Suggestions and Advice Please!!

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CP64
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 7/24/2010 7:02 AM (GMT -7)   
HOW DO YOU HAVE A CLEAN COLON 4 MONTHS AGO AND NOW HAVE FULL BLOWN CROHN'S IN WHAT'S LEFT OF MY COLON AND THE ONLY WAY TO PUT ME BACK IN REMISSION IS TO TO REMOVE MY WHOLE COLON AND LEAVE ME WITH AN ILLEOSTOMY.   I'VE DONE ALL THE TREATMENTS--6 MP, HUMIRA, CIMZIA AND REMICADE.  CAN'T GO BACK ON REMICADE--CIMZIA KICKED ME IN THE A** AND HUMIRA DID NOTHING.  SO GASTRO THINKS THE BEST OPTION IS TO HAVE THE ILLEOSTOMY.  HE SAID MY COLON IS SOOOOO INFECTED RIGHT NOW HE HAS NO IDEA HOW I AM NOT IN TOTAL BED REST.  ( I AM A MOTHER OF 3 - THATS HOW)  I ALLREADY HAVE A PERMENATE COLOSTOMY SO I WOULDN'T HAVE TO ADJUST TO THE BAG--MY QUESTIONS IS MY SMALL BOWEL HAS NEVER BEEN AFFECTED IN MY 25 YEAR BATTLE WITH CROHN'S AND IF I HAVE THE ILLI--HOW FAST AM I LOOKING AT IT GETTING INTO MY SMALL BOWEL.  HAS ANYONE OUT THERE HAD A SIMILAR SITUATION, IF SO, ANY ADVICE WOULD BE DEEPLY APPRECIATED!!  THANK YOU!! CLAIRE

Becoming undone
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Date Joined Jul 2007
Total Posts : 927
   Posted 7/24/2010 9:19 AM (GMT -7)   
I don't have any suggestions, but some ((((((((((((((((((((hugs)))))))))))))))))))))))))))))))...
one note...when you write in all caps, it looks as if you're yelling...and it's kinda hard to read....(see rule #15 here www.healingwell.com/community/default.aspx?f=46&m=106997)
Take care...
"The earth laughs in flowers"


CP64
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 7/24/2010 9:46 AM (GMT -7)   
Sorry, I am not yelling--just frustrated with this Disease.

CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 7/24/2010 10:03 AM (GMT -7)   
Given your situation we can understand any need to yell - or scream - and cuss and ....

but we appreciate that you were so kind as to tone it down. (((hugs))) to you too.

I can't answer your question. No one really can. But if your quality of life sucks now ..... you do have 20 feet of small intestine and can spare a good portion of it if necessary.

What would be ideal would be if they could SOMEHOW get what's left of your colon into remission or at least symptomatic remission and THEN do the surgery. My own experience was that they got my raging Crohn's into remission before I had my "emergency" resection - and I was blessed w/a 20 year remission of disease activity before it recurred.

MAYBE a month of NPO, TPN and sterioids would tamper the disease activity down and then the surgery would help prolong a remission for you? Its worth asking your doctors about.

Good luck and God bless!!!!
My computer says I need to upgrade my brain to be compatible with its new software.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/24/2010 11:42 AM (GMT -7)   
Omg.. I am so very sorry. Many hugs to you .. I wish I had advice...but we are here to listen to you..
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 7/24/2010 12:12 PM (GMT -7)   
I have been in a similar situation with my terminal ileum. It was so badly infected with CD and I had to have it removed when I had a 1 year old. It was extremely tough. Plus I got sick again right after.

After I got sick again (new CD in the TI), I needed yet another surgery because of more obstructions.
I didn't want to keep having surgeries one after the other and end up with SBS. Seen too many with that and it aint pretty.

I got sooo desperate I tried the Maker's Diet for a few months and it helped (along with meds and treatment) to stop some of the daily obstructions and slow down the severe 30x daily diarrhea.
To this day, I am convinced I am keeping out of surgery because of faithful medical treatment, a natural God-made diet (especially when flaring badly), and probiotics and digestive enzymes and other natural remedies, along with prayer.

I know of at least one person here who has been exactly in your situation. I hope he doesn't mind me mentioning, but I'm pretty sure CrazyHarry has been there and he tried the Maker's Diet and it is the only thing that saved his colon.

Others have tried the Specific Carbohydrate Diet and it helped them. It's similar to Maker's Diet, but more strict about grains and dairy.

I strongly suggest you try the Maker's Diet very rigidly for at least the 40 days as the book suggests. It is a diet that focuses on intestinal healing and anti-inflammation and detox.
It may not stop your CD altogether, but it might help save your colon by aiding in healing and anti-inflammation and detoxing.

Also, go get a good strong multi probiotic, if you haven't already and start drinking chamomile daily and even decaf. green tea. These teas are also anti-inflammatory and healing.

I also agree with crohnieToo, TPN would give the digestive system a complete rest.

If you're a praying woman, call up the prayer lines and get your name on a few prayer lists.

Hope you will feel better soon.

CP64
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 7/24/2010 12:27 PM (GMT -7)   
Thank you very much for your suggestions--I am not sure what TPN is? As for the Maker's Diet, I will look it up and get started. GI wants to try humaira one more try--he thinks that when I was on it last it was there for my crohn's as that GI thought but instead it was my irratable bowel that was acting up and humaira will not do anything for that. Since it is deffinately Crohn's right now it is worth a try which I will try!! Anything - I really don't want to loose my whole colon and start playing with my perfectly normal small intestine.

HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 7/24/2010 12:35 PM (GMT -7)   
I am so sorry Claire. I honestly don't know what to say except I will be praying for you and yours.

37/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002,IBS 2007,Arthritis 2007,UC, then Crohn’s 2007,Generalized Anxiety Disorder 2008

 

Current medications: Asacol 2 tablets 3X daily, Imuran 100 mg daily, Prilosec 20 mg 2X daily (if needed), .05 mg Zanax (if needed) Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron, Young Living Omega 3, Young Living Core Supplements


Tara28
Regular Member


Date Joined Apr 2005
Total Posts : 362
   Posted 7/24/2010 8:12 PM (GMT -7)   
hmm. But if you have an illiostomy you wouldn;t have to worry about your small intestine, would you? I thought they traditionally gave illi's to folks with small bowel crohn's ..so then in that case you might only hsve to worry about other manifestations like mouth ulcers etc.

What about pred? Or anti-MAP?

I feel for you, I also have it in my colon and have a colostomy. It never let my colon heal though they thought it would, now they are saying they want to make the colostomy permanent.. I don't want to. for one reason, my retracted stoma. UGH!
33 years old, dx with Crohn's in 1998. Currently on :
Clofazimine 100mg daily,
Rifampin 600mg daily, and Clarithromycin 2 tabs daily
and Cipralex 10mg/day for anxiety.
Hydroxyzine, percocet, Ativan as needed.
5g pharmaceutical grade Omega 3's, 1000IU's Vitamin D3 daily
2 Perianal fistulas, and 1 more suspected. Crohn's only at end of colon, cecum. Remi, Asacol, Salofalk, Imuran, Humira did nada. Built immunity to long-term Cipro use, which also induced panic attacks.


CP64
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 7/25/2010 6:16 AM (GMT -7)   
I am on 40 mg of pred and an antibiotic called metrodizo? right now to help calm things but alls it is doing is making me more fatiqued.
As for the illi--I thought once you remove the infected part of your bowels the disease looks for other parts of the gi to attack so the next for me would be the small bowel? I am writing a list of questions to ask the gi and surgeon for when I see them again on Friday.
tara28 for the reason I had a permanate colostomy 14 years ago was that my rectum was so badly damaged from the Disease that my bowels were coming out of my vagina--at that time Remicade was not an option. Have you tried remicade? Once I had my colostomy they put me on 6 mp and asocol. I was in remission for about 6 years until they stopped working. Then came the colostomy, then about a 4 year reprive from the disease, then the disease is back this time with irratable bowel to make it worse, then the trials on remicade, humaira and cimzia and now I am here!! I honestly think this time around the Irratable Bowel made my Crohn's that much worse. Good luck! and thanks for the thoughts--I will be thinking of everyone out there with this Stupid Disease and wishing everyone good thoughts!!

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 7/25/2010 7:25 AM (GMT -7)   
Some here mentioned some trials at the Mayo clinic? Others have used some kind of pinworm therapy. Can they do a temporary ileostomy and let your bowel calm? Second opinion from an unaffilated doctor would be good. Are you careful about what you eat?

My thoughts
 


CP64
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 7/25/2010 7:39 AM (GMT -7)   
Pinworm therapy--don't know about that--never heard of it. I will definately ask about the temporary ileostomy and yes I am careful about what I eat.
Thanks for you thoughts--the temporary ileostomy sounds great to me if it can be done.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 7/25/2010 9:48 AM (GMT -7)   
crohn's can affect anywhere from the mouth to the anus. Just because it's in one spot, doesn't mean it will stay there.

Yes, there is worm therapy. It works well for alot of people and puts them in remission. But Insurance will probably not cover it as it's not approved by FDA.

There is a trial in England for the hookworm therapy and a clinic in Mexico where you can buy the therapy. Do a google.
Also, there was and may still be a trial in Iowa for the TSO (pig whipworm) therapy.

For TSO, you drink a concoction of microscopic whipworm eggs every 2-3 weeks, they live in the intestines for a short time, and your body somehow regulates the immune system so the crohn's can go into remission.

For hookworm therapy in Mexico clinic, they put about 10 or so microscopic hookworms on your skin and they go into the body and make their way to the intestines where they live for up to 5 years and the immunes somehow regulates and the CD can go into remission.

Worm therapy also helps other ailments. Some people here have tried it. Do a search in the search menu. Also do a google.

The therapies are expensive, but if you are desperate, call up the mexico clinic and ask them about it.

I personally think you should do the maker's diet. It's cheaper.

CP64
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 7/25/2010 10:11 AM (GMT -7)   
Worm's in my body doesn't sound too good--Have you ever watched the show Monsters in Me. I think I will skip that treatment.
I am going to buy the book for the Maker's Diet and give that a try. For now, hubby just came home with my ensure so bottoms up to everyone and thanks for all the advice!!

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/25/2010 2:43 PM (GMT -7)   
I would definitely ask about TPN (Total Parental Nutrition). Basically you have a Picc line inserted and you get all of your nutritional needs through a drip while you sleep and you have complete bowel rest. I had this in the hospital for several weeks to see if my bowel inflammation would go down to avoid a resection. It can be done at home with a home care nurse. It is difficult because you have to avoid eating, but if you are motivated to avoid surgery.....

There is also Enteral Nutrition. This I am not as familiar with but you can do a search on Writer's posts and come up with some good links.

If you can get your disease under control, you might be able to avoid surgery, or at least minimize it.

(((((hugs)))))
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 7/25/2010 3:21 PM (GMT -7)   
Claire I'm so sorry for all that you're going through. Being a mom of 3 myself I know how you just have to keep pushing for your kids even though you WISH you could just lay down. Bed rest???? YEAH RIGHT! I'm glad someone suggested diet to you. I did the Specific Carbohydrate Diet with A LOT of success. In fact, I'm getting ready to go back on it now because I'm in a bad situation and the heavy duty meds (remicade, 6mp, humira) aren't helping at all. I've heard a lot of good things about the Maker's Diet too. I don't know how bad off you are, but if you have a month or two to give the diet a try - I would TOTALLY recommend that. You can always cut later, if you have to, but maybe the dietary changes will do what the meds can't. I'm keeping my fingers crossed for you. Hang in there!!!

mybuddy
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 7/25/2010 6:44 PM (GMT -7)   
i had my colon removed in 2003. I had a illostomy bag for 3 months. I then had a pull thru and hooked back up. All of my crohns was in my colon. I was good for 5 1/2 Years. My crohns moved into my small bowl. They have found out that I don't respond or am allergic to all the meds out there. I have a illostomy bag now for life. Its better then being sick. Now my crohns has moved to my back. Extrem pain and my legs are going numb. Hang in there :)

CP64
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 7/25/2010 7:13 PM (GMT -7)   
Oh My - I had no idea crohn's could go into your back--I thought it was strictly gi tract to mouth? You hang in there too. I think god chose only the people who could handle this disease to have it--he made us Strong!!

mybuddy
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 7/25/2010 7:56 PM (GMT -7)   
I have had 2 doctors ( My G.I and pain manager) tell me that it can affect any soft tissue in the body. I really don't have problems in my guts since I got my illostomy. While I was going thru my last flare up my knees and ankles would swell up and I couldn't walk. Now my legs are week and feel like jelly. The arthritis in my back is causing my thigh on my left leg is numb. Nobody will give me answers to how bad it will get

CP64
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 7/26/2010 5:46 AM (GMT -7)   
I am so sorry for the pain you are having--maybe you should post a topic and see if anyone here has also had pain like yours. I know its hard but be positive!!
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