Around a 20-minute read
I don’t know why I come and go but, well, what a couple of months it’s been! Not what I was expecting that’s for sure! So I thought we should have a little catch up on whats been going on!
It all started a couple of months ago when my doctors insisted on some routine blood tests to check all my levels before issuing my prescription – this is a different issue where they can’t seem to log my tests correctly and then keep telling me that I need to go for my bloods doing before they will give me my medication – this is happening every couple of months at the moment which isn’t ideal! A few months ago they also took my stoma bags of my prescription until I went for my blood test, not sure what difference my bloods make to needing my stoma bag! I had to call to explain this to them, they said the doctor needed to review before they could issue them to me… I’m not a rude person but I did highlight to them that unless they want me to poo free following then there isn’t really much for them to review… anyway I digress. In the blood tests they noticed that my hemoglobin was low and that my iron was slightly low.
They asked me to go in for an appointment as they wanted to check me over, I told them I was fine, just a bit tired but that I had been ill a couple of weeks before so I wasn’t concerned. They asked the usual questions, did I think I was in a flare, had I noticed any other symptoms, and they felt my stomach. As expected all was fine.
The doctor then asked me to go for some more bloods just to check if it had to do with me being unwell the few weeks before and again my levels came back lower than expected. The doctor wasn’t really sure what to do so he advised he would be writing to my specialist and that they would decide the next steps.
I got an appointment through for a telephone consultation with my specialist and was asked to go for some more blood tests just before the appointment, which I did.
Fast forward to when I finally had the telephone appointment, and as expected she wasn’t too concerned about my hemoglobin. It was still low at 85 when it should be over 100. But she thought this could just be due to my medication and my iron. As someone with Crohns and someone who takes immunosuppressants my hemoglobin often drops – my doctors aren’t great so it doesn’t surprise me that they have never picked up on this before.
My iron is where the real issue was! Your ferritin should be above 30 and mine was 5! Now my iron has always gone up and down, but never like that, never that low. She asked me how I was feeling, and I had been really tired and lethargic, but hadn’t put two and two together but when she said it, it all made sense. I hadn’t had any energy for anything, everything just felt like such a massive effort and hard work and within 5 minutes of doing anything I felt drained. She advised there and then that I was going to have to have an iron transfusion and that she would get the appointment sorted and that they would be in contact with a date. She also said she would speak to my specialist doctor and would call me back within the week with a further plan.
Later that day she called back, I know it’s not what you are going to want she said, straight away I knew it was some sort of test and I had a funny feeling I knew which…
We are going to need to do a colonoscopy and endoscopy, great, I was right, the two tests I hate the most.
I have past experience with both these tests and I just really struggle with them and find them unbelievably painful and unbearable.
I did have a few questions for her as it was the first time I was having a colonoscopy since having my stoma. She advised that as they wanted to view my large intestine it would still be up the bum and that it wouldn’t be any different to previous ones I have had.
I thought it would be a couple of weeks until I heard about the appointments but I got a call the day after for all my appointments, the week after – great not even time to get my head around it!
When speaking to the pre-assessment lady she said it would be an enema instead of the normal liquid to drink (this is what you normally have when having a colonoscopy), as if I had the liquid it wouldn’t reach my large intestine to clear it out anyway as it would all just come out through my stoma. The enema has to be inserted straight up the bum, so it would get straight to my large intestine and clean it out – as I don’t use my large intestine there wasn’t really much to clear out, just the mucus it naturally produces.
The morning of the cameras came, I was extremely nervous, as mentioned before, my previous experience with these tests have been bad. I had to get up early to do the enema, well the issues started here! As I haven’t pooed out my bum for 3 years the anus has got tighter, even just trying to put the enema up hurt so I knew the test was going to be worse than ever. I only managed to get a quarter of the liquid from the bottle squirted up my bum before I had to stop, I felt like I was going to poo myself there and then so had to run to the toilet and as expected it was all just mucus that came out. This went on, on and off, for about an hour and then it was time to get ready to go to the hospital for the appointment.
I have never wanted to move to my local hospital just due to preference, so my hospital is about 1hr away. About 20 mins away from the hospital my stomach went again and I needed the toilet, luckily there was a McDonald’s coming up so we managed to stop and I ran in!
We finally arrived at the hospital and I was only waiting about 10 minutes before they called me in. They went through what they would be doing and asked me what pain relief I wanted – not even a question, I wanted it all. I ended up having sedation (Midazolam), gas and air (entonox), throat numbing spray and pain relief (fentanyl).
Once I had gone through all the pre-assessment and they had given me all the information it was time to get ready. As I was having cameras both ends I had to get undressed apart from my bra, and put the lovely paper knickers on and the hospital gown. I was only waiting for about 5 minutes and then they came to get me.
When you go into the room it can be a little daunting when you are already feeling very nervous. It’s just a room with a bed and lots of machines and screens. They double check what pain relief you want, and again I confirmed I wanted all of it.
They let me know they were going to start with the throat one, then the colonoscopy and then go in through the stoma. Eh, through the stoma, that hadn’t been discussed, in fact I specifically asked my specialist and they had said it wasn’t needed. I told them this and he said he thought it was best to do all 3, I said just the other two as agreed was fine.
They started getting me ready for the throat one, gave me some sedation and then gave me some throat spay which you swill around your mouth, gargle and then swallow, to say it didn’t do much would be an understatement. They started the examination and it was awful, just as bad as I remembered if not worse! It’s hard trying to ask them anything as you can’t talk, but I just kept trying to ask them to stop and gipping. I could not stop gipping.
One thing I have forgotten to mention is that they have someone in there to look after you and comfort you, he was so lovely and just kept stroking my face telling me it was ok and was nearly done. He was so so nice to me bless him, but it really wasn’t helping. I just wanted them to stop. I carried on gipping, crying and trying to ask them to stop but we eventually managed to get to the end of the examination.
Next up was the colonoscopy, brilliant here we go again. Before the examination, they put their finger in your bum to see how tight it is. You have to remember that I haven’t used my bum in over 3 years. It was so painful that I said to them that I didn’t think we should continue with the examination as if that was hurting that much, that I had no chance with the camera. They said it would be ok and gave me some more sedation and put some Instillagel (a gel containing a local anesthetic) in with their finger. I was also able to have gas and air during this examination which i wasn’t able to have during the throat one and this is when they gave me the Fentanyl. It was still painful so they gave me more sedation. We managed to get through the test but in alot of pain
He mentioned the stoma again and that he thought it was best to just do it while I had already had so much sedation and that there was a chance that if I didn’t I was just going to have to come back again to have it done, ok I said, lets just get it done, I really didn’t have it in me to argue, and if there was even a chance of me having to go back and go through all this again it really wasn’t worth it, lets just get it all done I thought.
They went to take my stomach bag off and I noticed how solid it was and how full of air it was. It wasn’t something I had really thought about, but all the air that they put in during the other two tests was completely blowing me up and blowing my stoma bag up.
They started to put the camera into my stoma and to be honest, it was the least painful of them all. I don’t know if it was because of all the sedation or that I was still able to have the gas and air but it was done and over before I knew it. He had even let a student start it but she was struggling to get the right angle so he took over and even that wasn’t too bad.
After all the tests are finished they take you through to a recovery room. They left my stoma bag off as they said to let some of the gas come out. All the air that they put in and blow you up with gives you horrendous bellyache and wind. I said to one of the recovery nurses that I thought I had pooed myself, which in hindsight is ridiculous cause I can’t even poo out of my bum. She checked and said I hadn’t and that it was just mucus and blood that was coming out, great! I had tissue on my stoma still and that was also covered in mucus and poo. After a while, they asked if I was ok and ready to sit up which I was. They left me sat up for a bit, in the mucus and blood nevertheless, and then they asked if I was ready to get up, yes get me out of here! They put a new stoma bag on for me, that leaked straight away cause of the gas still coming out and blowing it up. And then they brought me some wipes and left me to clean myself up and get dressed.
Once I was dressed I was able to go to the next recovery room for a drink and some biscuits while I waited to be discharged.
The nurse came to discharge me and took me into a room to give me my results, which were as follows.
My endoscopy was overall normal, they took some biopsies just to check. They did notice that I had some reflux, and have noted that I may benefit from a proton pump inhibitor – this reduces the acid in your stomach. They also found a hiatus hernia and a duodenal polyp.
My colonoscopy again was overall normal – they did note that if I need a future colonoscopy I should have formal dilation and that this should be done under general anesthesia. They did find some mild inflammation – this does concern me a little as I was hoping there would be no inflammation now that I’m not using my large intestine. My discharge letter also mentions loss of vascular pattern and some stenosing in sigmoid but I have no clue what either of these mean! They also noted that the muscles are overly tight and again took some biopsies.
The camera up my stoma was all fine!
Once I had been given my discharge letters I was able to ring my husband to come collect me. I wasn’t able to leave until he got there due to having had the sedation.
The sedation definitely helps a little but I wouldn’t say it’s as great as people say, the difference it made for me wasn’t amazing and it definitely didnt make me forget the procedures they had done.
I went home, took my leaking stoma bag off and got a bagless shower, what a treat! And then spent the rest of the day feeling sorry for myself, with belly cramps and sleeping on and off.
The next day was another early start as I was going for my iron transfusion. I was only there for about 1 and a half hours in total. When I got there I got a seat and they did my blood pressure and temperature and then they put a cannula in. They did the iron infusion, then a saline solution, then I had to wait for a little bit to make sure there was no bad reactions and then i was able to go. During it I was fine, just my mouth that tasted weird during the infusion. Later on in the day though my husband noticed that my eyes had gone very yellow and bloodshot, but thankfully it passed after a couple of days.
Originally I was told that I would need 2 iron transfusions, 1 and then another a week later, but when I mentioned this while having the test they advised that I now only needed 1.
After the iron transfusion, I was tired and it took a couple of weeks to feel any more energetic. The energy lasted about a week and then it faded again. I had some follow-up blood test since the infusion to see if my levels have increased, so we will see.
I do feel very tired and lethargic so I’m not sure that my blood levels have increased sufficiently.
Just last week I got a letter from the specialist saying that my folic acid is lower and that my doctor can prescribe some tablets – but as far as I was aware you aren’t meant to have folic acid tablets if you struggle with low B12 which I do and I have injections for every 12 weeks, so I am really confused as to what to do.
I also got another letter saying that my vitamin D is low and that I should get an over the counter tablet for this.
Both of these can cause tiredness and fatigue but I really don’t think my iron has gone up enough. I have left a couple of messages for my specialist as I really want to get to the bottom of it all, but they haven’t called me back as of yet. I also still haven’t heard about the tablets to reduce the acid in my stomach that they suggested during the cameras.
I need to set up an appointment with the doctors to go through it all but as mentioned before they aren’t great and I’m not sure that I will get the advice I need from them – they normally pass me back to my specialist (which I understand as they are specialists in the area I need), but at the minute I don’t seem to be able to get answers from them and I don’t want to just take tablets that could make something else worse (in this instance my B12). I really need to get to the bottom of it all, along with how my Iron is doing. It’s the first time ever I have had concerns with my specialists, normally they call you back pretty quickly and are amazing, so hopefully it’s just a fluke and they come back to me this week!
Please let me know if youv had any iron issues and if so what helped?
Please also let me know if you have had folic acid issues and also suffer with low B12 and what action you took?
Much Love
Chlöe x
Me, My Crohn's and I 