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valleysangel92

valleysangel92

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hey all.

As some of you know, I had a hemicolectomy back in June, and it seemed like everything was going well. I was almost pain free except the pain from the surgery itself, I was steadily gaining weight, had no more constipation. Since then I've had a lot of joint problems, but otherwise my crohns seemed to be giving me a bit of a break.

Recently though, things haven't been quite so good. For the last 4-5 weeks I've been having bouts of D (which I've never had before, normally i'm the opposite). It happens 3-5 times a day anywhere from 2-5 days in a week. Its often watery and sometimes pretty explosive.

I'm also experiencing pain in the lower right side, in the pelvic region, which is worse just before a bowel movement, during a bowel movement and sometimes for about half an hour later.

As well as this, my last blood tests showed I was low on ferritin (but not aneamic yet) but I'm not able to use the prescription iron meds since they make me ill, and we've discovered the otc ones do too. So I've been getting a lot of dizzy spells and headaches.

Ive been re-reading my colonoscopy report from last year, and there are some areas which it says are inflammed which I dont think were removed during surgery and would be about where I'm getting the pain now. Before surgery I had prednisolone and entocort, and I've not been given any maintenance medications. I'm not due a follow up for another 3 months, although I think my GP might be able to get me in sooner if they feel I need to be seen.

I would be very greatful for any suggestions and opinions. Part of me is still sat in my bubble hoping I'm just over thinking things :tongue: .
 
Hi Valleysangel. My heart sank when I saw your post show up. Sending you my support and a big hug. I hope this is brought under control quickly.
 
Thankyou both for the support.

I just managed to get an appointment with a doctor for 11 am UK time, I don't recognize the doctors name so can't say how much good they will be. If they turn out to be unhelpful I'll be waiting until at least next week or the week after to see one of my regular doctors. I did explain to the receptionist that I need continuity but apparently most of the doctors are on annual leave.
 
Just got home. Have a 5 day course of pred (6x5mg daily, no taper) and have to go back if they don't clear things up.
 
Only 5 days? That's a very short run of pred! I would imagine that's too little time for it to get the inflammation under control, but hopefully it gets you some relief for a few days at the very least. I'm so sorry to hear you're potentially flaring, and I hope you can get things under control quickly and have a nice long remission.
 
I feel your pain. I am experiencing those exact symptoms. Try and get back in to your specialist. I have had those symptoms for over a month now and it makes you weak, dizzy, emotional and hard to keep weight on. If you get in before I do Tuesday, please write me and let me know what they come up with. I will be going in Tuesday the 26th, and will tell you what my results are. I have pain lower right side, cramping bloating etc and D. Fairly unpleasant. Good luck sweetie!!
 
We are on different time zones, Im 11 hours behind you. They gave you pred for only 5 days? What did they determine was the problem?
 
Yeah only 5 days, I only saw my GP and they don't really give anything else other than pred and maybe pentasa, and they wanted to try a short dose to see if it would do anything.. Although I am skeptical.

They said they think there's inflammation since there was inflammation there when I had my colonoscopy, so maybe it's come back or it just never really went. I have instructions to go back next week if they don't do anything, if I do then they will refer me back to the GI.
 
As much I respect my GP surgery, I think personal I would phone IBD Nurse for advice then I could not get contact with Nurse then the GP. Good Luck. x
 
I phoned my ibd nurse about 2 week's ago.. Still waiting for her to get back to me and I have called back in the meantime.. I couldn't wait any longer
 
Josephine said:
Ouch, that more enough time for the nurse phone you back. Sorry if sound arrogance it was not suppose to be.
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No not at all :) sometimes my GP will phone my IBD nurse if they aren't sure what to do, they have a different number that goes straight through but they aren't able to let the patients use it. So it would of been a useful suggestion. I think the IBD nurse at my hospital is on her own at the moment and is a bit overrun, so it's hard to get contact with her.
 
You said your colonoscopy was last year. Do they plan on doing another soon. In light of your symptoms the earlier the better or atleast some imaging to see what's going on. You are in my prayers.
 
I don't know how often they do them at my hospital, my GI hasn't mentioned when they next plan on doing any tests. I think it depends on my symptoms. Thankyou for your support :)
 
I have heard time and again that with active crohn's an annual colonoscopy is warranted. At my current rate I'm getting two per year but that's a bit excessive and doctors don't think about my feelings putting me through these tests.
 
Ouch, *hugs* two a year sounds awful.. My colonoscopy was horrid, took twice as long as it should of and it was very painful, I can remember the whole thing.. I sincerely hope yours aren't like that! Hoping if they do another then they'll sedate me better this time. My consultants are a little more conservatives so they'll probably say bloods and an MRI/ ct scan first. I will keep you all updated on how things are. In a lot of pain right now.
 
I generally feel fine with colonoscopies. One was bad and I had a lot of pain and blood but generally it's okay.

Sorry you have that experience, it sucks when we are knocked out and in other peoples hands :(
 
I can even remember the conversations I was having with the doctor and nurses during the colonoscopy..

I hope you are doing a little better recently
 
Do you have a consultant gastroenterologist who you see regularly? Once you've had one appointment with a consultant, you can usually call his/her secretary and request another appointment, you may not need to go through your GP. (At least that's how it works with my consultant.)

Ive been re-reading my colonoscopy report from last year, and there are some areas which it says are inflammed which I dont think were removed during surgery and would be about where I'm getting the pain now.
Click to expand...

I've generally found that the location in which I feel pain is not a good way of determining where the source of the pain actually is. Pain can be referred, so you feel it in a place unrelated to the source. Plus our abdomens are so full of different organs and different parts of intestine bunched in together, it's very hard to know where inflammation is based on where we feel it!

I hope you get this resolved quickly. :hug:
 
Hi UnXmas, I do have a GI I may be able to call, well I actually have 2 , the one I see most regularly isn't an IBD specialist, but he does more for me than the other one, and he was the one that diagnosed me, first got me on medications and organised me meeting surgeons.

I can try calling my consultants Secretary, but you often just get pushed from pillar to post with her, she has a little bit of an attitude when patients call direct, but I normally ignore it and just call anyway if I can. Sometimes it does just speed things up a bit more if the doctor calls/writes for me or as well as me.

I understand what you mean about deferred pain, especially with having so many possibilities in the abdomen. So I will be trying to keep an open mind about that too. Although I think I would feel more comfortable being given a maintenance med this time, I don't want to be making a habit of this if it can be avoided at all, was up literally all night last night with pain and pred insomnia, and have subsequently felt rotten all day.

Thankyou for your support :) .
 
Hey Angel,

I’m so sorry to hear that things may not be going so well for you. :(

First up get to the GI and get on some long term treatment for your Crohn’s. Was it your decision not to go on maintenance meds post op or was the option not given to you?

Secondly the diarrhoea: Just be sure that what you are experiencing isn’t the legacy of the surgery rather than any Crohn’s symptoms returning. It is not uncommon to suffer with bile salt malabsorption diarrhoea following an ileocaecotomy, I assume that is what you had when you say hemicolectomy. It has to do with the area of bowel removed not Crohn’s. Also have them rule out any sort on bacterial infection as well before looking at Crohn’s returning.

Iron: Have they discussed infusions with you if you can’t tolerate oral meds?

Supplements: Are your levels of Iron stores, B12, Vit D, Magnesium and Zinc being monitored regularly? If not go to the GP and have them run the tests and cc the GI into the results.

Also have them do faecal calprotectin (the GI may need to order this), another non invasive way of seeing if inflammation present and it is specific to the bowel.

Dusty. xxx
 
Hi Dusty , thankyou

I wasn't given an option to go on a maintenance medication, it was a case of 'we'll see how you go' which I did question with the IBD specialist (who I see around once a year, if I'm lucky) and he said to have the op and then they'd see what I was like a few months later, if I was having problems then they would 'consider ' a maintenance medication.

I did think the GP did seem a little overly sure that it was the crohns was returning, but my Crp has been high in the last month or so, so maybe that was his reasoning. Some of the doctors at my surgery just look for the easiest answer for them if I'm honest.

One of my regular GPs (who is away on annual leave) suggested trying over the counter iron supplements (which my stomach hates, so had to stop) for three months and then having it checked again, and then considering infusions if it's not improved.

The last time I had anything other than my iron and calcium levels (permanently high) checked was in hospital after surgery, I had low potassium, but everything else was ok, so I'm definitly due for a recheck of those, which I will be getting on to!

I think my GI does need to order a fecal cal. I've never heard any of my GPs talk about it and I've had a strange look if I have.
 
Hi valleysangel92 I hate to see u posting a bad update ur such a big support to myself and so many others u got me through a really hard time and I thank u so much for that. Ask ur dr'a about entocort it's stopped my flare in its tracks and pretty sure it's a lot less harsh than pred and can stay on it longer. I'm definetly saying a prayer for u today and I know it well pass soon hang in there!!
 
Thanks jinson, I've had entocort before, I know it works for some people but it didn't get me into remission and I needed 9mg to help with my symptoms, any lower I flared again, although they are less harsh than pred, they are still a steroid and aren't really meant to be a long term maintanance med, which is what I would prefer I think. Thankyou for the suggestion and the prayers.
 
Yeah I just tried to taper and started flaring again so I had to step back up to 9mg I don't know whats next but it's looking like I can't taper right now hopefully sometime next month I can try again
 
Hi valleysangel. I am so sorry that you are having such pain, and hard times. You go through so much, and are such a trooper. I am wondering if the prednisone (day 2?) has given you any relief of the abdominal pain that you are having. I am also curious about the joint pain- I would think that the prednisone has made a difference? But wow- just 5 days of it. I hate to think of you hurting so much! Sending an hug, and you are in my prayers!
 
Thanks fozheart :)

I'm on day 3 of the pred (started them Thursday), so far the D is better, still there but less frequent, but the pain is no better, and I've had a few episodes of cramps too. My ankles and hip seem to have improved a small amount, but my knees were badly swollen last night, so some good and some still the same.

Yeah that's what I thought! I know they don't like using it long term but 5 days is pretty short. I have a very strong feeling I will be heading back to the doctors next week . I'm seriously hoping they won't just leave me with nothing while I'm waiting for the GI.

Thankyou for your support :).
 
A little update. I finished the steroids yesterday, still having pain in the lower right side. The D had subsided until today, so far 3 episodes already and it's only 12.41 am. So looks like I'll be heading right back to the doctors as soon as I can get an appointment, and trying to contact my GI / IBD nurse too.
 
Oh dear.... sorry to hear this. I suppose I would be dreaming, if you could get into the doctor today, or even tomorrow? I hope that when you do go, they take some much needed blood tests, to begin with. You seem to be so easy going, kind, respectable, and patient, which show such admirable character and certainly a very lady-like girl.... can you bring your mom or someone, who can put the pressure on them to make them hop and get to the bottom of this?! So wrong for you to be just hanging out there on a limb and suffering so! Good luck, honey!
 
fozheart said:
Oh dear.... sorry to hear this. I suppose I would be dreaming, if you could get into the doctor today, or even tomorrow? I hope that when you do go, they take some much needed blood tests, to begin with. You seem to be so easy going, kind, respectable, and patient, which show such admirable character and certainly a very lady-like girl.... can you bring your mom or someone, who can put the pressure on them to make them hop and get to the bottom of this?! So wrong for you to be just hanging out there on a limb and suffering so! Good luck, honey!
Click to expand...

Thanks fozheart :)

Today would certainly be a dream! I'd have to convince them that if I didn't go then I'd end up as an emergency.. Or I'd end up seeing the practice nurse practitioner (a nurse that can deal with minor stuff and some prescriptions) who tells me she can't deal with crohns every time I see her. I *hopefully* will get one tomorrow, but I have to call at 8am and hope for the best. Bloods would mean another appointment with the nurse probably next week (they don't take them during the appointments here, only the GI clinics do, GPs make you wait) .

That's so nice of you to say :). Unfortunately not if I go this week, my parents both work, mum works as a teaching assistant in a primary school, Dad works putting together, delivering and installing medical equipment. And my boyfriend lives 50 miles away. So a lot of the time I go on my own, unless I've got a hospital appointment that is either really big or really hard to get to..

I'm hoping I will get to see my more regular doctor as she is pretty good at putting pressure on the hospital to get me seen. Don't get me wrong, I love the nhs, if I get well enough I want to be a nurse myself, but sometimes it is rather frustrating waiting around all the time.
 
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I just called my doctors, they have no available appointments, 2 doctors are off sick ,some are still on annual leave.. They can't prebook any appointments because they don't know what doctors they will/won't have... this is why our A+Es are so over used.

I guess it's time to try the IBD nurse again.
 
We're finally getting somewhere :) . Got into my GP under the emergency clinic, when he called me in he took my history, and then decided that he would like to speak to the hospital.

He called me back in after about half an hour (he sent me to the waiting room while he waited to hear back and saw some other patients) and said the nurse wanted me back on steroids for 10 days, then taper one a day and that she would talk to my consultant and get back to me.

Just after I got home, we had a call from my GP, the nurse had called him back, saying they want me to have some bloods done, and they have prescribed some meds to make sure I'm absorbing bile salts properly, they are also sending me a form to get a stool sample tested. I have to have the bloods and pick up the prescription tomorrow. This is all in preparation for a clinic appointment sometime soon .
 
Yep that's true, I can tell my poor consultant tried, I had another letter at the same time, saying they'd had to cancel my appointment on the 30 th of this month (which I didn't know I had, and which I wouldn't of been able to get to anyway, but that's beside the point, the consultant tried ) .. The only thing my GP will prescribe is pred and pentasa, I'm on pred at the moment.. pentasa does nothing for me, but they won't prescribe anything else, infact, they won't even prescribe pentasa without the say so of the IBD nurse .. Who, bless her, is unbelievably patient with my GPs . The issue is in my GP practice it's very hard to get the same doctor twice and when I see a new doctor they get very bogged down in my long history and forget to look at what's infront of them at that moment. I just don't want to be stuck on this dose of pred until January, I'm not sleeping, and it's driving me nuts. Anyone have any tips for that?
 
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Also, just curious , I was going to ask my GI but I'll see him too late, is it safe to have a small amount of alcohol while taking steroids? Hopefully I won't be on them at this point, but I'm having a little family party / meal on the 21 December to celebrate my 21 birthday (which is on the 26 th) and although I don't normally drink very often, it would be nice to just have one if I can, of course, I can have plenty of fun without, just want to know if the option is there if I felt I wanted to on the night?
 
I have always asked my doctor if it ok to have a drink while on prednisone. ( I used to have an occasional beer or glass of wine, in my younger days!) The answer has always been yes- a drink or two is fine occasionally. That answer has come from all of them- rheumatologist, cardiologist, surgeon, etc.
 
So i got a letter from my GP today, asking me to call to discuss the results of my blood test. I have to have some repeated, including my iron level, which is currently at 6. My doctors class normal as 12-15. The last time I had it checked it was 'slightly' low ( in september, it was about 10.5) and they discussed with me the possibility of iron infusions since I can't tolerate oral iron (nausea, cramps, major constipation) so it looks likely i'll be headed down that road in the next few months too.
 

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