New territory for me...opinions welcomed

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hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 10/7/2008 8:50 AM (GMT -7)   
Compared to many on here I am relatively new to the crohns disease...I was dx'd almost 10 years ago, first UC then CD.  I know I had issues several years before the dx.  at first I was said to have a mild to moderate case....and when I would read on here what others went through or were going through, well I knew that even the word mild was overkill.
 
Then things got a bit worse ...and over the years I have stayed pretty level but level means the disease is active daily that it has not rested for several years...it never really stops and I have maybe 2 good days a week.  Nothing major...just lots of BR trips (on average 15 per day)  Other than Tysabri no meds have worked and now I am hesitant to go back on the Tysabri.
 
So this brings me to recent events....In the past 6 weeks I have had 5 harsh and painful attacks that include violent vomitting, severe cramps (above the belly button) bleeding at least once a week and finally last week one of the attacks got so bad I called my doctor at 10 PM and asked what to do...he suggested the ER.  So off we went (my first crohns related ER trip)....I was in so much pain and the ER was so slow I told them that I would call 911 and wait for emergency transport on the curb outside...they didn't laugh, but they did fast track me....after a few hours, lots of morphine and other drugs including anti-b's...after x-rays and c-scans I was admitted to the hospital for surgery (my first hospital stay in over 35 years)  the dx was a blocked small bowel.(which is what several folks on here said back when I described my first 2 attacks)  by the next morning my obstruction cleared up and I felt fine...sooooo surgery was canceled and I was sent home that evening.
 
I have been told that we should wait until i have another attack that doesn't clear....my reg doc and the gastro in the hospital as well as the hospital surgeon all are afraid to make the first cut...they say it is never a good thing to cut a crohns patient...
 
I am now nervous everytime I eat because i don't know if I will block up again and I never ever want to experience that type of pain again.  I chew my food till it is mush...eat lots of soup and soft foods ...I stay away from beef unless it is ground...
 
the fact is the hospital stay and the thought of surgery have put the fear of God into me and I am not sure now how to act....on one hand I have always treated everyday as if I was healthy and crohns was someone elses problem....and now I am almost the opposite.....except i did fly to Boston two days after leaving the hospital because my job requires lots of travel....but now for the first time I am nervous to travel.
 
Any thoughts????
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
52 yrs old


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 10/7/2008 10:18 AM (GMT -7)   
I am so sorry to hear about the ER trip. My first was a year ago June - I lost 4 "units" worth of blood. Like you, I had never been afraid with my Crohn's before. I'd travel and even backpack (no matter how inconvenient). I ignored pain and bleeding because it was just "what my body did." Now if I am actively bleeding, like with your fear of eating... it follows me into many areas of life.

I only have inflammation in the large intestine and only know what I've read on here about blockages. So I am no good for any advice there. But, have you looked into that new phase 2 trial for the Abbott drug - ABT-874? It's got an open-label after the first control study portion. I've discontinued Tysabri and am considering this trial.

I know that's not much in the way of advice, but my thoughts are with you. It's so hard to be scared to eat!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/7/2008 10:40 AM (GMT -7)   
Hi I know that those old blockages are nasty at times and I spent a year or so after my first on meds and that didn't help but I refused to get the operation instead holding out for the med help which didn't work. Before my surgery I was a sick old puppy and my teen had to cope with that .Went on for about 5 or 6 weeks and finally they said it was time .By then my small intestine was larger then my small in circumference .So I would have like to had the surgery done but one good thing I didn't blow up which probably would of happened after awhile. The bowels are working now mostly solid my surgery was in Jan. it was a hard ordeal before surgery and I hope others don't have to wait that long there needs to be a clearer definition of when it needs done or we'd all put it off forever no-one wants surgery but the time comes sometimes when it has to be done. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/7/2008 10:40 AM (GMT -7)   
I have had many blockages and know the pain you were dealing with. I have also had 3 resections, so I know about the surgery. All I can offer is my opinion. I don't want to have to face a resection as an emergency situation. I am a planner by nature. But what do the doctors think caused your blockage? Active disease, scar tissue? If it is active disease then you might be able to try to hold off on surgery by trying the new meds coming down the pipeline or with diet and keeping to liquids. But if it is scar tissue, nothing is going to heal it, and eventually it will need to come out or you will continue to have blockages. The options are yours, but I would want to have more information from my doctors as to why they would rather do an emergency surgery than a scheduled one?
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


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


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/7/2008 11:41 AM (GMT -7)   
I am with Zanne here. I would prefer to have a planned surgery vs an emergency. I have had 2 resections, one emergency and one planned. I think its better when you can plan it, I found it less traumatic for me. As for diet I live on a low residue diet all the time. No red meat at all. Only chicken, turkey or fish. Veggies cooked to mush, and generally really soft and easy digestible foods. Hugs and good luck!!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 10/7/2008 12:23 PM (GMT -7)   

thanks all for your words of wisdom and comfort.

I will be sure to ask the doc about what may be causing the blocks.  I agree that a planned surgery is better but my doctor is one of these guys who just doesn't want to cut....and that is a good question...why do the dr's and surgeons not want to cut a crohns patient...i was told on my visit to the ER that if i did not have crohns they probably would have done the surgery that night....but because of the crohns they chose to wait and see if it would resolve itself.  I have heard that once you cut a crohnie you just keep cutting every few years until everything is gone....any truth to that?

I am supposed to see the doc this Friday and we are going to discuss the surgery....he has admitted that 5 attacks in 6 weeks is a big indicator that the surgery is needed and that waiting may only prolong my pain and put me at risk, especially since i travel so much...I live in the Tampa, FL area but so far for the rest of this year I have trips planned to DC, Texas, Iowa, Los Angeles, Costa Rica, NYC and harrisburg, PA.  So there is a very real chance that I could get sick in one of those areas and need surgery away from home.

My doc said it is a simple resection...any thoughts on how long I will be out of commission?  What is the normal recovery time for a surgery of this type that goes well?

 

thanks again

 


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
52 yrs old


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 10/7/2008 12:37 PM (GMT -7)   
i think one reason theyre usually hesitant is because by its very nature, surgery exacerbates Crohn's. you have an illness that is essentially a malfunction in the immune system... and then you go in and cause trauma to the area its active in, requiring the immune system to be even more active in that spot. leaves the patient more vulnerable to infections/illnesses, plus the surgery doesnt solve the underlying problem.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/7/2008 12:57 PM (GMT -7)   
I notice you are on zero maintenence meds. Is it because you couldn't tolerate them or because they didn't work? If its because they didn't work maybe they would work some now and be better than nothing. I would think even asacol and pentasa could lower the inflamation you are experiencing. I do think with all your travel and the number of episodes you have had a planned surgery would probably be best.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Blossom28
Regular Member


Date Joined Oct 2008
Total Posts : 47
   Posted 10/7/2008 1:12 PM (GMT -7)   
I have had CD for over 30 years and never had a surgery until last January. I had to have a "routine" bowel resection due to scar tissue that was discovered during a routine colonoscopy. I had the routine surgery and all seemed to be going well. I went home from the hospital after three days and was doing well for two days, then I got really ill and bloated up and I was rushed to the hospital for emergency surgery . . . I had fallen apart at the surgery site and had peritonitis.

To make a long story short, I was in ICU for a week, almost died, but recovered with open wound healing and an ileostomy. I was told that Crohns patients have colon tissue that is fragile, and resections often don't work . . . I have "friability"?? in my colon. Anyway, I am now on Humira and they are going to operate on me to fix the amazing abdominal hernia that I have (from the open wound healing) and they are going to hook me back up again . . . all this is scheduled for November 3rd . . . pray for me if you pray!!

d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 10/7/2008 1:21 PM (GMT -7)   
Bane is correct about exacerbating Crohn's. Another reason is once they do surgery scar tissue will build up and cause stricture(s). I have lived with my strictures for 23 yrs, but that is not the norm. The norm, by 60%, is that patients will need another resection within 10 yrs. It is best to wait, however, when you are clearly obstructing I think the waiting game should end. If you ever obstruct fully, or leak out it can be a life or death situation. IMHO, it is better to get one done electively, rather than in an emergency where it will take much, much longer to recuperate.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 10/7/2008 8:24 PM (GMT -7)   

I am on zero maintance drugs because as you suspect they do nothing for me...even the Humira I am on now did very little to help.  I used to take 12 Asacol pills a day   they did nothing....steroids nothing (except all the negative side effects)...pentasa...medical enema's..the works....no positive results.  remicade is the next step I think.

 

I am beginning to wonder if I have issues other than just the crohns the could be affecting my small bowel...the colonoscopy always comes back as only showing minor issues yet my symptoms are those found in more severe or moderately severe cases...so I just need more answers.


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
52 yrs old

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