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Crohn's stricture & hyst...(very long) Crohn's stricture & hyst...(very long)

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Unread 08-10-2002, 10:56 AM
Crohn's stricture & hyst...(very long)

Hi all- I'm hoping someone out there sees this and it clicks.

Story up to this point: dx w/Crohn's disease in '89. Near death for next 2 yrs. Finally, resection of bowels (got lucky...thought I was having a colostomy!) in '91; abdominally, of course. Have only recently started having problems w/Crohn's again (over last couple of yrs.). GI has done all the standard tests...operative findings as follow: Multiple colonic pseudopolyps (removed 3 out of ???), colonic polyp, internal hemorrhoids, antral gastritis and (worse one yet) a 4mm terminal ileum stricture. That last one has been causing terrific pain. This was all found approx. 2 mo. ago. Unfortunately, my mind was elsewhere.------>

Okay, bio pretty much says it all. Doc has decided to do a tvh. I have many many concerns here. My resection surgery was 11 yrs. ago!!! I'm sure there are many adhesions!! Plus the stricture! The cyst on my ovary, he doesn't want to even adress right now. My mind goes back and forth on what to do....let him do the tvh for now, leaving ovaries, with my mouth shut?? (And no, getting another doc is out...on county health ins., this is the only doc covered by their plan, and I'm lucky to have him....he was President Pinellas County Medical Society '91-'92....and is now: Diplomate, American Board of Obstetrics & Gyn....Fellow, American College of Obst. & Gyn.) And then go back to GI after surgery and have him open me back up for this stricture?? I think while gyn. is in there, he could just fix everything right up! Maybe the county doesn't want to pay or something. But it's not like I WANT this to happen to me. Other than these 2 things, I'm very very healthy. Have never been on ANY assistance before this last year, and embarassed just to have had to ask for that!! I guess I don't know what I'm asking, it's just that there are no support boards out there for people w/Crohn's, or I would go and ask about a hyst. on there site, too. I've seen lots here w/varying forms of IBD, and I know a lot of people think it's the same, but in my case it's really not. Please, someone just talk to me...I think that's really all I need. Thank you, thank you, thank you.....many hugs

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Unread 08-10-2002, 11:15 AM
P.S. to stricture...

BTW, my GI is also my gyn./surgeon's GI, so they do know each other well I am planning on calling GI on Monday to see what he recommends as far as hyst goes.

Unread 08-10-2002, 11:48 AM
Crohn's stricture & hyst...(very long)

'S Dawn,

I'm sorry to hear of everything you are going through. I don't have any personal experience to offer...but I do have big shoulders and many 'S!

I e-mailed you a link that I thought you could check out...if you haven't already. Please note, the proper link is in the second e-mail....having one of those days!

Please keep us updated on how you are doing dear sister....
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Unread 08-10-2002, 11:57 AM
Crohn's stricture & hyst...(very long)

Hi! you have lots going on and to have to consider a hyst is a lot....I am sure there are others on here that can address the crohns....I have heard others discuss that on here.......I can sympathize with you on the bowel problems...although I don't have all the stomach pain that you must have, I have severe constipation that has got to have something to do with my hyst in march of 2000........have had colonoscopy and all is clear except for "possible" adhesions....still haven't had a lap to confirm this....

I don't know if you are asking for advice on the hyst issue or not, but, I like many on here, have said that if they had to do over again they would not have gotten the your hyst something that is being urged by the doctors to help your other problems? or is it something they think might help with the other issues?

I ask that because when I got my hyst, the thought was that a hyst would help to remedy some of the bladder issues I had...of course it did not, it only intensified them, and here i am 2 plus years later in so much discomfort and now pain that has moved to my tailbone and back......still don't know how that got involved in all of this, but it did....

I guess what I would tell any woman today, that is wondering about a hyst, is that perhaps, unless it is medically necessary, you should address other issues going on before getting a hyst...but in your case, you may not have an option.....I am probably the wrong one to even be commenting on this subject since I have had so many complications....but yet, there are those on here that have had much I guess I should be grateful on some level....but it is hard to be grateful when my life has been turned upside down and inside out because I tried to make an intelligent decision that would "supposedly" better my I guess what I say to you is this.....think long and hard about any elective which major organs are to be removed from your body.......we are all so individual, we never know how a procedure is going to affect us....what works for one person does not work for another.....and so the saga goes.....

I think that I am extremely angry at the prospect of having to quit my job and "try" to get disability just because I had a hysterectomy....what went so wrong that it caused me so much anguish? a procedure that is done everyday in all the hospitals of our country.....please be very sure of everything that you are having done.....

and one other thing, do not owe that doctor any favors for treating you....he is getting very well compensated for his services....whether you are on public assistance or not...he is getting paid.......i doubt that he is adjusting his fees.....he is the one who should be grateful that he has patients who trust him to the most precious gift we are given..."our bodies"....... do not think for one minute, that you cannot raise concerns about things you feel uncomfortable about just because you have asked for is just a fact of life...that sometimes we have to ask for it emotional or financial.....don't be ashamed of that.....I am quite sure you have paid into our tax take the help with your head held high.....and look at it as a stepping stone to a better healthier you......please take care......and keep us informed of how things go....BJ
Unread 08-11-2002, 11:58 AM
Crohn's stricture & hyst...(very long)

Hi Dawn,
Im so sorry for what you are going though. I was dx'ed with crohns several years ago. I too thought I was going to die and the GP wouldnt listen to me, he kept saying I had IBS. Finaly when I got down to 87lbs he sent me to a specialist who did the colonoscopsy and it was confirmed I had crohns. I did not have to have surgery and was able to keep it under control somewhat with a ton of meds. Crohns is a very painful diease and living in the bathroom is a bowel prep everyday!!
I had my hyst for endo and I still question whether its really crohns or endo, for some reason the crohns has been under almost total control since being on lupron before the hyst. They are both very painful but different kinds of pain, and I still have the endo , hyst did not help that at all...
Since you will be having the hyst talk to your Gyn and GI about having the surgery together. IT would be alot easier than having to go back in 2 months later.. Please dont feel bad about being on assistance, thats what its there for....let us know what you find out.... Patty
Unread 08-11-2002, 01:43 PM
Crohn's stricture & hyst...(very long)

Thank you all for your sweet answers, caring and just plain understanding. When I read back over my post, I sound like a big crybaby!

(((Patty)))---I'm so sorry you have this horrible disease, too. I got down to about that same weight, and for 2 yrs. my GP had been telling me it was all in my head, I had a stressful life, an abusive husband, 2 toddlers, it was just a nervous stomach. Once I was finally diagnosed by the BEST gi in the world, the next year was torture, but since then, like you, I've been in total remission. Up until the last couple of years.

But I ALWAYS had problems with menstruation. Put on the pill at 15, lots of different bcp, Depo. Funny, no one ever mentioned Lupron. I had never even heard of it 'til this site.

I simply can't WAIT to talk to my GI tomorrow. I know he wants to follow up with a CT and stomach x-ray, so maybe I'll get those done before my pre-op with gyn on 8-27.

Again, thank you all for listening, and understanding so well. I love this place (almost more than my REAL life lol)

Bless you all,
Unread 08-15-2002, 08:48 PM
Crohn's stricture & hyst...(very long)

Let me just start out by saying that I'm so sorry that you have this hideous disease. I was diagnosed in 1986 with Crohn's and took meds for it up until last year. I was in a lot of pain and went in to see a GI. Well, it turns out that all these years I didn't even have Crohn's but probably have IBS!!! He said it's very hard to diagnose any digestive disorder and that they can all be very similar in nature. I've had horrible stomach problems for as far back as I can remember. It's very depressing and I can sure relate to what you are going through. I looked up a web site....., and it seems to have a half way decent message board and chat if you think maybe that would be of any help to you. I wish you lots of luck and wish I could be of more help. Here's some big s and take care....
Unread 08-16-2002, 03:45 AM
Crohn's stricture & hyst...(very long)


Thank you for your response. That was sweet, and yes, I know how difficult it is to be misdiagnosed. I was for 2 yrs. They think I "might" have IBS on top of the Crohn's, which a lot of people do. I don't think so, and my disease is progressing. That's OK though, because my docs and I have finally figured out the right course of action, and I'm SO MUCH HAPPIER!! you...I became a member a while back. The best thing that site has done for me so far is hook me up with Dr. Eugene S. May @ (Crohn's & Colitis Foundation of America). Thank you for the good direction.

I'm just about to write a new thread w/all the info I received from my GI yesterday (Thursday). So, thank you, thank you, thank you to everyone who helped me through this (you, too, Jude!).

I love you guys,
Unread 11-17-2002, 09:53 AM
Crohn's stricture & hyst...(very long)

I was diagnosed with Crohn's and had my resection done by a brilliant Doctor who took great care to cut and sew my intestines in several places so I could avoid a colostomy. I have flared up since but am in remission now. I developed fistulae which are bothersome but not painful.

My GYN took my Crohn's into consideration and immediately sent me to a GYN who is also an Oncologist who is more skilled around abdominal surgeries. I am so glad she was woman enough to admit she was not comfortable working around any complicated adhesions. My new doctor is doing a LSH/BSO to deal with my fibroid and to fix my fistulae. It is a great releif to me.

You say you can't switch doctors because of insurance. Don't be fooled, you may be able to. Do your research and talk to your administrator. If you are on the county's health plan check your providers list and get the right referrals. I found you may have Dr.'s under your plan look at the following link to see who is actually covered. Check them out and talk to your insurance company.

If they are still troublesome and uncooperative do what I did when they gave me flack after my last flare up....

Don't let your insurance company cause you more health problems than you already have! Get your policy out read it carefully. Highlight the appropriate passages. Write them a letter outlining your case with the copies of your plan with highlighted passages and remind them that any additional stress they cause is aggravating your Crohn's and will cause more medical problems and expenses! Make sureto send copies to your GYN and Gastro Dr. they may just help you fight.

Good luck and let me know how it goes.

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