Please Help….Very Discouraged

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LaNativeLioness1
New Member


Date Joined Apr 2006
Total Posts : 14
   Posted 8/28/2006 1:16 PM (GMT -6)   

Hi Everyone,

 

It’s been a while since I’ve been on this forum. On April 28th 2006 I had a colectomy (SI connected to the rectum) and felt amazing about 3 weeks post opt. I continued to feel great for a couple of months then started feeling kind of ill. It ended up that I kept on obstructing and after the 5th time in the hospital I had surgery again to fix it. I was all twisted up and herniated. (This was 3 weeks ago BTW) ever since I have not felt well at all, not one day. I have severe distention & fullness, nausea and vomiting and very weak. I was given antibiotics twice for bacterial overgrowth but it doesn’t seem to be doing the trick. I feel awful. sad

 

I ended up in the ER two nights ago. They saw some dilation at the connection point of the SI and rectum but were unable to determine the problem (they actually said “we don’t know what to do with you.”) and sent me home. My GI is out of town and will be until the 6th. I’m so frustrated and feel like things aren’t going to get better. The bloating is so bad, I feel like I’m back at square one b4 my colon was removed. I’m back to wearing my big clothes and have become reclusive again. This is not me, but I feel stuck. Any ideas on what this could be?


wmnak
Veteran Member


Date Joined Jul 2006
Total Posts : 1123
   Posted 8/30/2006 8:52 AM (GMT -6)   

I don't know where you are located, but would strongly suggest a consultation, 2nd opinion, from a certified colo-rectal surgeon.  Check the internet for their professional organization, which will list those near you. 

Anytime you are told they (the professionals!) "don't know what to do" it's time to move on!  You should not be having to suffer like this.  Something bad wrong here.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 8/30/2006 8:56 AM (GMT -6)   
I agree, and I don't think a GI can solve this problem.

You need to see a colorectal surgeon.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/30/2006 2:53 PM (GMT -6)   
I am so sorry you are having such a hard time.  I want to ditto my fello reponders that you should get another opinion.  Afte my colectomy, I was sick for over 5 years.  No one would listen to me exept my hubby and my sisters.  I always felt ill.  I went to 8 different Dr's in one city and 7 Dr's in another.  They ALL said something different and nothing they did helped me.  Until Sept. 05 when I ended up in the ER with over 30 obstructions in my SI.  The emergency surgeon noticed that the whole were my SI and rectum was connected was so SMALL (>4mm) that nothing could pass which made me sick.  Every time food would get through my SI to my rectum, it would get stuck.  I would bloat and get sick.  This was the problem that NO ONE discovered!  My point is....find another Doctor and another and another....until you find someone who can help.  I know it is frustrating and time consuming but you have to get better!  I am a homeschooling mother and sweet children were taken everywhere with me!  It was such a pain but I wanted to get better. 
 
Second, are you are religious person? I truly believe that we are given trials for a reason.  The only thing that kept me going was prayer and my family.  I found great comfort in knowing I have a Father in Heaven who wanted me to get better and was going to help me. 
 
I truly hope things get better. I am 8 weeks post my revised colectomy and I still feel ill.  I can only eat 2 small meals a day.  I run 4-5 miles a day and I am still bloated!  I feel like I am PMS all the time with the bloating, water retention, and swelling.  But, I have faith things will get better. 

Please keep me posted on your situation. 

Best Wishes,
Amey

LaNativeLioness1
New Member


Date Joined Apr 2006
Total Posts : 14
   Posted 8/30/2006 4:28 PM (GMT -6)   
Thank you all for your responses and yes, if a doctor tells me that they don’t know what to do with me, RUN. I have in the past; I’ve been doing this for YEARS!
What frustrates me the most is that after my colectomy I felt AMAZING. I had my life, actually I had a life.

I then obstructed 6 times before having the second surgery. The whole month of July, with the exception of a few days here and there was spent in the hospital.

I have an amazing GI, but he’s gone a lot speaking & lecturing, but I found someone who actually studied under him and I’m seeing him on the 6th (which seems like a decade now) As for the surgeon, he is a CR surgeon, and preformed both surgeries, but he doesn’t think out of the box. When I was in the ER, the ER doctor spoke to him on the phone and actually sent him over the CT scan to review together and he was stumped. I will look for a second opinion.

I live in Los Angles & both surgeries and all hospital stays and visits were at Cedars Sinai. I will ask my GI the name of the surgeon he wanted me to go with initially. I did not end up with him because I would have gone under financially, I believe the surgery (colectomy) cost over 100,00 dollars, but a consult will be a good thing. If you can give me the website you mentioned, that would be great.

Amey, I’m so sorry to hear that you have been suffering too. What is a revised Colectomy? Yes, I feel that we all go through hurdles and trials for a reason, but I’m so tired of constantly fighting for answers and trying to figure out how to improve this situation. I have no idea how you are even actually able to run with all that you are going through, I’m amazed! I understand doctors giving different views on these types of things. For years I was told that it was in my head, or that I had IBS but I knew they were wrong and told them so………….not the best thing to do because some docs don’t like to be challenged, but I can’t think about their egos, I need to think of my health. Did you develop bacterial overgrowth after your obstructions? I know it’s quite common. If that’s what I have (one of the things) then it’s really aggressive.

I’m so frustrated and even getting up in the morning or taking a shower is a chore.

Any other posts will be greatly appreciated. Just knowing I’m not alone is helpful.

Thanks all,

Danielle

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 8/30/2006 6:25 PM (GMT -6)   

Danielle,

I had my surgery by Dr. Robert Beart at USC's Norris Hospital in Los Angeles.  He is the top CR surgeon on the west coast.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


RITAS
Regular Member


Date Joined Feb 2006
Total Posts : 140
   Posted 8/30/2006 7:48 PM (GMT -6)   
Hi Danielle,
 
I had a total proctocolectomy on April 26, 2006 and had my ileostomy reversed on July 14.  I'm a month and a half post surgery and I feel great.  I got my life back and I'm back to my normal daily activities and routine.  I only have to watch for hernias near the incision so I can't do too much bending or heavy lifting.  I too had my surgery done at Cedars and I have no complaints at all. I'm very happy with the doctors and surgeons.  I'll give you the names of the guys that took care of me and maybe you can get a hold of them for another opinion.  They are truely phenomenal and they don't treat you like you're just another number.  They take the time to talk and anwer all your questions.  They are very patient and understanding.  Nobody around me believes that I have been through two major surgeries.  They say the doctors have to be wonderful to get you better so quickly. So please, call them if you get a chance.  You've been through so much so you have nothing to lose. Also, I don't know if you're relious just like someone else mentioned but if I didn't have my faith I truely don't think I would've gotten through this.
 
Dr. Andrew Ippoliti and Dr. Papadokous (GI's) 310-423-4100
Dr. Eiman Firoozmand (The best colorectal surgeon you will ever come across...EXCELLENT!!!!) 310-273-2310
 
They are at the top of their field.  I hope this helps you and you feel better sooner than later. Please, please, please, if I can do anything to help, let me know....I know what it's like to be discouraged.
Good Luck!!!!!

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/30/2006 8:19 PM (GMT -6)   
Danielle,
 
In my case, a revised colectomy, was a surgeon going inside and widening the area that connects my SI to my rectum and removing previously formed scar tissue.  I had my first colectomy in June 2001 and I had surgery in 2005 for small bowel obstructions.  In June 2006, I had the revised colectomy which repaired the errors made in 2001.  After the first 2 surgeries, I recovered quickly, I felt like myself, and lost the water weight with in a couple of days.  However, this recovery has been slower and much more difficult.  My dr has not said anything about bacteria but he has not really been able to help me with the bloating and edema.  I even had to quit my job as a fitness instructor because I cannot fit into my workout clothes with the bloating.  I assumed my insides were swollen and slow to heal, but I will ask about the bacteria. Can I take anything herbal to help?
 
I wish I had more to offer you.  It sounds like you are doing everything that is with in your power.  Sometimes there is nothing we can do but be patient and pray. 
 
I truly hope things get better.  In the meantime, use this forum for support.
Best Wishes,
Amey

LaNativeLioness1
New Member


Date Joined Apr 2006
Total Posts : 14
   Posted 9/2/2006 12:28 PM (GMT -6)   
Wow,

Thanks for the names.

My GI, who is amazing is Dr. Mark Pimentel. You can google him and he's everywhere. He's the director of the Gastrointestinal Motility Program at Cedars-Sinai Medical Center, His contact is 310-423-6143 if anyone is interested in seeing him for a consult.

Amey-I know what it's like to have so much scar tissue. When they went in the last time they told me that the scar tissue was so bad and apparent. The surgery took 4 hours to remove it all and to undo the twisting. As for overgrowth, I used to have it all the time b4 my colectomy. You develop it because things just aren't moving and bacteria accumaltes in the intestines causing severe bloating. But even though we are colon free, we are still prone because the SI is like wildfire with bacteria. You should really discuss getting a hydrogen breath test to determine whether or not you do in fact have intestinal overgrowth. It's very common after obstructions because things comne to a halt movement wise and bacteria builds up. Considering you have obstructed so many times and have had trouble passing Bowel Movements, I think it would be wise to check it out. It's usually treated with antibiotics like, Flagyl and Cipro combo, Levaquin, neomycin or Xifaxin.

I hope this info helped and thanks for all of your support. I'm still really frustrated and to be quite honest mad. I'm mad because I want a normal life already and can't imagine living the rest of my life like this. I'm npw 31 and I spent my birthday in the hospital, as did I spend the last two previous birthdays. The crazy thing is after my colectomy I was feeling so great. Just 3 weeks after I was out and about, possibly doing things that were not the brightest post op (dancing, etc..) but I felt SO GOOd and now I feel so bad, that's the most discouraging of all.

A question.............has anyone noticed when the bloating gets realy bad you put on weight? I'm naturally really thin, 115-120 normally (I'm also 5'10) but when the bloat gets bad I gain around 5-7 pounds and not sure why. If it's gas build up, that wouldn';t cause weight gain right? I mean gas doesn't weigh anything. Maybe it's fluid, I don't know. Just wondering if anyone has the same experience.

Much Love,

Danielle

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/2/2006 7:26 PM (GMT -6)   

Danielle,

You and I have very similar symptoms.  I too spent my birthday at the hospital; I turned 32 this past June.  I was also in the hospital for my first surgery in 2001. As for the bloating, I have had to temporarily quit my job because I have gained 5 pounds that I cannot explain.  I am a fitness instructor and I cannot fit into the clothes I wear to teach because my tummy is so distended.  I have been running 4 miles a day 4x per week and cycling 15 miles 3x per week.  Nothing seems to help.   My husband just keeps telling me to be patient but I cannot stand feeling this way.  I can truly relate.  I have tried gas x, digestive enzymes, beano, more water, less water, adjusting my diet, and meds.. nothing seems to help.  I take that back, Reglan helped, but the side effects were awful.  I felt like I was on a narcotic and I could not stay away while I was on the meds.  My body was full of energy, but my head felt dizzy.  I later read that is has neurological effects that can lead to Parkinson's disease so I stopped taking it.  But, for those 2 days, my tummy felt better.  It did not help with the weight.

If you find anything that works, keep me posted.  In the meantime, I will look into getting something to bacteria.

Hang in there...try not to get depressed....and I will do the same.

Amey


LaNativeLioness1
New Member


Date Joined Apr 2006
Total Posts : 14
   Posted 9/2/2006 10:08 PM (GMT -6)   
Amey,

My GI actually told me that stuff like gas x and other anti gas/antacids actually makes bloating worse if you have bacterial overgrowth. Have you ever tried charcoal tablets? They are a natural anti gas agent. I haven't tried them in a while, but I'm going to again. As for natural remedies, I've heard that garlic is good, well garlic is good for many things and peppermint oil works too, but they take time to work. I try to eat yogurt, they have natural anti bacterial agents.

As for the jogging, how do u do it? Walking feels horrible to me, I feel like a beached whale and don't have the stength to do much. Do u work now aside from your previous fitness instructor job? I have my own home based company, a gift basket website which is perfect for me now. How long has your bloating been really bad? People are also tellinig me to be patient but it angers me when they do and yes I am depressed.

Oh and reglan, I've taken it b4, man horrible side effects for me too! I was put on it b4 the colectomy and I had the weirdest side effects. It actually made me narcoleptic! Needless to say, I wasn't on it very long, I felt doped up all the time from it.

It does seem like we have alot in common.

My birthday was recent, August 22nd. I'm single though and honestly quite happy about that. I can't even imagine going on a date being and feeling so bloated. After my first surgery I was dating and looking forward to a relationship because I felt so awesome, but now even if I was involcved with someone I don't believe it would be ideal. I feel sick most of time and wouldn't be able to do it.

How's your relationship with ur husband been and how long have you been married? Just the fact that he's encouraging you to be patient is great and seems like he's supportive, but for me, it's hard for me to even feel sexy let alone pretty right now. I'm hiding under big clothes all the time now, but it sucks. I have two sets of clothing and my bloated clothes are getting alot of use while my "normal" clothes seem to be collecting dust.

Danielle

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/3/2006 11:59 AM (GMT -6)   

Danielle,

 

I have not tried charcoal tablets.  I wonder if they are binding.  The last thing I need is to get backed-up, LOL.  I have tried peppermint oil and it had no effect.  These natural remedies probably work best on people who do not have complicated health issues.   I have been reading a lot about dehydration and it can cause abdominal bloating and water retention.  (The weight gain I have experienced has to be water weight because (1) I gained it during the surgery and (2) I do not eat enough to "gain weight") I am trying to drink more water and I need to get my electrolytes checked. Having surgery can alter your electrolytes which will cause weight gain.  When I was in the hospital my Potassium was very low and they were giving me 4 bags a day of the stuff in my IV. Now that I am home, I am not sure if it has become low again.  Also, dehydration can be caused by vigorous exercise. I have always been addicted to exercise so this is probably true for me.  I drink about 60 oz of water a day but I am going to try to drink more and see if I can flush out my system.  Also, I may try juicing all of my foods for a couple days to see if I can detoxify my body. 

 

I am endeavoring to get better.  I do have a supportive hubby.  Although our love life is on hold and that is hard on him.  We have been married for 11 years and I have been ill for 7 of them.  I have 2 children whom I homeschool full-time.  I used to work real estate in the evenings and on Saturdays but that is on hold for now.  I refuse to buy larger clothes - although I did try them on at Target yesterday! I am only 9 weeks out of surgery and I know things are going to get better.  I just hate feeling heavy and I feel like the whole world notices the change...but, I am sure they don't.  My face is so full and my thighs are tight in my jeans - I hate that tight feeling!  I am 5'6 and I was 118 when I went into the hospital and I came home at 122.  I lost 2 pounds the first week home and I have gained 4 pounds the following week...I am now 124.  I know this is not bad; I just do not like it.  Danielle, I am sure you can relate.

 

I will let you know if there is a change for the better....


Amey


Helensc
New Member


Date Joined Jan 2006
Total Posts : 15
   Posted 9/6/2006 6:53 AM (GMT -6)   
Can anyone give me an answer?I had total colectomy(open) in january,and done pretty good til lately. Im having problems controlling bowels. I dont feel no pressure and it happens before i can feel it. Any help would be very nice thank you. Very humiliating

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/6/2006 7:55 AM (GMT -6)   
Oh my, I am so sorry you having this problem.  Have you called your GI?  First, I would consider taking something to slow things down...you can get something from almost any pharmacy.  Next, you may want to add bulk fiber to your diet to bulk your stools.  Fiber drinks are great for this.  Last, I try to eat lots of carbs..pasta, rice, bread. 
 
Sometimes I wish I could make my bowels move faster.  I have to drink 4 glasses of prune juice a day (I DO NOT recommend that you try this).  I hope things get better.
 
Amey

Helensc
New Member


Date Joined Jan 2006
Total Posts : 15
   Posted 9/6/2006 9:07 AM (GMT -6)   
Thanks for the help.I an at wits end. I cant hardly go out in public because of accidents.Is this normal? I have no control sometimes. Do you think i should call GI?Wasnt a problem til recently.If I take fiber will it constipate me?

LaNativeLioness1
New Member


Date Joined Apr 2006
Total Posts : 14
   Posted 9/6/2006 4:28 PM (GMT -6)   
No, I don not believe this is normal at all. It may be a rectal issue. Call your GI and have him/her do some tests on the rectal function. Maybe your rectum muscles aren't working properly or have weakened therefore the feeling to evacuate isn't present. Fiber will not constipate you if you take it moderatley. Try taking some slowly and see if it helps. And as Amey said, starchy/carb foods make the stool bulkier and not as watery. Try some bananas or rice which are supposed to be constipating but in your case it may just bulk up the stool. But like I said, slowly, like try one banana a day for a couple of days and see if that helps.

Otherwise, I really think you should speak to your doctor about this about your rectal function. I'm curious, before your colectomy, did your doctor preform those tests?
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