No real answers from Drs, inflammation in buttock

[guest78]

Hi guys,
I'm new to the site.
I have had Crohns since I was 16, flaring up about once a year.
I have however, been in remission for the past 20months, up until now.
About 4 months ago I noticed blood in my stool but with no real other symptoms I was not urgently looked in to. I gradually began developing new symptoms had when I was finally investigated with a flexi-sig I was told that I was largely healthy but had active crohns in the anal area; for the first time. they also found a polyp. I was given steroid suppositories but they didn't really clear anything up and were just extremely painful to insert with a lot of swelling and bleeding (sorry) I was still bleeding, having very loose BM, and in so much pain going to the toilet and sitting down that i either had to lie on my side or sit on a ring. My appetite has gone and I have become very run down. I also developed a temperature of around 37.8-38.8 constantly. Thinking there must be an infection I had an MRI looking for abscess's but have just found out there are none. Just inflammation in one buttock. I don't know what this means? I have been proscribed two sets of antibiotics, as there must be an infection somewhere due to my high temp. But they have yet to sort anything out and i am half way through the course. I am becoming very frustrated that the drs do not seem to know what is going on, or have any real urgency to work it out. I have been off of uni now for 5 weeks and pretty much home bound with no energy and feeling very un well. This flare up is nothing like my normal flare ups.
I'm hoping someone can help me. It's disconcerting that nobody seems able to help, I don't know what to do...
:sign0085:
Thank you. Gxxxx

 

[csunshine]

Hey G,

Sorry you aren't feeling well :0(

I had similar symptoms to you after the birth of my baby back in March. I saw my Gastro Consultant and complained of this pain in my ass (difficult to describe the pain, but almost felt like I was still full of poo even though I didn't need to go and also felt like I was tensing my buttock muscles all the time involuntarily - weird!!). I had an MRI scan but it also showed nothing, a few months later I had a colonoscopy which just showed UC as expected.

It was only in early Sept when I felt a lump on my anus did my consultant advise me to go to A&E where they decided I had an abscess and quickly got me in for a drainage op where they also found a fistula. I had a seton stitch put in and I've been a lot better - I'm pretty sure this is where my pain was coming from. It's still not gone, but then the Seton is still in and I'm guessing until that's gone and the fistula is healed that there will be some pain/aching.

It sounds to me like you must be developing an abscess somewhere - the fact that you feel so rubbish and you have a high temperature points to this. Also, you say this isn't like a normal flare up - I know exactly what you mean, it is different (and not in a good way!).

I'm not sure what else you can do other than keep chipping away at your consultant for more tests. I'm pretty sure that my fistula was there all along causing the pain I was complaining of, so I don't believe and MRI always picks them up.

Good luck and hope you feel better soon
Claire x

 

[mflaum]

I agree with Csunshine about the abscess. And it sounds like you could have been prescribed Cipro and Flagyl. Stay on the meds. You might want to take them longer if possible.

Flagyl and I do not mix. Awful taste in the mouth coupled with dizziness and no energy.

Best of luck.

 

[barkbbdog2]

I had the same inflammation in my left buttock. Abscess and fistula eventually formed.
If they finally do find an abscess and they have to cut it open.....make sure they put you out, because having an abscess cut open in your anus...is about the most painful procedure in the world. I am a grown man, and I cried like a baby. Humira eventually helped with the inflammation, but lately is not working. Right now they just put me back on flagyl and prednisone.....will be trying remicade soon.

Good Luck.

 

[Spooky1]

I have an abscess in right buttock, same old place as ever, it tends to go after a number of weeks though. I also get a fissure up my rectum too. the most frequent and worst of course is that ever present layer of skin missing from the anus. The bile has taken it off and its excruciating. Cavilon is a good barrier cream, and certainly much better than folding a square of loo roll, putting it over the middle finger, dunking it in vasaline and stuffing it up there to stop the stinging! there, little crohns secrets, lol.

 

[guest78]

Hi guys,
Thank you all so much for posting. I continued on the antibiotics despite the horrible side effects. I finished the weeks course and even though I was left not entirely well and still had lots of symptoms I wasn't give any further treatment. I have since gone very much downhill from there, & back to the beginning. My consultant has gone away on holiday & despite repeated calls, emails and messages I haven't gotten through to speak to anybody at the hospital. Eventually I managed to speak to a secretary who told me to go to my GP. I did and they are understandably not at all impressed with the hospital. My GP has given me broad spectrum antibiotics to try and relieve things until I can see my consultant again. But I am very down about everything.
Xxxx

 

[Sailorluna]

Hi GEC,
Sorry to hear you are going through all of this. Have you tried a sitz bath or sitting on a heating pad for the pain? It helps me a lot. Do you have a fever?

 

[guest78]

Hi GEC,
Sorry to hear you are going through all of this. Have you tried a sitz bath or sitting on a heating pad for the pain? It helps me a lot. Do you have a fever?

Hia,
Thanks for replying. warm baths are about the only time I am not in pain but it comes shooting back the moment I get out. What kind of heating pad do you use?
I do have a fever, at its highest its 39.1. Ad have a mix of being drenched in sweat and feeling freezing and being un able to warm up.
X

 

[Sailorluna]

The heating pad I have is from a company called - Sunbeam. I bought it at Walgreens pharmacy. All the relief of a sitz bath and it is portable. I am sitting on it now.

I am sorry that you are being treated so poorly. Did you tell the hospital that you have crohns, are running a fever and believe you have an abscess? Does your hospital have a GI or better yet a colo-rectal surgeon on staff?

I have shown up at the ER told them that and been swiftly admitted in our local hospital. At the least they should give you a CAT scan to see. My doc has told me not to mess around with a fever and possible abscess when you have crohns.

Have you seen a colo-rectal surgeon at all?

 

[guest78]

My dr knows all of the symptoms and treated it with antibiotics. I emailed her to say I didn't believe it was working and still felt unwell etc and was told to "chill out" and wait. She has since gone on holiday. I have tried to contact her to no reply. I have rung the hospital to talk to my specialist nurse but she was not available, I have left her messages and emails but got no reply. I then spoke to a different nurse who told me a consultant would be in contact but no body got back to me and nobody was there when I rang them. In the end my mum got through to my Drs secutery who told her as my main dr was away I should go and see the general local GP. I was basically turned away. Who was understandably, not at all impressed. But prescribed me some antibiotics to tide me over until I can be seen again by my specialist dr.

I'm debating a second opinion/ changing my dr as I feel so let down and left to Getting better on my own.

I really will look into the heat pad it sounds really helpful. XX

 

[smallfry]

Hi Gec, I am so sorry you are being treated like this. I have had a somewhat similar experience many years back... I went and got a second opinion only to find I was abscessed with sinus tracts. Don't be afraid to seek another opinion. One thing I have learned over the years is to stick up for yourself because you know your body best and when something is not right!

Maybe try a different ER instead of your GP. As Sailorluna says (she gives great advise by the way) you need to a see surgeon and that's where you find them faster! She's also right on with sitz baths and heating pads... I use the same brand of heating pad!

I don't want to scare you but I am in the hospital at the moment from an abscess that has lingered too long and now i'm being told I almost went septic I've been stuck here for 11 days on IV antibiotics and am starting to come around. My temperature was only a 37.5 - 37.9 so don't take any kind of temp. spike lightly when dealing with an abscess please.

Hugs for you and hope you get sorted soon.

 

[guest78]

Hi small fry. Thanks for your reply. I have since been admitted in to hospital. Have been here now 6 days on IVsteroids. The temperature has been bought under control but they still do not know where that has come from. The CT and first MRI showed nothing so I'm now waiting on my 2nd MRI result. If there is no abscess I'm not sure what their next move will be. I'm really struggling being in hospital, and feel that progress is very slow. My joints are the only thing being bought under control currently after seeing a rheumatologist and a physio. Just wish all these tummy issues would be controlled. Going to the toilet is still extremely painful and the stool often contains a lot of blood (apologies) which I am finding it scary!

 

[smallfry]

It is very hard being in the hospital for any length of time I say. The food is horrendous, I always loose weight in the hospital which I think is silly. I try to bring my own foods but it's still hard. Things seem to move at a snails pace don't they, sometimes I think they communicate through carrier pigeons
So your fever got under control with steroids? If so good, maybe you were just spiking from your crohn's flare and the IV steroid is really helping. Hope you don't have an abscess, maybe it's more of a fissure? I'm sorry and hope you get your answers soon. I hear ya about the painful bowel movements, I have a temp loop ileostomy and am loving it for that reason. It's so nice to not poop and have extra pain!
If you can try to get out for air as much as possible, the stagnant hospital air is terrible!! I always feel a bit better after some air...mentally that is

 

[guest78]

Hi small fry
You are right, the lack of food, good sleep and fresh air really gets you down. I have to say it has been one of the most stressful experiences being in hospital! Not relaxing at all.
They have now taken me off the IV steroids and have started in oral pred. Which means I can hopefully go home tomorrow. Big downside being I HATE pred. The side effects can really take their toll. I did get my MRI back which was clear! So no fissures/abscesses. Which means my 39.2 temperature was down to a crohns flare up. Feels like I might be getting somewhere finally, answers wise but it is feeling like a big up hill journey to getting better.

Thank you so much for all of your support! XXX

 

[guest78]

Had some rubbish news. Been making progress over the past few days and my MRI was given the all clear on Monday. I'm in the process of being discharged and the dr has come in and apologised saying they have re-looked at my MRI and they think there may be something there and some am now seeing a surgeon.
I'm heartbroken. Im all ready to go home and am now so scared and feel so let down

 

[Sailorluna]

So sorry to hear that. It sucks when they tell u the wrong thing and get your hopes up. Its even worse when it means you cant leave the hospital. When do you talk to the surgeon?

 

[Spooky1]

GEC,
am hoping surgery can hold off till after xmas. Get well soon though

Best wishes

 

[debbie261]

I agree that it is most likely an abscess.When this happened to me a few years ago I went to ER when I could't tolerate the pain anymore and was rushed to surgery,the abscess was gigantic on the inside.My heating pad was my best friend,it really helps alot.

 

[smallfry]

Hi GEC,
So sorry to hear but at least they did find something and now they can work on it. There was a time many years ago when I had a GI tell me nothing was there and of course when I got a second opinion there was. MRI's can be very hard to read, specially if the wrong person is reading it! I usually get let out a day or two after my drainages so hopefully they will be quick fitting you in and you'll be home just in time for xmas!! Keep on top of them and I say just stay and wait till they do it. You don't want to be home in pain for xmas! Drainages bring much relief, you'll still have pain but no where near the pain when it's full. Have they mentioned a seton or just drainage?
hope you get sorted and outta there real soon!!! Keep us posted on your progess!
Hugs

 

[guest78]

Hi guys,
Thanks so much for your support. It turned out when they said my MRI was clear they had been looking at one I had in October and my new one hadn't even been looked at yet. Which I was livid about. It was a mistake, but scary that it can be made!!

They said it showed a small abscess and a tract; due to my symptoms improving on my steroids they agreed, finally, to let me home on antibiotics and to rebook me in to have a look.
I'm on strict instructions to go back if things deteriorate but at least I am home!
They want to have a proper look before deciding on the course of action, but a seton was mentioned. I have not had to have any surgery yet and haven't had anything more than a flexi under sedation for 5 years so they are hesitant to do anything until they absolute have to.

Thank you all so much, it's been a really horrible time and for the first time since being diagnosed I feel like I'm battling with the menta side of everything too. Almost like after 5 years its truly hit me that this is something serious I have forever, which may not always be easy or simple to treat. A scary thought!

But, as I say, I am now home always a plus.

X

 

[xX_LittleMissValentine_Xx]

Glad you are home from hospital and have some answers. Good luck with the surgeon!
Looks like you are in the same situation as me atm. I've also got abscesses and fistulas and waiting for an Examination under anaesthetic with a possibility of having a seton.

 

[guest78]

Hia, thank you very much
yup sounds the same to me! & my Drs are in Reading! How weird!
Good luck with everything!
Xxxx

 

[xX_LittleMissValentine_Xx]

How funny! We will have to compare who will get the quickest surgeons appointment then, considering how we both got told the same thing today! x

 

[Hope345]

GEC,

Sorry to hear all that you have been through. what a nightmare.
That makes me so mad at those doctors for looking at the wrong results and all of the problems you faced before being admitted to the hospital.
I hope they can take care of your abscess soon, or it can be minimized by meds.

It shows us that many doctors do not know enough about Crohns, and certainly do not always respond appropriately. We have to stand up for ourselves or our children. We know when something is wrong!!!

When someone is sick, they do not have the energy or ability to know exactly what to do and depend on others to help them. This site is just that. As a mom, I can research, ask questions and find the best solutions for my daughters current symptoms. Each person needs someone to help them during the worst times.

When you are well, do as much research as possible, or contact anyone on this site for help.... we care and will be there!!

Please keep us updated, and maybe call your insurance company to see what your options are. Usually a referal to a GI is covered.
take care and Merry Christmas to you and all on Crohns Forum.
Julie

 

[guest78]

Exactly! Which consultant do you see?

Julie,
You are so right. Me and my family keep looking back and thinking this could have all been so much worse, and what could we have done to get answers quicker. I have tried to be so proactive and have largely pushed myself through to diagnosis with constant emails and calls. And I can't help but think, if I hadn't, what an awful position I might have ended up in. Which is very scary.

It has definitely made me realise that despite the Drs doing all they can and everything only we know our bodies. And we know when something isn't working.
I am now going to be a hell of a lot of proactive and take a lot better control of my condition, rather than rely on the Drs and nurses.

Xxxxx

 

[Hope345]

My daughter was diagnosed with Crohns this last Jan. We drive a couple hours to Portland Oregon to see a Pediatric GI (Dr Linda Muir). However, there is a source on this site that can refer you to some GI's others have recommended in your area.

Our daughter has Crohns colitis, and it has been a rough year for her. We are hopefully on the right track now. she is getting her 6th Remicade treatment in two days along with an iron infusion. We added a topical cortifoam treatment which seems to have stopped her bleeding and cramping. Her energy is still down, from being anemic but I think after Wed. she will feel so much better.

I love this site and hope it helps you as much as it helps me. I do love B's doctor and nurses, they are wonderful, but they see so many patients that they cannot always make the correct diagnosis in 10-20 minutes..... we have learned that too. Every time I send an email to our doctor, I explain in detail who we are, what my daughters diagnosis is, how she is being treated, what are her current symptoms.. it has helped. After I do research, we often change the course of action ourselves after talking with the doctor again. Like you said, be proactive as much as possible.

talk soon:hug: