Hello All....I am glad I found this site

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Burchoid
New Member


Date Joined Jan 2008
Total Posts : 18
   Posted 1/11/2008 9:15 PM (GMT -6)   
Hello,

My name is Felicia and I was a premature baby(5 months) and had to have my anus formed manually. I am now 28 and have done all of the things that I see posted on here.... suppositories,laxatives, meds, manometry and defecography etc. I even did the biofeedback for almost a year. I was diagnosed with CI, Slow Transit Constipation and Pelvic Floor Dysfunction. Today I just had my 3rd Barium Enema under Xray. I haven't gone to the bathroom since Dec 17th the date of my colonoscopy. They now are saying that I should have a subtotal colectomy and would really just like to not look pregnant, bloated, and feel sick. I also am told that the muscles in my esophagus do not contract like they should and that is why food loves to come back up, but there is NOTHING that can be done for that. I am only 28 and newly married....

I would really like some advice as to what we should ask the surgeon when we go on the 25th and is this the right thing to do?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/11/2008 11:29 PM (GMT -6)   
wow that is a horrible bunch of things that have happened to you! i hope you get some relief regardless of what you decide!
pesonally, i think, if your colon is hurting you, take it out! it's not doing you any good like that, lol. My friends Mom has a problem with her esophagus muscles behaving incorrectly, and they gave her some meds and it helped alot, i'm not sure if hte condition is the same, but whenever i talk to her again i will ask about it.
Its best to ask the surgeon about recovery time, things like that. the person you really need to ask the questions to is the ET nurse, she or he will help you alot more with things like this. Ask her/him about placement, diff types of appliances, where to find local support groups, things like that.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/12/2008 7:39 AM (GMT -6)   
Felicia,
Welcome to Healing Well. I'm sorry you're having such troubles. sad I had my colon removed for a different reason - chronic diarrhea from Crohn's Disease. I have an ileostomy and feel great now that my diseased colon is gone.

Have you read any of the posts under the topic Total Colectomy? Many of the people who post there have had a colectomy due to constipation, so they would be able to give you the most information about how they're doing after their colectomy. Best of luck with your decision!
Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/12/2008 11:41 AM (GMT -6)   
Iv never had the constipation problem as my crohns gives me diarrhea (sp). But as far as ur throat, that seems odd that there's NOTHING they can do about it. Have u been to an ENT doc?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Burchoid
New Member


Date Joined Jan 2008
Total Posts : 18
   Posted 1/12/2008 11:53 AM (GMT -6)   
Thank you for all of your help! I have not seen an ENT doc just the GI ones. I have looked under the Total Colectomy section but I can't get to the 1st thread about it. There is so much to read!!!
 
How are you all doing with your ostomys? My husband is nervous about me possibly having one.....any insight?
 
 

Felicia

Lupus and Fibromyalgia
CI, Slow Transit Constipation, Pelvic Floor Dysfunction
Cervical Cancer


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/12/2008 2:07 PM (GMT -6)   
there are so many helpful people on here when it comes to the ostomy that you may end up like me (getting aggravated b/c the doc wont give me a date so i can go ahead and get it done!) when i came to the site i was deathly afraid of the idea, as i'd been fighting it for a year. But they made it so much easier to consider. As a matter of fact I just stopped crying due to their kindness, unselfishness, caring and insight. But enough of that! lol
n e way, u should check with the ENT (ear nose throat) doc and see if theres anything they can do, while the esophagus is part of the digestive tract, its also part of the throat. Most doctors tend to stick with what they know most, and in the GI's case, its the gut. Just a thought. I mean it couldnt hurt.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/12/2008 4:47 PM (GMT -6)   
Felicia,
I am so glad you found this forum. It has been such a great benefit for so many people who are considering surgery and for those who have already had surgery. Like you, I was dignosed with CI and Pelvic Floor Dysfunction. I attempted many, many means to have a BM but eveything seemed to back up into my stomach and make me look and feel pregnant. I had a subtotal colectomy but it was not as beneficial as hoped. However, it was helpful and I do not regret having the surgery. It was not until sometime later that the Drs learned that I also have a problem with the muscles in my rectum. I attempted biofeedback but it was not helpful. Now I have an ileostomy. This surgery has been very helpful. I still suffer with CI of the stomach and small intestines but I am eatting better and feeling better than I have in a decade. I realize having surgery is scary but I encourage you to have the surgery if that is what your Dr suggests. I had my first colectomy when I was 24 so I certainly understand being young feeling unsure about having surgery.

If I were you, I would ask your Dr about the CI in your small bowel and rectum. Have you had any tests on your small bowel transit? Also, what is your Drs expectation in relation to your rectum? Although you will no longer have a large intestines, you will still have to use your rectum. In addition, a lot of Drs do not like to remove the entire colon. They normally leave the end part of the colon (large intestines) called the sigmoid. Are you going to have your sigmoid removed (a TOTAL colectomy) or are they planning to leave the sigmiod (a SUB-TOTAL colectomy). These are the issues I would as your Dr. I hope this has helped you.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Burchoid
New Member


Date Joined Jan 2008
Total Posts : 18
   Posted 1/12/2008 5:08 PM (GMT -6)   
Amey,
 
I did have a transit marker test twice and it showed that the markers just stayed in my small intestin for four days and then sat in my large intestine for three days and then sat at the bottom of my rectum. I am not sure what to expect....I really just want to be "normal"! Even if that means just going every three days instead of every five weeks or so. I was told yesterday that my stomach had almost 6 pounds of stool in it and that it was almost up to my ribs. What is it like to have an ostemy? Are you married? How does this affect your marriage if you are?
 
Felicia

Lupus and Fibromyalgia
CI, Slow Transit Constipation, Pelvic Floor Dysfunction
Cervical Cancer


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/12/2008 5:49 PM (GMT -6)   
Felicia,

I am glad you are seeking advice and doing research. However, I doubt you or I will ever be "normal." For some here, have 10 bowel movements a day is "normal" as for me, I am still a work in progress. As far as having an ostomy, it is not too bad. Certainly, I would not have one if I did not need it, but I begged my Dr for a bag. I was willing to do what ever needed to be done so I could have a BM without laxatives. Yes, I am married. The experience of having an ostomy while married really depends on the marriage. My husband is wonderful. He only wants what is best for me. Does he like that I have a bag, probably not. Lets face it, there is NOTHING sexy about having a bag. Then again, there is nothing sexy about having a wife who looks pregnant all the time and vomits because she has so much stool empacted in her intestines. If you have a supportive husband then having a bag should not be a huge strain on the marriage.

I am sorry that you have so much stool backed-up in your system. Are they helping you remove the stools? Can you take anything to help you go? Even now with the ileostomy, I live on prune juice. Can you drink that and take a few laxatives?

I truly hope you find some relief very soon.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/12/2008 6:34 PM (GMT -6)   
Felicia,
I'm married with an ostomy, and I don't think my husband even notices it. When I'm naked or in my bra and panties, he'll look at me and tell me how beautiful he thinks I am. All the while, I'm thinking, "Doesn't he see this bag hanging off my stomach?" I guess he's so happy that I'm healthy that he just doesn't care about it. Most guys are much more laid back about physical appearances than we are. That's why it takes us over an hour to get ready to leave the house, and it takes them less than 10 minutes, and that's including a shower! :-)
Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Burchoid
New Member


Date Joined Jan 2008
Total Posts : 18
   Posted 1/12/2008 9:07 PM (GMT -6)   
I am glad that you two have such supportive husbands! I do as well, but still in the back of my mind think about it. Are the bags very big and do you experiance any leaking or smells? Sorry if this is personal, I just have to know from people that already have one.
 
 
Felicia

Lupus and Fibromyalgia
CI, Slow Transit Constipation, Pelvic Floor Dysfunction
Cervical Cancer 2005 and 2007
SI Fusion with Bone Graft 2006
Decompression Surgery 2006
 


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 1/13/2008 12:26 AM (GMT -6)   
Hi Felicia:

Welcome to the forum! I see you have already gotten some great advice from our other ostomates. To be honest it is still in the back of my mind about the impact of the bag on my wife's & mine "romantic life". But, in certain "crunch time" situations like these, I think it can even heighten the intimacy and strengthen the relationship. I know that I cherish my wife even more now than I did before and I didn't think that was possible. I don't know if this makes much sense but I thought I would just put it out there.

As far as the swallowing issues I would absolutely recommend seeing an ENT doctor. I have a stoma in my trache and just recently saw an ENT guy about surgery and it was an awesome experience. I had spoken to all my other docs (internist, surgeon, nephrologist, etc) and they really didn't have a good understanding about the trache but the ENT guy was knowledgable, engaged and informative.

I see you have been reading past posts and that's a great way to self-educate yourself. Welcome aboard!

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/13/2008 9:30 AM (GMT -6)   
Hello Felicia,

I have been reading your posts and just wanted to say Welcome to the forum! The folks here are soooo helpful and understanding. No question is taboo or out of line. And you have asked some really good questions.

As you can see by my signature, I have had my ileo for a long time due to Crohn's Disease. I don't think there is anything that I couldn't do if I wanted to. I have been married 17 years, married post ileostomy. I don't think my husband even remembers that I have it most of the time. The only think I do have to remember is to stay well hydrated --- ie drink, drink, drink. Since the digestive tract is shortened, and esp if the colon is removed, dehydration is the biggest issue. At first the new ileo can be really active (for some folks) and chances of dehydration are increased. I have also had several feet of small intestine removed as well as the colon, rectum; so I really have to drink lots of fluids. It has just become a habit for me to have a bottle of water or juice with me all the time. Even if I just run to the store, I just grab a bottle on my way out the door.

Best of luck to you,
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/13/2008 2:53 PM (GMT -6)   
Felicia,

To answer your questions about bag sizes, the size of the bag depends on the person and the person's output. Personally, I cannot stand wearing a regular size bag which is about 11" long. I always wear mini-bags during the day and the long bags at night before bed. When my hubby and I are spending some quality time together, I will either cap my stoma with a small cap or keep my mini bag on. If I cap my stoma, then I usually stay naked for our intimate time. If my stoma wants to be active and I cannot wear the cap, I will keep my mini bag on and put on a pair of Victoria Secrets crotchless panties. These pants come right below my naval and they hide the bag.

Please do not feel bad about asking personal questions. I have had my ostomy for 6 months and you are asking some of the same questions I asked. This forum was designed so that we could all learn from each other. So, keep asking questions and we'll do our best to help.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot

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