Help please

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

That was me who said that about the vagina becoming posterior.....we're not talking about an ileostomy anymore were talking about the anatomy !! Take a look of a side view you will understand. I know this because I've lived it first hand !! I now have a retroverted uterus and a VERY posterior vagina which all is painful. My gi specifically said its rarely one in Australia because of the high chance of surgery to follow.

Hobbes I understand your responses completely. But seriously she has a choice......to not get it done right now. I think if your financially viable etc to have it done for sure do it. But I'm seven months post op and I'm still not at work.....still can't walk.....wear a vac PAC 24/7 because NOT forgetting if she has crohns your chances of wound break own are large....crohns doesn't let your body heal 9x out of 10. I see a gastro a gi a stomal therapist for wound break down, a gyno etc all because of post op problems. I'm now looking at reconstructive surgery in the perineal wound.....more surgery. I think sometime we need to look at the bigger picture and not what's convenient at the time.
 
I also said cheerbear that fertility and being able to are two different things.....no removing such things doesn't make you infertile it's what the surgery can do post op to make it much harder to have a child. I think you need to stop looking at the infertility and looking at post op complications that make it harder. Arm yourself with all the information you can.....good n bad
 
Bottomless mummy said:
That was me who said that about the vagina becoming posterior.....we're not talking about an ileostomy anymore were talking about the anatomy !! Take a look of a side view you will understand. I know this because I've lived it first hand !! I now have a retroverted uterus and a VERY posterior vagina which all is painful. My gi specifically said its rarely one in Australia because of the high chance of surgery to follow.

Hobbes I understand your responses completely. But seriously she has a choice......to not get it done right now. I think if your financially viable etc to have it done for sure do it. But I'm seven months post op and I'm still not at work.....still can't walk.....wear a vac PAC 24/7 because NOT forgetting if she has crohns your chances of wound break own are large....crohns doesn't let your body heal 9x out of 10. I see a gastro a gi a stomal therapist for wound break down, a gyno etc all because of post op problems. I'm now looking at reconstructive surgery in the perineal wound.....more surgery. I think sometime we need to look at the bigger picture and not what's convenient at the time.
Click to expand...


Ah yes and thank you. All those of do things do need to be considered. My only point was that to delay the surgery and get another opinion is probably a waste of time- but that is in the context of deciding whether or not to actually have this surgery at all or go with a j-pouch at some point later on. All of the issues you mentioned, as well as finanacial ones, I would hope would have been discussed before the sugery was scheduled
 
i have a retroverted vagina and had no problems falling pregnant first time, (other time was due to other problems) though I have often found sex painful I think thats because of the crohn's inflamming the bowel...................In my prenatal group there were quite a few people with retroverted vaginas or utereses.
 
CheerBear, I can't remember from way back at the beginning of this thread, but have you talked to a gynecologist about this? It might make you feel easier if you do.
 
Susan you are brilliant! Thats an excellent idea. Far better than all of us just guessing.
 
hey, newbie guy here. I'm meetiting my surgeon monday about surgery too, I've had a j pouch with the surgery 18 years ago, frankly not looking forward to it again, fistulas.. ugh so close to being ok.. so close. I'm freakin out so ya normal for you to be freaking out
 
yes I was originally diagnosed with U to the C. and had the j pouch put in in two stages, now I have fistulas happening, and My hope and theory is.. that a temporary ileostomy will help the last of the fistulas that the Remicadee can't quite get to.. that's my hope. I'm in really good shape otherwise the Remicadee is doing great things for me. I'm trying to find any others that have tried this route..:dance:
 
what didnt work for you? the Remicadee? or the temp ileostomy return and back on Remicadee? not clear.codiene is my friend and so is Hash. when things getnot so good a t3 settles it right down.. i gotta get back to regular forum! I'm super new to all this, and not the most savvy guy
sorry!
 
No I'm not confirmed dont think I'll ever know that was the second opinion that came bk indeterminate colitis. No he just left it up to me too decide on what to do.
 
johnnyM said:
yes I was originally diagnosed with U to the C. and had the j pouch put in in two stages, now I have fistulas happening, and My hope and theory is.. that a temporary ileostomy will help the last of the fistulas that the Remicadee can't quite get to.. that's my hope. I'm in really good shape otherwise the Remicadee is doing great things for me. I'm trying to find any others that have tried this route..:dance:
Click to expand...


Hi Johnny, sounds like you have Crohns Colitis and not UC- fisulas do not happen with UC. When one is diagnosed with UC there is always a chance that the diagnosis is not correct because Crohns Colitis can look exactly like UC. The presence of fistulas would certainly seem to indicate that this is. J-pouhes are not done in that case because when the disease flares up it is most often in the terminal ileum, exactly what the j-pouch is made from, and that often causes j-pouch failure. However, there are people in your case you have a j-pouch made before the diagnosis of Crohns is made, and I know one in particular who has been able to keep her j-pouch for some time now because the combination of remicade and methotrexate are working. I hope the drugs work out and that you can keep your j-pouch for a long time!
 
Hi, I have been thinking about this thread and Misty's stance on Rachel's predicament. It has me wondering if all of us, following a colectomy, are advised that the stump must be removed, if not being reconstructed into a pouch?

If it is generally accepted that this is the case, then the decision is not whether or not to have surgery, but when to have the surgery. I was told it should be within ten years of diagnosis.

The treatments from the GI may contain any symptoms while we get strong enough for surgery, or delay it for any other reasons.

The GI and any medication, however, will not prevent the need for surgery.

Susan mentioned in another thread, that her recovery from the surgery was more difficult because she had delayed for too long. I recovered really well because I opted to have it done as soon as possible.

However, Crohns can cause healing problems in about a third of cases I think. The surgery can also affect the ability to conceive and carry a baby. So this surgery must not be taken lightly.

However, when told we have no 'choice', then we cannot opt out. Not safely anyway.

I think this kind of discussion is just what we need, so we can be sure of our options and hopefully make the best of the situation we find ourselves in.
 
You are right on certain points..but I need to clarify my stance a bit.

Rachel had her ileo 13 months ago. She is 'undiagnosed'. She HAS NOT been to see her GI since her surgery. She has only seen her surgeon. Therefore my advise is...get to your GI!!!!!! Even her surgeon said she didnt require the stump removal yet.

THAT is why my stance is what it is, in her particular circumstances at this time.
 
Argggghhhh conceive and carry a baby I could cry I don't want any probs/ complications in that area or any area of that matter. But I don't have a choice I have too have it done. He's reassured me my lady bits will be fine but I'm still scared. Thanks Kaz xx
 
Indeterminate colitis is the diagnosis. So Crohns cannot be ruled out, therefore a j pouch will not be considered an option.

You are right, she doesn't need the op yet. We have 10 years. But in the mean time the disease is doing damage.

Her GI will offer a temporary solution, if he can. Bad reactions to medication may rule this out, as it did in my case. But it is worth the question.

I was really asking if we are all told the same, after a colectomy? Misty, I hear your annoyance but don't understand it. I am sorry if that is the case.

I too would like to know if there is another solution so that Rachel doesn't have to go down this route.

Rachel, I have said this to you privately, but I will say it again. Please do not allow me to influence your decision. I am only telling you my experience. You will have to make your decision based on your experiences and the advice your experts give to you xxx
 
Don't worry Kaz you haven't influenced me I have made up my decision I can't do anything else. You've actually helped me coz our circumstances/ experiences were nearly the same. I'm just crapping myself lol as you can tell lol xx
 
My annoyance is based on the fact that she seems to WANT the surgery without needing it yet. As you say, there is no need for it yet. She only had ONE remicade infusion before the emergency op. So, not alot of treatment. She has had no follow up care, why I dont know. If it is UC and they find that out, there is no need for rectum removal yet and it is possible that a J Pouch will do the trick for a very long time to come.

Therefore, I can only assume that there is no need for this surgery at this time, based on her own admission of the above. And I cannot for the life of me figure out what is going on here. That is why I am annoyed.

If I have in any way got something incorrect there, I'd sure like to know. So, obviously Rachel, you can do what you want it's your body. But I sure wouldn't only be speaking to a surgeon and not a GI about something so very permanent at your age. Off my soapbox now.
 
Terriernut said:
My annoyance is based on the fact that she seems to WANT the surgery without needing it yet. As you say, there is no need for it yet. She only had ONE remicade infusion before the emergency op. So, not alot of treatment. She has had no follow up care, why I dont know. If it is UC and they find that out, there is no need for rectum removal yet and it is possible that a J Pouch will do the trick for a very long time to come.

Therefore, I can only assume that there is no need for this surgery at this time, based on her own admission of the above. And I cannot for the life of me figure out what is going on here. That is why I am annoyed.

If I have in any way got something incorrect there, I'd sure like to know. So, obviously Rachel, you can do what you want it's your body. But I sure wouldn't only be speaking to a surgeon and not a GI about something so very permanent at your age. Off my soapbox now.
Click to expand...


Hi Misty! No problem at all hon, but Rachel's diagnosis actaully changed from UC to "indeterminate colitis"- somewhere in this LONG thread she says that. The surgery originally was an emergency and that part wasn't known yet, so the stump was left just in case, so to speak. I had the same confusion, but now it all makes sense to me.
 
I am exasperated! But we are going round in circles. People on here choose every day to have a surgery, to get the disease cut out, rather than continue down the medicine route. This is no different. They don't want to have surgery any more than Rachel does.

The whole point is, if she doesn't want a j pouch, then the rectum must go. Regardless of diagnosis. Delaying the surgery presents risks. Having the surgery presents risks.

It is not however, the same as other surgeries, in that trying medication may preclude the need for surgery. This is the bit that I think you are not grasping.
 
I don't want it I've been stressing out over it how can I want it. I have had follow up care I've been to see surgeon twice one to find out diagnosis and the other time was to tell them what I had decided what I wanted to do coz of my diagnosis. I haven't been on any meds coz I don't need them I'm fine had no probs since having my diseased bowel removed. They removed the problem. I had one infusion of remicade I was due another on nov 23rd but had emergency surgery on 22nd so didn't need. If they had left the treatment any longer than they did I would no longer be here now. I'm not the only one who isn't seeing a gi my mate isn't she been diagnosed indeterminate colitis too and is fine on no meds either. She having her rectum/anus removed too. I don't want this but it's the best decision I won't ever find it out if its uc or crohns thats why they sent it away to be assessed by people who know more. Hope that helps xx
 
Hobbes, thank you, but it could still be UC if she'd get a decent GI to look at it. Again, still no need for the surgery just yet, she's just turned 22 years old.

Indetermined colitis is still very, very vague. Of course...if she wants the surgery even without seeing a GI in all this time (13 months), it's her choice.
 
Hobbes is right before they operated they thought I had severe uc but the second opinion then changed it too indeterminate colitis. They is no way they will be able to find out it was too bad I had symptoms of both and it was breaking away as well. If they can't tell nobody will be able too :/ he said they were the best bowel pathologists in the country xx
 
Terriernut said:
Hobbes, thank you, but it could still be UC if she'd get a decent GI to look at it. Again, still no need for the surgery just yet, she's just turned 22 years old.

Indetermined colitis is still very, very vague. Of course...if she wants the surgery even without seeing a GI in all this time (13 months), it's her choice.
Click to expand...


Hi Misty, I think we should start a separate thread just about indeterminate colitis (if one isn't there already). Personally, I cannot stand that term because I really don't know what it means. Serioulsy, if there are things that lead the doctor to say "I'm not sure its UC", then what other thing could it be other than a form of Crohns? The whole vagueness of that term is exactly why I HATE this disease. I think I've had about 6 different names for my illness along the way and that doesn't help make me any better. Instead I think it just makes me a little more crazy. :ybatty::ylol2:
 
Hobbes indeterminate colitis is where they can't tell which one you have and you have signs/symptoms of both diseases. I wish I did know coz I wanted to be joined up at first if it came bk uc. Hope that helps and I hate that term too
 
CheerBear12 said:
Hobbes indeterminate colitis is where they can't tell which one you have and you have signs/symptoms of both diseases. I wish I did know coz I wanted to be joined up at first if it came bk uc. Hope that helps and I hate that term too
Click to expand...


Well, from what I've learned this year one cannot have BOTH Crohns and UC. So to have symptoms of both means it's a form of Crohns. I was originally dx with UC had both colon and rectum removed, and now have Crohns inside my ileum. My doctor says I must have had Crohns Colitis originally and not that I had really, really bad luck and got Crohns later on. I would love a more medical explanation in order to undersand this better and would tag David but I don't know how to do that yet. Besides, my head hurts trying to explain it already. :D
 
Google it :) that's my answer too most things lol and I don't know how to tag either. Not both diseases just signs/symptoms of both diseases. My IBD was worst case he'd ever seen.
 
CheerBear12 said:
Google it :) that's my answer too most things lol and I don't know how to tag either. Not both diseases just signs/symptoms of both diseases. My IBD was worst case he'd ever seen.
Click to expand...



I did, and got even more. :ybatty::ybatty::ybatty:


So, you can have symptoms of BOTH, but that doesn' mean you have BOTH??? Even though with Crohns Colitis it could certainily show symptoms of both as well???? This is worse than what came first, the chicken or the egg! But leave that to the experts who answer in the other thread. My brain hurts.
 
That's why we go to GI's...to get answers. Not google.

If they can't answer, that's why we get second opinions. Diagnosis can take YEARS.
 
Terriernut said:
That's why we go to GI's...to get answers. Not google.

If they can't answer, that's why we get second opinions. Diagnosis can take YEARS.
Click to expand...



I think to make up for all this confusion I'm going to give it back. By that I mean, I'm going to med school, become a doctor, and then change my last name to Google. That way, Dr. Google will have all the answers! :rof:
 
Yeah you can have symptoms of both but not both diseases. Hmm it is worse than the chicken or the egg. I just got told its indeterminate colitis
 
Surely it means you can have the same symptoms with UC and Crohns, which makes it difficult to distinguish.

So (put very simply) if you have D, you could have UC or Crohns, not both. If there are no other findings, that identify one disease over the other it is indeterminate!
 
KazT17 said:
Surely it means you can have the same symptoms with UC and Crohns, which makes it difficult to distinguish.

So (put very simply) if you have D, you could have UC or Crohns, not both. If there are no other findings, that identify one disease over the other it is indeterminate!
Click to expand...


:ybatty:


But thanks for trying. :hug:
 

Similar threads

Sea_Star
Hyrimoz Biosimilar?
Replies
3
Views
732
dreamintwilight
dreamintwilight
Sea_Star
Forced to Switch to Biosimilar: Hyrimoz
Replies
0
Views
601
Sea_Star
Sea_Star
B
Another biologic to be added to Humira?
Replies
1
Views
310
my little penguin
my little penguin
M
Fecal calprotectin and NSAIDs
Replies
2
Views
824
Mavvy
M
T
Advice please I’m a newbie
Replies
11
Views
2K
Constipatedguy13
C

Latest posts

Back
Top