My story that has so far only left me more confused

[LiTr00299]

I was diagnosed with crohns about a year ago, a process which took my family doctor and nurse practitioner around 3 years to figure out. I started to experience symptoms when I was about 16 years old but didn't go to see a doctor until about 2 years later when I started to notice moderate amounts of blood when I had a bowel movement. My doctor decided that it was probably only haemorrhoids and not a big deal and did not decide to send me to a gastroenterologist until multiple appointments later and I became anemic, which was about a year and a half ago.

I went to the gastroenterologist and he decided to do a colonoscopy which afterwards he concluded that I probably only had ibs. But when the results came back from the biopsies they took it turned out that I actually had crohns, but that the inflammation was further up so I then had to go get an MRI.

When the MRI results came back we found out that about 5-6 inches of my lower small intestine were inflamed but that wasn't the main concern because it looked like that towards my anus was the beginning of fistula so I had to go back for another MRI for a closer look at that area.

While we were waiting for the results of this MRI I was out on entocort which worked really well until I came off of it and all my symptoms came back with a vengeance. I went to see my gastroenterologist for the results of my second MRI and from he can see he thinks there's the beginning of two fistulas and he then did and physical check and was almost positive that there were and decided he would refer me to a surgeon and start me on remicade and apo azathioprine. I'm concerned about this because when I was on the entocort my immune system was suppressed enough that a developed oral thrush which I was put on antifungals for and then I started to develop sores in my mouth which is normal for crohns but with the underneath of my tongue swelling, which has never gone back down. They put me on antivirals for but it didn't solve the problem; so I'm concerned that this treatment will have an even worse effect on my immune system but my gastroenterologist doesn't seem too concerned.

I went and saw the surgeon for my consultation and he seems to think I have a fissure and not a fistula which he prescribed a cream for to help relax the sphincter muscles so it can heal. But during the appointment I felt like he wasn't listening to me and my symptoms and just putting words in my mouth trying to prove his theory and not listening to what I had to say or what my gastroenterologist thought. While it's a great relief that the surgeon says I don't need surgery I'm afraid that something is going overlooked and I'll have the same problem I had in the beginning where it's taking too long to diagnose the problem and I suffer for it, all because they don't want to listen to what I have to say.

My symptoms are hard for me to figure out because I've been having them for so long so I'm not sure what they want. They ask me if I have pain when I have a bowel movement and I almost always do because I'm having so many that I'm almost constantly sore. Then they ask about drainage but if I'm having any it's not substantial enough for me to notice it and my GE thinks this is because the fostulas haven't opened on the surface yet and they're just starting to develop and they don't have any infection in them so no abscess has formed, but the surgeon thinks that since I'm having no drainage what they're seeing are fissures and he thinks they've been there for a long time and have nothing to do with my crohns, so I currently have no clue what's going on because these two doctors are telling me two different things but I'm pretty sure one isn't even listening to me.

I was just wondering if anyone else has had something similar happen where the doctors can't decide what exactly is happening there and whether or not there's one who I should believe more than the other.

 

[ronroush7]

I would consider going to another surgeon and see what they have to say.

 

[valleysangel92]

Hello and welcome to the forum.

Crohns is unfortunately notorious for being difficult to pin down and to get a grip on for some people. It's a very individual condition with no "one size fits all" solutions.

From what you say, it sounds like the GI is going from the scan pictures from your MRI, which will be more reliable than a simple examination. It might be a good idea to seek a second opinion, I don't know where you are but in most places this is fairly easy to request.

As for the medication, I understand the side effects are scary. Budesonide is a type of corticosteroid, it's one of the more mild ones they offer for crohns but it is still a steroid and therefore can have a range of side effects including mouth Ulcers etc.

Although azathioprine and remicade will surpress the immune system, they don't work in quite the same way as steroids and are safer to use on a long term basis. Steroids are really just for short periods to blast the inflammation and its important to use other methods to keep the inflammation under control so that you can begin to come off the steroids with less risk of a relapse.

It's a good idea to write down any concerns and questions you have and then take that to the next appointment you have so that they can work out a solution you are comfortable with.

In terms of immune suppression risks, it's not quite as big as the risk of leaving crohns untreated. Left unmanaged crohns disease can become very serious and may lead to potentially life threatening complications. I'm not saying this to scare you, just to show you the risk your gi is weighing up when he decides on treatments. They don't use medications like this if they dont think it's worth it. You will be closely monitored with blood tests etc and any problems should be quickly identified.

As for symptoms, all the things you mentioned are the kind of things you need to tell them. Try keeping a symptom diary, write down your pain levels, how many bowel movements you're having each day, any nausea etc and then you can show that to the doctors when you see them.

 

[Clevelandnative64]

ya that surgeon knows nothing about anything obviously, let alone crohns. fissures are caused by crohns disease. it was my first symptom, i would get multiple. and fissures are tears, so you probably have fistulas that havent tunneled all the way not fissures like that dumb surgeon said. fissures and fistulas are easily distinguishable on mri.

 

[DougUte]

I think you might want to see a colorectal surgeon. If this surgeon you say is a colorectal surgeon, see another one! I agree with ClevelandNative64. Fissures are caused by Crohn's disease. The surgeon is off his rocker!

As far as the long period of time before getting properly diagnosed, the same thing happened to me. I had 6 years of being told it was IBS. Even with multiple visits to the ER. In fact it was a ER doc who first told me it was Crohn's. When they can't figure it out they often dump it off as IBS.

 

[ronroush7]

I think you might want to see a colorectal surgeon. If this surgeon you say is a colorectal surgeon, see another one! I agree with ClevelandNative64. Fissures are caused by Crohn's disease. The surgeon is off his rocker!

As far as the long period of time before getting properly diagnosed, the same thing happened to me. I had 6 years of being told it was IBS. Even with multiple visits to the ER. In fact it was a ER doc who first told me it was Crohn's. When they can't figure it out they often dump it off as IBS.

Yes