Hi all, my story to date

[Rickgren]

I guess my symptoms started a few years ago with small amounts of blood in my stool and while doing my "paper work" . At first I was scared to even tell my wife because I was thinking the worst. I talked to a friend of mine (and used web md) and came to the conclusion that it was an anal fistur and that was that. About 2 years ago I had a major heart attack and got major heart damage from it. When I started taking the meds for that (plavix being one of them) I noticed more and more blood. Then I also was getting bouts of constipation and major cramps in my lower torso. I also noticed during my "paperwork" after or after an attempted BM I'd have blood and what looked like to me puss. (sorry for being gross). At this point since I was seeing doctors all the time I thought I might as well get this looked at too. So I dragged my wife with me for support (she's great at that) to go see my doctor. This time I was sure it was a thromsbored hemorrhoid (again with the help of web md) so the doctor has me drop trough,get on the table on my left side and she has the tools to do a hemorrhoid. She spreads it open and say's "what the hell is that?" I said "I don't know because I can't see it from here" she then asked my wife to look at this. She told me later it took 2 weeks to scrub her mind of it. From what she told me it was a trench inside my rectum. So the doctor sets me up with a surgeon to take care of it. We go see him, again with the drop your pants and get on the table. Thank god this guy had the smallest hands I ever seen. He says I need to get a colonoscopy first and to get it biopsies. So I go to his office to get looked at. Same story drop pants get on table ect.ect. They set the appointment up and off I go to get my movi-prep,that's another story. Anyway I get my colonoscopy and I got to my family doctor for the results. My doctor reads the report and it says everything is normal. Now she's scratching her head and says that thing was anything but normal,does it still hurt? Hell yeah it does. Hop on up and drop your pants "again" she looks and says nothing's changed,this can't be your results. She call the proctologist and informs him that this report isn't me so I have to go get another colonoscopy. So,I go down and get more movi-prep. I had a few complications this time because I had to do both batches in one evening instead of one night and one the morning of. We think it was the salt. Anyway we go again and this time we see the surgeon (the one with the small hands) and he tells me I have an abscess in my rectum. I ask him how did I get an abscess in my ass? He says oh from your crohns disease. I'm like what the hell is crohns disease ? He tells me that's what the biopsy said. So we have the surgery about 3 weeks ago (and yes,more movi-prep) I like it more than most Japanese beer by now. I went in and he says I'm healing nice but it seems to just as bad or worse. Oh, and i have two more ulcers,sores in my rectum as he put it . I read up some on crohns and i didn't think I had the same symptoms of crohns.I still have the following

Very constipated not a BM for 4 days now but I feel like I got to go all the time.
When I try to go its like trying to give birth to a broken beer bottle and it looks like a shark attack in the toilet.

It's hard to urinate now as well.
I "leak constantly "blood and pus not feces"
I have cramps low in my torso belly button and lower.

Do these sound normal for crohns or anything else out there? I'm thinking on getting 2nd opinions on this, but I'd like to see her first as I have no idea what I'm dealing with here and any help would be welcome. I don't think there is anything normal with what I'm dealing with but I'd like to get it fixed. I don't want to start eating soup for the rest of my life or get a Le Maze coach every time I have to have a BM.

Thanks for your help

 

[mikeyarmo]

Welcome to the forum Rickgren!

I am sorry to hear about all the trouble you have been having over the past few years.

Crohn's impacts people in many different ways. While you may have read up on people who suffer from diarrhea, constipation is also a symptom that impacts a minority of people with Crohn's Disease. I myself never suffered from diarrhea but suffered from constipation when my Crohn's was at it's worst.

I have not personally suffered from an abscess, however I believe leakage of pus is common with them. I used to also suffer from having blood in my stools.

Lastly, cramping is quite common for people affected by all forms of Inflammatory Bowel Disease (including Crohn's).

Having Crohn's does not mean you will have to eat soup for the rest of your life, but many people do change their diet to try to manage their condition or just because they identify trigger foods that cause them to suffer the most symptoms.

There is nothing wrong getting a second opinion, however that might mean having another colonoscopy. What is confusing to me is if the surgeon knew you had Crohn's how come this was not passed along to your family doctor?

We have a dedicated forum for Fistulas, Fissures and Abscesses that you might want to look into for more information or to ask any specific questions you might have.

I hope you find the forum useful and that you get some answers soon that can help you regain your health.

 

[Rickgren]

I was kinda shocked by the surgeon knowing and my fam doctor not. It seems like my surgeon and proctologist play a lot of golf together .
I think this forum will help a lot due to the fact that nobody I know has every even herd of crohns and they are mostly smartasses. (or ********* dep on how you look at it)

What I find strange is that it effects everyone different and in different areas. I was told mine was mostly in my rectum so I guess that's why I don't vomit or the weight loss. I do get tired but I think that's from the heat issues.

I'll check out the rest of the site for other info like diet,relief thinks like that.
Again thanks

 

[Angrybird]

Hello and welcome to the forum Rickgren. Definelty have a good nosy around the forum especially at the above mentioned Fistula's forum as I think this will have some helpful info for you. Also have you been given anything to help with the constipation, in fact have has anything at all been mentioned to you about how they plan to treat your crohns or have you go an upcoming appt for this?

I do hope you can be feeling better soon, pls keep us updated on how you are getting on.

xxx

 

[Rickgren]

I'm not to thrilled with my one doctor. I called his office this morning and hopefully he will call me this afternoon and let me know where we go from here. I'm drinking as we speak magnesium citrate (otherwise known as colon blow) I'm hoping this will get things moving. Also on Norcos for the pain. They don't seem to work all that well. I also stopped taking my plavix till I get this blockage under control and the bleeding.

 

[Angrybird]

Hope the doc gets back to you quick, not sure what time it is over there but perhaps give them a nudge if you haven't heard anything soon. Also is it 'safe' to stop the plavix with regards to your heart damage?

 

[Rickgren]

I'm sure my cardiologist would sh$t a purple Twinkie if he knew, it's just the blood amount these last 3 days is enuff to scare me. It's not just a few drops its where when you look in the toilet you can't see the bottom because it's so red.
I go in next week to scripps in San Diego next fri for another angiogram and if I need another stent, I get one. I have to be off the plavix for that procedure as well. If I get another one (I have 3 at the moment) I'll be getting a medicated one instead of the bare metal ones. Def will need the plavix after the procedure on the medicated one,but slim chance of my artery walls growing over them.

I've noticed a lot of post here with people's families and doctors acting like crohns isn't a big deal and to get over it. I can tell you being someone with 52% heart damage and I get out of breath just walking to my mail box, this crohns is bugging me way more than my heart. If I'm not doing anything active,the heart doesn't bug me at all. This crohns just makes me feel like **** almost all the time. And from what I read here there are a lot of folks way worse than mine.

I went to some boat races this last weekend camping for a boat I sponsor. I've been invited a lot of times but always said no wasn't feeling up to it ect.ect. I decided to go and had fun except for the flare up and cramping and just feeling like crap. Had one guy do the old "my sisters boyfriend's cousins mailmans best friends plumber has that and he's great". Well,told this guy how the hell would you feel if it always felt like you had to take a crap and couldn't ,was all cramped up and when you decided to give it a try all that came out was blood and tears.

Sorry didn't mean to go on a rant,just so frustrated with this and it def messing with my life.

Got a quick question though, having a weird twitching in my right eye lately and my vision is getting worse. I had LASIK done about 10 years ago and I started wearing glasses about 2 years ago. In the last 3 months my vision has gotten a lot worse. Is there a connection? Just wondering.

Again thanks for the ear

 

[Angrybird]

Rant away hun, that is what we are here for I'm afraid I cannot help with query about your eye but I would seek advice from you GP/optician if it continues.

 

[David]

Hi Rick and welcome. I'm glad you found your way here. Questions and suggestions:

1. Are you on any medications yet? If not, when do you see your GI next so you can start a treatment plan?

2. I would strongly suggest getting your vitamin B12 and vitamin D levels tested. People with Crohn's Disease are commonly deficient.

3. Get a referral to an opthamologist from your GP. Not an optometrist but an opthamologist, an eye DOCTOR. You want to get your eye checked out. I'd suggest first calling a few and asking what their experience is working with people who have Crohn's Disease and eye issues. CD can affect the eyes so you want to rule that out.

We're here for you bud. Keep us updated.

 

[Rickgren]

David,
I don't have a GI yet. I'm waiting for a call from my proctologist (been waiting since last thurs) and I have a call into my family doctor to get a GI. I never even know what one was till I was on this form. Hopefully I get one tomorrow.

Is it just me or do doctors tend to take their sweet time on things and also a lot of guess work.

Thanks


---
I am here: http://tapatalk.com/map.php?j0djnh

 

[David]

Unfortunately some do tend to take awhile. There are a ton of truly fantastic doctors out there though.

 

[Rickgren]

If you know of any in the riverside ca area let me know

Sent from my SAMSUNG-SGH-I717 using Tapatalk

 

[David]

We have a few member recommended doctors in your area in our doctor directory.

 

[Rickgren]

Thanks, found one right down the road Dr Wen. Will be calling him tomorrow


---
I am here: http://tapatalk.com/map.php?xllfhx

 

[archie]

Hiya rick sorry about ur ongoing saga u def need a GI and treatment soon. I also suffer constipation with crohns and often have to take stuff for it and along with that I get strong cramps and feeling that I need to go I only suffered diarrhea when I had an abscess. U need your bloods taken to check for deficiencies as David suggests as with so much blood loss u could be anaemic. I cant take painkillers at all as they mAke the constipation a lot worse so review all ur medication ur on and take it with u to the gi. Good luck and I hope u get sorted very soon.

 

[Rickgren]

Thanks Archie gonna call tomorrow and set an apt asap

Sent from my SAMSUNG-SGH-I717 using Tapatalk