Confused on surgical front

[Marcy]

Ok most of you know I am new here so bear with me.
I have been reading so many posts since I signed up and had a lot of my person feelings agreed upon also some who feel totally the opposite..The wonderful world of the web, I am so grateful for all of you and this forum.

Now to the bigger stuff..
I had a resect surgery almost 5 years ago. The removed the ilium cecum and appendix. Plus I think 27 cm. of my small bowel. Now, they didn't put me on any CD medication. I am currently not only any CD medication. The surgery did help for a little while but now instead of having pain in one area it seems as if my entire colon wants to come out of my bum..
Sorry for the graphic picture.

I take imodium,have tried questrian with no luck, so they put me on Bentyl but I can only use it when I Am flaring because of the heat aspect. (I am outside a lot in the summer) other than the B12 inj 1 time a week that is it.

My confusion comes in because my last GI said once an affected area is removed the chances of a repeat in the same area are slim. SO why am I having the pain this bad again? Never had blood before,not even with bm, so now at times I can sitting to pee and no strain ,bm,or passage of gas, and low and behold a good bit of blood on paper and in toilet.

I go to see a new GI with all my records on this Thursday and I know another scope is what he will want to do, YUCK..Is it possible that CD has spread deeper than before since I was not on medication? How many of you have had to have multiple surgeries? How long once you were diagnosed did you start medication?

I have read so much on CD and everything contradicts what my last GI has told me. I understand being conservative in treatment, but I feel as if I was bluffed into thinking this was not a big deal.
Thanks in advance

 

[DustyKat]

Hey Marcy,

I am a little confused too as everything I have been told and read state that following a resection the most likely place for return of disease is the proximal (nearer) end of the anastomosis, so yeah, pretty much the same place as before.
Unfortunately Crohn's is characterised by skip areas so it is possible that it has also returned in another area. Perhaps it is at the resection site as well as in the large bowel somewhere, hence the obvious blood.

My children have only had the one resection each but they were commenced on maintenance medication immediately following surgery.

Have you tried natural psyllium husks for the bile salt diarrhoea? My daughter found the prescription and OTC meds difficult to take, cramping and bloating, but psyllium works well for her.

Good luck!

Dusty. xxx

 

[Marcy]

Good morning DustyKat

Yes I have tried the psyllium and I however do not do well on it. The bloating and everything to a point I look pregnant..lol..
Someone else suggest I try fibercon to help bulk up so I may be trying that. Thank you for the info it is much appreciated.
Now on what you said about the resect. Yes I believe it is happening there again just from the pain and other symptoms I am having mimicked what happened in the beginning before I was diagnosed..The only differences are I am having pain in the descending colon and bottom as well and then the bleeding. Sometimes I sear I can feel my intestines digesting what I eat and dangit it hurts.

I just get so self conscience about all of it. I really dislike when I am in line or something and my tummy goes to talking (as my 15 yr old calls it) people turn and stare like "Go eat something already" I just hope and pray this new GI can help with something anything at this point. I would really like to have energy and less pain just so I can clean my house or even spend some time in my gardens this spring. Sometimes I swear I think I should just flip the bucket over I am sitting on so no more accidents happen.

At what age did your children exhibit signs of CD? My youngest has an issue with constipation but he eats a lot of fruits and veggies I have begun giving him fiber choice every morning and it seems to help keep him regular. I worry out of all 3 my boys he will be the one to end up with this horrible CD and it breaks my heart.

 

[leithcote]

According to my GI the most common place for a reoccurrence is at the site of surgery. Saying that Crohn's being what it is, means that it can move around and affect another part of your digestive tract. I initially presented with an ulcerated duodenum, which luckily seemed to resolve itself. It then moved down to the commonest area of the terminal ileum. Sincerely hope you get things sorted. Tony.

 

[Marcy]

Thank you Tony hope you are doing well

 

[OnMyOwn]

My understanding is the same - that it is more likely for the Crohn's to reoccur at the site of the resection. Hence, once you've had the surgery there is an increased chance of requiring additional surgeries in the future. I just had a resection and my GI says next step is to determine what maintenance drug to move forward with (Humira or something else).

Healthy wishes to you!

 

[Marcy]

Thank you all so much for the needed information. The original GI is sending me elsewhere because he is not comfortable treating me as he has never treated for Crohn's so waiting till the 7th of March and try again
Thank you again