25 y/old, ileostomy pending very afraid...any advice?

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praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 12/28/2007 5:27 PM (GMT -7)   
Hello all, I was looking up information on ileostomy's and I found this site. The post I saw by someone named amy was very encouraging so i decided to join.

History: I am a 25 year old female who was diagnosed with Crohns disease when i was 14-first year of high school. I've been hospitalized virtually every year since. This year has been the worst. Due to reoccuring abcesses and fistulas I've been hospitalized several times this year. I've been on prednisone, asacol,6mp, azasan, remicade ( no longer works), and am soon to start humira.

However, due to a recto-vaginal fistula that has developed I have no choice but to get an ileostomy or colostomy (not really sure which one, im a little confused). My humira came in the mail today. I am very very very very afraid of what to expect with this procedure. My doctor says it will only be temporary (about six months) but that is not helpful to me. Some of my questions are:

How long is the hospital stay?

Does it hurt?

Does it smell?

Is it really noticeable?

Can you chose where your stoma is placed?

I obviously have many more questions but they're all out of fear of the unexpected. I cry alot now due to the weird things that body is going through. And I dont know if i will mentally be able to handle this surgery. Any information about your experiences would be greatly appreciated.

Also, has anyone used humira? has it been effective? remicade was helpful for me when i used it during college, but I later developed a staph infection and it hasn't worked since.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/28/2007 5:56 PM (GMT -7)   
I first want to welcome you to Healingwell. There are alot of wonderful supportive people on this board. I don't have any answers for you as I have never had to have a ileostomy, but wanted to let you know that I will definetly keep you in my prayers. There are a few folks on this board who have ostomies and many say that while it took a bit to get used to they have never felt better Crohns wise. Healingwell also has a ostomy board too. I think there should be someone else along soon to share their experiences with you soon. Please keep us posted on how you are doing.

God Bless,
Gail *Nanners*
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.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 12/28/2007 6:05 PM (GMT -7)   
Welcome to this Forum! I am sorry to hear of all the things you have been through! My problem is limited but I am sure there are plenty of people here who can relate. There have been many posts about ostomys in the past, so you may want to look back in time. From what I have read, the ostomy gives the body the time it needs to heal. Please stay strong and know that you really can do this!! Keep focused on the positive end results!

Please let us know how it goes!

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." (Isaiah 41:10)

Blaze
Regular Member


Date Joined Aug 2005
Total Posts : 50
   Posted 12/28/2007 6:57 PM (GMT -7)   
Hi Prayin - So sorry you have to go through this. I was 13 at diagnosis and had a permanent ileostomy at 18. I'm 46 now.

The first thing I think I would do is get a second opinion. But if it must be so...
You should see an ostomy nurse and discuss in depth the equipment and placement. Placement is key...! both for clothing and comfort. And don't let them skip that step just because its going to be temporary.

It does not hurt at all
There is a learning curve while the stoma shrinks to it's permanent size. It will be about twice it's norm out of surgery and you will learn to cut to fit the appliances etc. The ostomy nurse should also be on board to help you through this so that you can get a secure fit and use products that will work for your skin.

It does not smell at all - the bags do not let any odor escape at all
If placed right you can't even tell you have one. In fact a GI I just saw recently for a second opinion when examining me exclaimed oh my gosh I couldn't even tell you had one.

All my surgical stays in the hospital lasted around 10 days, but that doesn't mean it will for you, everyone is different.

I hope this helped a little bit...

Wishing you all the best.

 

Crohn's disease diagnosed in 1974 at 13 years of age.  First surgery at 18 removed entire colon, rectum and 3 ½ ft of small intestine resulting in an ileostomy.  Multiple surgeries since, with only 4-5 ft of small intestine remaining at this time.  What remains is in bad shape with two severe fibrotic strictures. Very painful.  Any further surgery would likely put me on TPN, which I've been fighting to avoid with anti-motility meds and pain management.  Silver lining - My hubby of 21 years is the kindest man in the world and my hero, and our 18 year old son is a constant source of pride and joy for both of us.


MDdave
Regular Member


Date Joined Nov 2007
Total Posts : 74
   Posted 12/28/2007 8:20 PM (GMT -7)   

elcome prayin4healing :

 

I am 41years old male with crohns since age 13 and had my ileostomy  surgery in 1997 do to perianal fistula’s I just went back to my Doc to see about a reversal as my case back 10 years ago they would not consider one…things are better now a days and have come along way with new meds like you were on that may allow me to choose a reversal.

 

You most likely will have an ileostomy that will disconnect your colon so it will help dry up the fistulas and make them dormant my Doc said they will never go away but just not active (this is my greatest concern in getting reversed).

 

I at age 31 was not willing in my mind to go to a iliostomy and I had all the same thoughts that you have.

Let me address what my thoughts are for your questions.

 

How long is the hospital stay?

 My stay at John Hopkins was 10 days, but may very for individuals.

Does it hurt?

(I take it you meant the surgery) 

 It only hurt when I left the Hostpital (I was on morphine 9 days) discharged July 4th 1997,

The next day my wife and mom went to fill a prescription for Oxicodone and I started on one but it was no match for the morphine I was on so I took two and it help mange pain but was no match again but stayed at two pills.

I had Home Care Nursing (prior to surgery) with my fistula packing and they stayed with me after discharge it was the best thing and if your insurance will allow I recommend it.  

Does it smell?

 (for the most part no it does not smell, but you play a big part in making that so) Only when the stoma wafer is ready to be removed and a new one put on does it put off a odor that you will smell first before others (they last 3 days for most brands) this is a sticky back wafer that will fit over your stoma.

Mine is a two piece application were the wafer and bag snap together like Tupperware, this makes it easy to release air as you can burp it…I joke with close friends and say I will save all my gas and let it out once.  devil  sorry its a guy thing.

 

The other is one piece and you will most likely have that after you wake up from surgery and when you come home, but a ostomey nurse will cover all the different types to you so you can buy what you want after you leave the hospital. They will send you home with a small supply that should last you a week.


Is it really noticeable?

(I take it you meant “is the bag noticeable in public.(NO) Its never been noticeable problem for me and have co workers for ten years that still don’t know (except swimming in public more hang up for me than anything but I have gone and will go).

You may have a mucus stoma and this is you large intestine/Colon,you will put 4x4 gauze and tape over this as it produces a clear natural fluid from your large intestine it will be located above you wafer stoma that is at/around your belt line. Most people will see this if swimming in a bikini but not a one piece (I don’t have that option it would look funny :-)   

My home nurses before surgery all said you don’t see it and they were right they

also said that it does not stop you from doing anything you want to do as far as activity.

 True to that I camp,swim, hike,wresltle with oldest son work on jeeps and go four wheeling,coached baseball and football with out issue.

No one will know unless you tell them.

Can you chose where your stoma is placed?

(NO) your Ostomey Nurse will decide and then the Surgeon will check the location and concur with the ostomy nurse (the ostomy nurse is a specialized nurse that will work with you on what to expect/how you feel about it and how to take care of it use her to ask about you fears and anxieties.

 

Hope this helps feel free to ask anything we all have had dinner discussions at the table.

Post Edited (MDdave) : 12/28/2007 8:51:40 PM (GMT-7)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 12/29/2007 9:53 AM (GMT -7)   
Thank you guys so much for your replies. I keep reading and keep reading, trying to be positive but it is hard. I'm reading a lot about all of these supplies and what not which is becoming another worry of mine.

Due to my perianal fistulas and hospitalizations I have used all of my FMLA time and am currently awaiting termination from my job. In which case I will lose my insurance. These supplies look expensive. And I've heard horror stories about docs and hospitals refusing to take the bags off b/c people have lost theyr insurance, also I wonder if I lose mine will I b forced to get less than quality care.

I am in new jersey and am receiving treatment from robert wood johnson hospital. I don't know if anyone has heard of it, but my doctor is supposed to be really well known when it comes to this and he uses new"techniques" (whatever that means) that cause minimal scarring and what not, so I worry that upon loss of my insurance I will lose quality care.

When I mention this to my surgeon he just says don't worry about it, my care is most important.but that's easier said than done, he's rich and doesn't have those concerns :o/

I didn't mean to write a book, but everyone seems so helpful and u'v been answering questions that I can't sind answers to online or n e where else. I am truly grateful to you all. Thank you again sooooo much, I believe I will b a member of this site for life

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 12/29/2007 10:07 AM (GMT -7)   
P.s. Fall colors that scripture was really helpful to me thanks a lot!

Mdave, u mentioned that ur doc says ur fistulas will never go away. Mine have mentioned the possibility of them closing on theyr own with remicade or humira * as I said b4 the remicade was unsuccesful which is y I'm going to try the humira* but also the mentioned a mesh plug that they insert surgically, that I'm not a candidate for b.c of the fact that my fistulas are still showing active infection or whatever. Have u tried n e of these?

MDdave
Regular Member


Date Joined Nov 2007
Total Posts : 74
   Posted 12/29/2007 11:23 AM (GMT -7)   

I have tried no meds at all since 1997 as I have had no fistulas or crohns activity.

You said your doc said they would close on there own with remicade and humira he is right but the key word is close not go away.

my doc explained that they will be closed and stay in active/dried up in 1/3 of people using remicade and humira but never go away.

My doc is the head of Meyerhof Gastro wing at JHU he is world renowned teaching doctor of IBD and Crohns.

After my surgery I had 9 doctors (all on leave from their practice for training) around my bed and my doc was the teacher for the other doc's (Theodore Bayles is my doc goggle him) NJ is not far from Baltimore JHU if you could get there I would recommend it.

I'm not sure of the mesh plug did he mention a seaton that is a rubber band that help keep  the fistula from closing and lets it drain. Supplies are expensive with out insurance each wafer cost 5-6$ and come in box of 5 and box of 10 and like I said you use one every 3 days. I use ConvaTec brand for 10 years…their factory is in Princeton NJ look them up online.

 

Side note, there are places that take donated medical supplies from people who

no longer have a need for them and these places will be able to help you out

if you have no insurance, look around online for a place that does this in your area and

hook up with them.

 

I read a article years back were a lady had no insurance and she was with out

any supplies so she had sat in her tub do to be with out…a charity ostomey supply

group came to her aid.

 

Dave

 

Post Edited (MDdave) : 12/29/2007 11:30:11 AM (GMT-7)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 12/29/2007 12:52 PM (GMT -7)   

Dear praying4healing

Hello, this is Kitt.  Remember each person's experience is different.  I am going to post the link to Convatec.  Thiis a company dedicated to wound and skin care.  It is a great web site as it answers many questions re ostomies and the care of your ostomy.  I am familiar with their product as this is what we used at our hospital for our ostomy patients.

I am not promoting the sale of their product as better than anyones just feel you may learn some answers to your questions.

This company also has a nursing division that actually provides  education to patients and help in choosing your products post op.  Your hospital will have a ostomy nurse see you so rest assured you will receive instructions.

http://www.convatec.com/convatec/jsp/CVTUSCHome.do

I know how afraid you are, I want you to be sure and write down all your questions to ask about the ostomy so when the time comes it will be easy for you to remember your biggest concerns.

My email is posted if you need it. :)

You wrote: Due to my perianal fistulas and hospitalizations I have used all of my FMLA time and am currently awaiting termination from my job. In which case I will lose my insurance.

Here is the site that may help you understand your rights re insurance:

http://www.dol.gov/ebsa/newsroom/fscobra.html

Gentle Hugs

Kitt


 
Co-Moderator Anxiety ~ Panic Disorders
Co-Moderator Crohn's Disease Forum
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression, GERD, Osteoarthritis
*Wife of a Crohnie*
******www.healingwell.com/donate***
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 

Post Edited (stkitt) : 12/29/2007 1:05:34 PM (GMT-7)


20yearvet
New Member


Date Joined Jan 2007
Total Posts : 9
   Posted 12/31/2007 12:53 PM (GMT -7)   
HI,

I am a 31 year old female and have had Chron's since I was 8. I am now on Remicade and pregnant with baby #2 (very excited). I became a colostomate (permanent) when I was 28.

I have had no issues with my ostomy, but I highly suggest you get flange (base that sticks to you) and bag samples from BOTH Coloplast and Convatec. I was sent home with Convatec and hated the way they went on, so I switched to Coloplast but each person is different. I found closed pouched better than drainable. I also prefer the opaque bags with fabric (they feel much nicer).

I can still wear a bikini (well, when I am skinny enough to tongue !) Make sure you do your best to pick WHERE you want your ostomy to go (do you wear low rise jeans, etc). I have found tummy control underwear hides the flange "ring" so well that I can even wear a fairly tight dress and no one would ever know.

Sex with hubby improved VASTLY as well. I used to get crampy and now I don't! I suggest picking up the tube top of a bathing suit and using that low on your body to hold the bag tight to your body when intimate OR get a skin tight "teddy" nightgown. I only miss swimming - you can go swimming, but you will need to change the base afterward because it won't keep flush once wet. My life has vastly improved since becoming an ostomate.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 12/31/2007 3:52 PM (GMT -7)   
Kitt, thanks so much! U r the only one that has even remotely adressed that issue as I couldnt find any information, I'd hate to have this hole put in me and then not b able to care for myself.

20yearvet ur post is sooo encouraging! I often worry about my future, iv essentially given up on having a family and things of that nature due to pain and embarrassment especially from this up and coming ileostomy. I just figured I'd lament over those things when I got to them, if u don't mind my askinf, where is ur stoma located? I wear low rise clothes and I like my clothes to fit closely but I don't see how this would b possible.
Honestly, I don't see how people females inparticular do jeans that aren't huge b/c I don't know how they'd place the bag.

N e way, thank you both soooo much this was extrememly helpful! I am so grateful for u guys
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?!


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1496
   Posted 12/31/2007 7:31 PM (GMT -7)   
praying4healing: I'm very sorry for the ordeal you're going through right now. I see that you are getting some excellent advise from the members of this board. The only thing I can offer is to pray for you. May God be with you. 
My 13 year old daughter was diagnosed Feb. 19/07 with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa, and iron supplement.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 12/31/2007 9:01 PM (GMT -7)   
Just a reminder that there is an ostomy forum on here too and I am sure they can help!! I am sorry you are going through this and I am sure others will help you more than I can. I just wanted to add that when I was in high school my 17 year old female friend had UC and had a temporary colostomy. She did not change her wardrobe one bit and we never knew it was there if she didn't tell us. Her only complaint was that hers would make noise sometimes. I never heard anything that didn't sound like a hungry stomach so I highly doubt someone was thinking "hmmm she must have an ostomy and is pooping lol." No one would have ever guessed.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/1/2008 11:09 AM (GMT -7)   
73 monte, thanks alot, trust me I know the power of prayer and that alone is extremely helpful.
FitzyK, thank you, i finally found the ostomy forum and i am getting some answers. Everyone says its barely noticeable. I guess at this point it doesnt matter anyway, what has to be done has to be done. This site, and people like you however, are making it just a little easier to deal with the choices that I have to make.

Thank u all
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?!


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/1/2008 4:20 PM (GMT -7)   

praying4healing

It is ok to be scared, your human.  Just keep remembering that many people are praying for you and we will be here after your surgery too, so take our hand and we will be right beside you in spirit. Let the tears out as I am sure you have some.  It helps to let out your feelings.

You belong to the HW family now............you are not alone in this.

Many Gentle Hugs,

Kitt


 
Co-Moderator Anxiety ~ Panic Disorders
Co-Moderator Crohn's Disease Forum
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression, GERD, Osteoarthritis
*Wife of a Crohnie*
******www.healingwell.com/donate***
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/5/2008 11:23 AM (GMT -7)   

Just read your post,and wondering how your'e doing?

Hugs :-)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/5/2008 6:36 PM (GMT -7)   
hi lynn,

im ok at the moment considering my doc was on vacation and won't b able to give me my date until monday lol. the only thing is, the reality of it is all becoming so ..... real (if that makes sense) he better hurry b4 i talk myself outta this thing. Thanks for asking.
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?!


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/5/2008 8:28 PM (GMT -7)   

Hang in there,I know it's easier said than done!! Here's my deal,since being on Imuran for over a year,I have felt good,but my scopes always look really inflamed,so I'm on Humira,and my next followup scope is this Wednesday,and I'm freaked out,because no matter how I feel,they find something bad about my colon,it's just sooo stressful,isn't it?? So,we have this patient ( I'm a RN,go figure...) who is a little older than you who has an ostomy,she just had her first baby about a year ago,and is doing great,she says it was the best thing she ever did,just thought you could use any success stories we have right now,hope it helps a little. This is a great place to vent,these people here are so supportive of each other,it's amazing :-)

Please keep us posted,we care :-)

 

ps...this is what I'm going to look like Wednesday when they tell me how bad my colon looks AGAIN devil devil devil devil devil devil


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/5/2008 10:10 PM (GMT -7)   
thanks lynn you're right! every success story makes it a little easier to face. I will definitely keep you posted on my surgery date and everything, as i have nobody else to really talk to about it ne way ;op. Also, speak positivity! i believe sometimes we can speak things into existance so i'm saying your scope will go suprisingly well wednesday!! ( am i a hypocrite or what? lol)
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?!


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/6/2008 7:06 AM (GMT -7)   
Thanks!!  I know what ya mean,I'm a hypocrite too,don't mean to be,but I'm not very good at being optimistic for myself tongue

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 1/6/2008 4:15 PM (GMT -7)   
I had 3 surgeries in 07. I have had CD since 87....well that was when I was diagnosed anyway. 20 years I was maintained on meds and when I became sick they had a lot less options for meds as they do now. I had an emergency resection on 2-12-07. Part of my colon didnt wake up after surgery and was turning necrotic so....on 2-19-07 I had a temporary ileostomy. At that point they removed 1/3 of my large bowel. I had the ostomy reversed after 4 months since I had many complications thanks to a moronic resident who got feces in my incision and since they were all emergency surgeries I was not propperly prepped for surgery and ended up with abscesses. They discovered an intestinal fistula with the 1st surgery it went from 1 part to another therefore it went unnoticed in tests. I had the reversal done 6-20-07. most people....obviously I am not 1 of them...have 3-5 years of symptom free CD or more. within 1 month I had symptoms return the joint pain and abd pain was the 1st to return. I think had I had a permanent ileostomy this would have not returned as fast since it was limited to 12cm of my ileum...I stillhave ileum left and that is perfect...the CD came back to me at the anastomosis and about 7 inches up from my anus right where the descending colon changes to the rectum. I had an enterocutaneous fistula appear in late september the pentasa and entocort were not helping the systems. I had a colonoscopy done to prep for my surgery which I will be having this upcoming friday 1-11-08 to repair the fistula surgically since the docs have exhausted all other methods. My GI said visually the hujmira has put me in remission with exception to the pseudopolyps that showed some active colitis but it was only deemed that way from the pathology it was not visable. The humira has helped me so much as far as joint pain and abdominal output from the fistula size of the fistula etc. I actually have to give myself 1 shot each week unfortunately the typical maintanence dose does not work enough for me. I got a cold the other week therefore was unable to give myself the shot and i noticed a big difference that week.

It took me a while to get use to the fact of having an ostomy and since it was a temp ostomy I still had occasions where I would pass mucous from my rectum. When I ate salad etc you can kind of tell what you ate and sometimes whole pills will pass into the bag as well. That is what got me on fentanyl patches instead of oxycontin....the oxy is 12 hour time release and was coming out into my ostomy bag withthe writing on it still legible. Since I had a wound vac from the incision infection from that moron resident the ostomy dressing overlapped ther wound vac dressing so if 1 leaked it made a huge mess and it occured mostly at night since you dont typically feel it leaking. I got a lot of help from the ostomy forums in healing well learning about different products. If you go to hollisters website u can send for samples and some others I guess you can call for samples. I have adhesive allergies so knowing i was not allergic to hollister I stuck with them. If you worry about odor I suggest M9 drops they do wonders. At the begining I would use gloves when changing and cleaning the ostomy bag ect...when it was close to my reversal surgery I noticed myself feeling more comfortable emptying the bag other places than home and I would always have a bag with supplies as a just in case....and I noticed after a while I wasnt using the gloves I had in my bag etc when changing it. I was buying baby wipes in bulk tho to clean the stoma and got myself a 4 gallon trash can for the bathroon with a swinging lid for my dirty bags, wafers etc and baby wipes since they r not flushable.

When in the shower I would use a bottle purchased from a beauty supply store that is used for coloring hair. it has the pointed tip and you can squirt it at different angles. This helped in the shower to clean the inside of the wafer to get every last bit out. I would also use it at times to squirt into the stoma to remove any feces that may be right near the end of it. You may see the stoma in peristalsis (moving the poo out) that is totally normal. Had I not had this surgery I would not be on this earth anymore. Make sure your health insurance covers ostomy supplies. My health insurance does not cover them however they work with a few supply houses that give a discount of about 40%. Toward the end I prefferred hollister's new image line. the bags have a fabric cover so you dont see what is in thre plus in the heat on a hot day wont make a steaming bag of poo stick to your leg. The wafers in this line are adhesive edged (with tape edges was the type I was getting) would be like a fabric bandaid as opposed to white paper tape.

GL
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/6/2008 5:24 PM (GMT -7)   
wow dragonfly,
 
thats alot to go thru in such a short time. I dont think i could have ever dealt with all of that, and the part the makes it worse is that some of it was due to human error, that freaks me out the most. I'm glad you are doing better or will be soon. Yeah i've heard some pretty weird solutions for odor, from peroxide to mouth wash!
 
but about this mucos, my doctor mentioned this, is this controllable? like if its going to come out through the back, do you feel it as if you were going to use the bathroom?
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?!


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 1/7/2008 12:04 AM (GMT -7)   
As far as Humira goes... I'm in a similar boat. Was on Remicade for a while, but it's effectiveness was fading. I was lucky enough to get into a study for Humira, and the loading dose (4 syringes, woo!) was great. gave me a few weeks of that holy-crap-i-think-im-healthy feeling. then i got randomized to placebo and spent a few more weeks having no fun at all.

Then they switched me to open-label. It's taking a while to build up in my system, so I'm not at top tier yet.. but its definitly staving off the worst of the symptoms. Trying to get them to bump the dosages up to 1 week rather than 2 weeks, so that should help. Since you're not in a trial, I would imagine you can tweak the dosing schedule/amount to the point where youre feeling good all the time.

A lot of people (myself included) have problems with self-injecting. I've found that closing my eyes to push the needle in works, and its definitely getting easier.



I can also relate to losing your job- I lost mine as a direct result of trying to get into this study. I couldnt afford treatment otherwise, so I really had no choice... but in order to get into the study, they have to see how sick you are without meds. So I had to endure 40 hour workweeks lifting and carrying and sawing (with a very annoying boom-mounted saw that fought you at every turn) all the while only taking 150mg of azathioprine (and i was still drinking mtn dew at the time). It finally got to the point where I couldn't work anymore, and had to call in for a week (during which i quit drinking dew, which helped enough that i tried to go back the next week). Well, at a factory, they can't have that... and so my employment agency yanked me and tried to find something I could handle... but they specialize in hard-labor stuff, and werent able to find anything.

Honestly, as much pain/trouble as the study has put me through, I don't regret it. If you do end up losing your coverage, ask your doctors if there are any studies you can get into. I hope it doesnt come to that, though.
19, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/7/2008 8:57 AM (GMT -7)   
wow bane,

i never thought of the study idea. thanks for that info. It also helps that ur a male and u have problems with the self injecting. I went last week for the first time with the pens, and I was expecting it to be like the procrit ( iron injections i was taking that didnt hurt at all) so i wasnt worried. When the nurse cllcked the first pen, i nearly flew off the table! i cried like a baby! i was so totally embarassed. It actually hurt less when i did myself but it still hurt none the less. and yes i did have to close my eyes and push....but if it'll make me feel better, i guess its worth it :o/
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?!


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 1/7/2008 3:42 PM (GMT -7)   
hey ive jst got my temp illostomy,its ok i only reallt haf trouble changing my bags it kinda grosses me out lol,wen u 1st getit ull think that ull neva get use to it but u will! at first i cldnt even look at the bag and now i dnt mind nething bout it at all.and u can hardly even see the bag i wear tight clothes wit it,neway whos gna knw wat it is unless they knw wat they r lookin 4.neway goodluck wit ur surgery!
dx 17th August 2007,after 2 years of syptoms 20 yrs old 100mg azamun,40mg,losec,3000mg pantasa,20mg prednisone,9mg entocort

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