WAY WAY TMI

Well, I guess it’s time to write the story of what’s been happening to me (for posterity) and make some explanation for the long radio silence. WORD OF WARNING: grossness and ugly bodily functions ahead. Read at your own risk.

I was sick on April 30th with stomach issues (not throwing up), gassy/bubbly pains and loose bowels. It basically continued from there for weeks, getting worse and worse until I was basically only shitting blood, and terrible diarrhea. No warning, multiple times day and night. Got more and more tired over the weeks and more and more dehydrated. On May 19 I sent a message to the healthcare clinic asking what to do, and had a nurse call me and ask a million questions all of which I answered no to. She conferred with the doctor there and then sent me a message to come and fetch a stool sample collecting kit. It’s 20 minutes to Löberöd, and leaving the house was starting to feel very stressful. I had already been working from home quite a bit due to the problem, with my manager in the loop as to what was happening.

Fetched the kit which was 4 tubes to fill over the course of 3 days. Took them back on the 3rd day to drop them off. They have to send everything to Lund, so further delays. I found Probi probiotics at the pharmacy and also bought Dimor (Imodium), plus started drinking ProViva sugar-free juice, also meant to help with gut bacteria. Was going to start taking the Dimor tablets but read the package and saw that it said they should not be taken if there is blood in the stool, which I had had for weeks. 🙁 When I got to the clinic, I told the nurse that I really wanted to talk to someone but was told they were all booked. I said I had spent the week dealing with the sample kits and had not yet had ANY HELP, almost crying. She went and talked to a nurse and came back and told me that I could take Dimor/Imodium.

May 26, going on 4th week of blood diarrhea. At 5:48 pm got a message from one of the nurses at the clinic that my results had come, and how was I. HOW WAS I? FFS. Really shitty, literally, that’s how. SO ANGRY. Couldn’t call them as they were already closed, and of course neither she nor anyone else answered again in the chat. Checked 1177 (the national medical online site) and interpreted my journal results to say that the tests were negative for bacteria and a new test was recommended because the cause could be parasitical. The next day I had an appointment to see my diabetes doctor but was hoping to catch SOMEONE while I was there to talk to and get some antibiotics or SOMETHING that would help. I was feeling that if I had to wait for another test sample to be collected and sent before I get any treatment, I would lose it.

To make matters worse all of this was falling during the holiday season in Sweden with several long weekends in a row, and days off, which also meant that the labs were closed and things delayed even further.

Was late for appointment with Dr Jakob because I couldn’t leave the bathroom and when I did get in the car and drive away, I had to circle the neighborhood and go back in again. 🙁 Got there 15 minutes late but it was okay as he was also running late. SUPER STRESSFUL. He had been informed by the nurse who I had been chatting with earlier in the morning (who was SUPER unhelpful) so he was caught up on what was going on. After I told him I had just had a colonoscopy in October which was clear, no polyps, no cancer, he said that was good because it meant we could rule out cancer as a cause of this dysentery. He also didn’t think it was being caused by any of my medicines, and according to the test results it’s not bacterial. His suspicion is that it’s a parasite of some sort. Went to the lab for a finger-prick and to get another sample-collecting kit. Then waited for him to come back to finish up. Blood values from the finger-prick were all normal. I was there so long that I had to go to the bathroom and was able to fill the collection tubes and drop them back off in the lab. It was another a short week however, so was doubtful I would get results before Monday. They would not give me antibiotics until they could determine the cause. If it WAS a parasite, I would get antibiotics (which could have stopped this 2 weeks ago!!). He also told me to start taking Imodium 3 pills in the morning and in the evening.

On May 31, I wrote in my journal that Imodium 2x a day was not making any difference, just adding bloating and gas to my misery. Called 1177 to see if they could provide a referral to a stomach/internal med doctor but they can’t do that and referred me back to the clinic. I sent a new message requesting a referral. They answered the message saying that it is recommended that your regular doctor handles your case. I asked them to please have Dr Jakob call me then. No answer.

On June 3rd, I called and left a message and the automated service said they would call back at 10:15. I talked to Anette before that and she showed me the website for the Infektionsklinik in Lund that has an actual phone number where you can call and talk to a nurse. So I did. The nurse I talked to was super kind and was horrified that I’ve been suffering for 5 weeks without a referral. I gave her permission to look at my journal as I said I was still waiting on test results. She said they were actually there, which I didn’t know, and couldn’t have interpreted anyway, and the clinic hadn’t sent them to me at all, despite that they had apparently been there since Monday morning or even earlier. She said the parasitical tests were negative, as well as bacterial, so back to square one. She tried to help me do an “own referral” on 1177 but neither of us could find where to do it and it seems to have disappeared from their site. She told me that when the clinic called back to DEMAND a referral to the mag/tarm/internal medicine department because if it is not bacterial/parasitical the infektionsklinik is not the right place to be. So I did, got a very sympathetic nurse named Malin who was also horrified that I had not received any help and that it was over 4 weeks. Still solid blood, very little actual stool, and still constant. She set up a telephone appointment with Dr Jakob for the next afternoon (he was not in that day and that was the earliest time, and I could not leave the house so could not go to him), and I’m to demand an EMERGENCY REFERRAL. She also helped me cancel my physio appointment with Tilda on Thursday as I was completely housebound at this point.

Continued working from home. My team and my manager have been amazing through the whole ordeal. I am super lucky and was very glad that I was still able to work and keep up with my job.

Talked to Dr Jakob who called at 1:15 pm and told me that my choices were to wait for a time from the emergency referral to a colonoscopy, possibly next week or longer, or to go to ER with a non-threatening condition, wait for however long it takes (typically 8+ hours) and hope they admit me and start some kind of treatment. I lost it completely and yelled at him. He told me it was my decision to make and I said you’re my doctor, you’re supposed to advise me, which one of these equally shitty options would you choose?? Silence. Then he said he would talk to a colleague and call me back. Turns out his colleague works with gastroenterology AT THE CLINIC. TOTALLY BOGGLED. WTAF. When he called me back, he offered me a time the next day to meet her at 1 pm, to have a rectoscopy and get advice. So angry and upset I couldn’t see straight. I also told him that if it turned out that antiobiotics weeks ago would have helped that I was going to kill someone. He got all stuttery and started to say that there was no sign it was bacterial so no indication of antiobiotics and I cut him off and reiterated, “I’M JUST SAYING.”

Very tired and dehydrated by this time. Anette, my manager, went to the pharmacy for me and brought Dimor which I was running out of, because Anders was in Landskrona for work and wouldn’t make it back before they closed. She also brought me Salivin, small “candies” for helping keep your mouth hydrated which I had never heard of. Basically like Tic-Tacs, but gummi, and sugarfree.

The next day I met with Dr Unni Frost at 1 pm at the clinic. She performed a 15 cm rectoscopy, asked a million questions, and had me provide blood for several tests, plus palpated my stomach. She suspects colitis. She’s been discussing my case with the gastro unit at the hospital about appropriate treatment. Recommendation to immediately start oral Mesalazine in combination with local treatment. Prescription for these. Telephone follow-up after the weekend. If no improvement, oral cortisone. Sending referral to gastro clinic. I was crying before I left the appointment because I was finally getting actual help from someone who knew what they were doing, had actually examined me, and started a treatment plan. If no improvement by Tuesday (planned telephone follow-up) she will up the treatment to a cortisone-based prescription. If I developed fever I was to go to ER immediately. Colonoscopy still to be scheduled but she said it should be a priority given the history/conditions. Starting the meds that night (Thursday), so hanging on until tomorrow.

I was very tired all weekend (another holiday weekend), with very little energy, but by Sunday I was feeling a bit better and much less dehydrated. On Tuesday, however, I had a bad morning, upset stomach, lots of diarrhea, still lots of blood. Didn’t feel well at all. Follow up call from Dr Unni at 10 am. My blood values also showed massive infection, and since I am not much better, though not as dehydrated, she thinks the cortisone treatment needs to be started. She asked me to come in ASAP for further blood tests and to meet with her. I got to the clinic at 10:30, had blood drawn for more tests. Met with Dr Unni and explained how I was feeling, even though I had felt improvement on Sunday, I had been super tired, no energy, and the symptoms continue. She talked to the stomach/intestine department at the hospital and they wanted me admitted. They would call me as soon as they knew when there was a room/bed for me, either this afternoon or first thing tomorrow morning. The cortisone treatment will be handled with IV (and because it raises blood sugar, they want to keep an eye on that as well). They would also possibly do the colonoscopy while I’m there. 1-2 weeks sick leave. UGH!! Also of course, got the time for the ’emergency referral’ colonoscopy which is for June 18.

On June 11, this past Tuesday, I started the cortisone tablets in the morning. Admitted to the stomach/intestine department at Malmö hospital at 2 pm. Smooth check-in, private room with toilet/shower. Met with the nurses and the doctor. Changing to cortisone injections as well as continuing the Acasol and the suppositories that Dr Unni started me on. They have also added blood thinner and stopped my diabetes tablets for the time being as they will be keeping a close eye on my blood sugar levels (cortisone can cause it to spike). They are not sure about a colonoscopy while I’m here but can give me a prescription for an easier laxative to take for the appointment on June 18. They are providing my Gabapentin pills. Will be here at least to the weekend, so will see. Had a good day, and no abdominal movement after I left the house until 11 pm!! They said it was probably just an exception since I had plenty of toilet visits during the evening.

Today is June 13, my third day here, and nearly a month and a half since I was first sick on April 30th. Slow improvement so cautiously optimistic, but have gone from bloody diarrhea to almost nothing, which isn’t really ideal either. Haven’t had an actual REAL POO since then. TMI, I know, I know. But I did warn you.

I’m sleeping terribly due to getting up multiple times to go to the bathroom, and the unbelievably loud piercing screams of seagulls that live all around the hospital and are actively screaming all day and all night, to the point of ridiculousness. I don’t know how anyone in Malmö ever sleeps. Plus I get woken up at 4 or 5 am to have blood drawn and it’s very hard to get back to sleep again, though I did manage it this morning.

The first afternoon I was here, Martin, Debbie, Camilla, and Karin all came to visit so we had almost a little party in my room, which was lovely. Yesterday, Karin had hoped to come but ended up not being able to get away from work. But Anders, who has been in Jönköping all week came home yesterday and came straight to the hospital to visit me, which was great, as I’ve really been missing him, and he’s felt really helpless to do anything. Debbie and Camilla are supposed to pop in for an hour this afternoon, and hopefully Martin might be able to stop in as well or possibly tomorrow. I got online with work this morning and said hello and gave everyone a status update. I miss my team and wish I could do some work at least to keep me busy. All I am doing is reading and making crossword puzzles and playing iPad games in between meals (food is decent) and nurses coming in to do blood sugar checks and other controls, plus give me the cortisone injections. They are stabbing me in the thigh for the blood thinner and it hurts and keeps bleeding there later.

So that’s the long, horrible story of my ugly intestinal inflammation, which is still in progress, and which is probably going to be diagnosed as colitis of some kind, and which they say the colonoscopy will confirm. It’s an auto-immune disease (not sure why I ended up with it as no history in the family) which means I’ll be a patient here for the rest of my life as it’s something that will most likely continue to flare up and have to be kept under control, oh joy.

The only good thing about this whole ordeal is that I have lost nearly 10 kilos. 😀

Mood: optimistic
Music: SCREAMY SEAGULLS