool to see Blackpool Lights with a crate of beer and Auntie Jessie for us!!
I'll take you to the 'real' Liverpool, The Cavern, Strawberry Fields, Penny Lane et al!