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Naive about Crohn's - Can't make it to the bathroom & so much to learn

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Crohn's Disease
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Posted 5/5/2009 4:35 PM (GMT 0)
Hi!  I am fairly new to this forum and I have a lot of questions.  I have MS and Crohn's and I think I have been very naive about my Crohn's.  I think because I have the best Neurologist for my MS that has always answered everything I asked and even things I didn't know to ask that I have neglected my Crohn's.  I have moved from one doctor to another because I can't seem to get anyone help me or answer my question.  After reading a lot on in this forum I have found I know nothing about Crohn's.  I was diagnosed in 2003 and have C-ton tubes in my rectal area for drainage.  Other than that I had some stomach pains every once in a while and some diarrhea.  I was on Immuran for a while and then decided I wanted to have a baby so I went off all my medications (just found out at the Cleveland Clinic that I didn't need to go off Immuran while pregnant - my doctor never told me that).  The end of last year I started having more and more stomach pains and more and more diarrhea.  My biggest issue is actually making it to a bathroom in time.  I hate the ride into work (which only takes me 15 minutes) because I usually have to find somewhere to stop (praying I make it).  Do other people have this issue?  My last colonoscopy and scan show I have disease pretty much through my whole system and medication are not working to help get it under control (I can't take most Crohn's meds because of my MS).  My doctor told me that Tysabri is pretty much my last resort  but I am so afraid of the PML issue.  I found some information online about a drug called LDN.  Anyone have good results with that?  I have never looked at diets as more than one doctor has told me you can't control Crohn's with diet - that you just have to be aware of things that effect you.  Any information or experiences anyone wants to share with me is greatly appreciated.
Posted 5/5/2009 6:09 PM (GMT 0)
Hi New person welcome to HW there is a thread already for you all about the MEDS for crohns disease search back i think it was called MED questions check it out? Jenn
Posted 5/5/2009 7:43 PM (GMT 0)
I think some members responded to your LDN questions here:

https://www.healingwell.com/community/default.aspx?f=17&m=1461533

Posted 5/5/2009 8:34 PM (GMT 0)
What kind of "insurance" do you wear down there? Sometimes just knowing you have some backup coverage in your pants helps you kill the anxiety.
Posted 5/5/2009 11:01 PM (GMT 0)
Does the MS eliminate the TNF alpha blockers - Remicade, Humira and Cimzia? Tysabri is showing refief for a few of the forum members. The good side to that is it would treat both. I'm sorry you're in this spot - what a tough situation. It's so hard to be so sick and not be able to receive help from the available meds.
Posted 5/5/2009 11:40 PM (GMT 0)
In terms of making it to work without having an accident, here are a few things you might like to think about:
* in some places they give a taxi card to people who have trouble using public transport. I have one; it gives me half-price taxi transportation and means I can go door-to-door, with a lot less stress on joints and bowel.
* you might be able to use something like Buscopan or Imodium to diminish your cramps and d. Asd your doctor about this.
* as others have suggested, a pad or adult nappy might help
* do you *have* to work? Maybe you can take some sick leave, or get on the disability pension
* can you work from home, or find a job closer to home?
* one of our members, pb4, has a van with a toiilet in the back, so she can avoid some of the problems you describe. Perhaps you could get a different car, and modify it as she has.

Just some ideas; hope they help,

Ivy.
Posted 5/6/2009 12:50 AM (GMT 0)
ps. If you click on the "new meds thread" link in my signature, you'll find a list of threads where members have shared their experiences on certain medications. You should find some good discussions of LDN and Tysabri there.
Posted 6/7/2009 1:27 AM (GMT 0)
Wow! You have alot to deal with!
I'm 42 and was diagnosed with Crohnes 2005. My brother (15 months younger) has MS! Good Genes huh? lol... My brother was diagnosed with MS in 1994 now he's 39. He is completley wheelchair bound and on 100% disability through the Military....Thank the Lord! He doesn't take any med's just BEE-STINGS...works somewhat for him.
I am in my 3rd year of disability appeals for my Crohnes. I had a large re-section in my small intestine and have to use the bathroom 6-20 times a day depending. I take Imuran and others med's depending on the day, hour, month..yadah
Anyway, I knew so much about MS because of my brother... that when I was diagnosed with CD ....whew..let's just say it took me a good YEAR to wrap my brain around it! Most auto-immune's are similar. I've also been told they come in two's.
Lucky us!
My advice to you is ....FILE for disability and/or try to do something at home! The disability claims are so far behind now that it takes years and a lawyer! This is all due to the military people claiming now.
Also, My Doctor told me that while taking Imuran I had to flush the toilet 3 times around anyone who is pregnant because it can cause brith defects....I didn't know you could take it while you were pregnant..???

I am originally from Michigan. I moved to Minnesota 6 years ago. My brother is still in Michigan and we visit him often. We're trying to get him moved to the VA hospital here....it's all very difficult.
We are from the Kazoo/BC area. My Gastro Dr's name was Dr. Falk. He was excellent....kinda far away from you but anyway.. I thought I'd mention it.
I think you'll find this web-site awesome! Great Info when you need it
Take Care
Posted 6/7/2009 8:52 PM (GMT 0)
Hi and welcome to this group, I am using LDN since 2 years, and my Crohns has considerably calmed down. I happen to use another forum where everybody is using LDN, and at that group, there is a LOT of experienced people with MS that is using LDN. There's a few doctors and pharmacists regularly visiting that group and now and then new medical staff and doctors register to get members to learn more about LDN. You may want to read a bit more about LDN before you register to participate in that group, you don't have to ask anything or tell the group that you are there, you are able to lurk, read and leave the group if you find out that LDN is not an option. I myself lurked there for a while before I asked my first questions. I never forget that I did so. They have a lot of experience and they are so including everyone. I have written about LDN in the link that EMoM gave you a few posts ago. I am sorry to read that you're having such a difficult time, and I hope that you'll find sometihing that will suit you. There are a few thing that is important: try to find some good probiotics. Maybe find out how to make your own home made yogurt that will contain billions of good bacteria. Most of us will benefit from that, and often calm down the diarrhea. Take D vitamin every day, it's good for both MS and Crohns. 10 000 International units is ok to take. That is like a tablespoon (5 ml) of fish liver oil, which contains most D vitamin. Take care!! :-)
Posted 6/8/2009 3:49 AM (GMT 0)
I just wanted to comment on the 'diet's don't make a difference' bit that your doctors have told you.

I think this is complete bull.

This is a gastrointestinal disorder, and your gastrointestinal tract comes into contact with food every single day. The two are inextricably linked like it or not.
There are foods that are proven to cause inflammation and foods that are proven to prevent it. I have greatly reduced my symptoms by being careful with diet, and I notice that when I slip my symptoms become worse.
I really think you should reevaluate your doctors' statements regarding diet...

Also, try looking into probiotics. My GI and several others' prescribed one called Align which makes a very big difference.

Please, don't ignore what you eat. The few people I have heard who have done that ended up cutting piece by piece away from surgery until there was nothing left. And you will feel miserable...
That's like saying an upset stomach and/or heart burn have nothing to do with what any normal person has eaten.

Complete nonsense.
Posted 6/8/2009 2:18 PM (GMT 0)
Have you tried a gluten free diet?  I am going thru a lot of the IBS symptoms, my mother has been diagnosed with Chrohns since the earlier 80's and I have a few aunts with Lupus.  I was just recently diagnosed as celiac disease which is a gluten intolerance.  I was totally amazed what conditions are linked to gluten intolerance and celiac disease.

Posted 6/8/2009 2:41 PM (GMT 0)
I agree, and I don't even have celiac disease. Staying away from gluten, sugar, junky foods, etc. has helped. Keeping away from high lactose dairy may as well. And I have noticed digestive enzymes before more 'complex' meals helps keep my stomach feeling better.
Posted 6/8/2009 2:41 PM (GMT 0)
But also realize that you might not be gluten intolerant with crohns. Diet is not an end all be all. But realize that whatever you eat is going over the sores you have in your intestines. So being aware of what you eat (like stuff that irritates the gut, i.e. fresh greens, chips, etc) is something to think about as well. I want to assure that you are not along in having hard time making it even 15 mins w/o a bathroom. I am curious about what they said about some crohns meds being off limits? Because I thought at least some of them where the same?
Posted 9/14/2009 6:18 PM (GMT 0)

Hello Crohn's and MS:

 

 

I wanted to write you because I felt compelled to.   I have been Dx with MS for 11yrs, but am sure I have been living with it for 17yrs.  I am now 34yrs, and am going to have my first appointment with a gastro-neurologist to discuss my symptoms, which my Family Dr thinks the symptoms are probably either crohn's or collits.  I am having anxiety over this, as I am now at home full time due to the MS becoming too disabling to work full time.  The urgent trips to the bathroom, and the opps, and just making it in time has not been helpful either.  So, with that being said, in one of your first posts, you stated that you are having a difficult time with remembering names, etc.  Well, what I just found out this year is that, this part of MS.  Welcome to the world they do not always share with us.  I did a lot of research and found a wonderful writer of two books, who also is living with MS.  His name is Jeffrey Gingold and his first book was reaffirming that I was not going crazy, that this "stuff" was actually happening to other people.  I lost my job as a Social Worker, and he had to give up his job as an attorney.  His first book is called, "Facing the Cognitive Challenges of Multiple Sclerosis", and his second book is called "Mental Sharpening Stones", which also has exerpts from other individuals living with MS, and professionals.  I had the opportunity to listen to him speak at a local MS Society Workshop, and it helped empower me, and reinforce the realization that I am not going crazy - this is just one of the many unwanted symptoms that reminds us that we do indeed have MS.  However, do not let it ruin us, learn to try to overcome and deal with the "road bumps/blocks", and some helpful ideas are in his second book.

 

Now, having to go through a possible new Dx, I am stronger, but as a single mom with two young, healthy, active school aged boys, I feel guilty as well.  I can not go out and do the fun things I want to.  I can not go on the fun rides at the park, waterpark, and avoid Great America.  For me, I keep faith, and know I have a guardian angel.  I hope and pray every day for cures, and am glad that now, we can continue stem cell research.  I think that when doors close and things happen, they do indeed happen for reasons.  I think that if I was not Dx with MS, I would not be who I am today, but there are days - like the days I can not find the post office, can not go out to ride bikes with the boys, etc, but then, I am compassionate, and have more of a desire to be more vocal.  A voice to stand up for our rights, etc.

 

So Ms. MS and Crohn's, hang in there and do not give up.  It is indeed, one day at a time, but you have been blessed with a beautiful daughter, as I have been blessed with two beautiful boys.  Life has something grand in store for us.  We must keep our eyes open for it, so please, take care of yourself, and yes, this does suck, and self pity is allowed once in a while, but do not let it rule your life.  Please check out Mr. Gingold's books, as I think you will find them as helpful as I have.  You will more than likely have to special order them, as I had to, but totally worth the read, wait, and money.  Best money I have spent in a LONG TIME.  Also, last piece of advice, look into a Gastro-neurologist.  I know your neurologist is probably wonderful, etc, but a Gastro neurologist is a specialist in the Crohn's aspect.

 

Take care of yourself, as better days are ahead,

 

Shamrockgal

 P.S. did not use spellcheck, as I am learning how to use my laptop, etc.

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